What if you were suffering from an illness that was slowly ruining your life, or even shortening your life, and everyone around you told you that you were “just fine”, and that “everyone feels a little off and tired now and then”. What if you were in terrible pain or deep fatigue, and everyone said it was just in your head?
There can be tragedies and health issues that we understand fairly well, and most can certainly be compassionate and merciful towards those suffering under them. But there are other illnesses that are not well understood, or understood at all. There are kinds that don’t affect your outward appearance and your longevity, and so people assume “It’s not that bad.” Worse yet, there are those given a clean bill of health by their physician, yet they know that something is deeply wrong within themselves. Their doctors, friends, and family can brush off their complaints, doctors can under-diagnosis, or say that it’s all in their head.
But they are suffering deeply, and it only makes their suffering deeper when no one seems to understand.
Illustrated through Lyme Disease
I’ve been thinking about this issue a lot as a dear friend of mine is battling Lyme disease. There is a wide range of severity to the disease, and her case is on the more extreme side, especially considering that she’s probably had it for about ten years without it being treated or diagnosed. At this late stage, there has been horrible pain that even the strongest pain medications can only alleviate so much. As her husband, family, and friends have gathered to help with her treatments, take her to the doctors, love her, pray for her, and give her compassion and help whenever she has needed it, it has brought a flower of hope in the middle of great suffering.
What makes my skin crawl is that Lyme disease, with all of the horrible, painful symptoms it can produce, was, and is even still, so under-diagnosed. Patients suffering what my friend is now suffering have been told, “You need psychological help, not physical, because it’s all in your head.” No pain medication, no real compassion or understanding, just judgment while you walk through a valley of pain with little hope.
If advanced Lyme disease wasn’t an earthly hell enough, surely being untreated and misunderstood and judged makes it even more so.
It makes me wonder how many people today are still in that position. Perhaps their health condition is undiscovered still, or perhaps they aren’t diagnosed yet – despite attempting to get care. Perhaps a doctor hasn’t been able to fit the confusing individual symptoms to the true cause yet. And so they suffer on with little knowledge of what is really wrong, and little hope.
Illustrated through my story
Sometimes this includes things not as serious as Lyme disease. For me, it was un-diagnosed low iron. We suspect I was low since my high school years, but since I was able to pass with flying colors the most common test for anemia, I was never properly diagnosed despite my many symptoms of low iron. It was actually a fairly simple problem, but finding a solution was really hard.
I was taken to several doctors during my high school years and given a clean bill of health each time. I started seeking help for myself when I started wondering if the bone-tired feeling I had all the time (and the frequent infections at certain points) were normal. I did get some beautiful help from some excellent naturopaths, but still my energy was low, even if somewhat improved. When my blood tests showed that I was well nourished and “healthy”, my continued fatigue, and my signs of a slowed thyroid function were shrugged off. Hints of being a little hypochondriac were implied. I had a hard time helping friends around me understand how badly I felt, and how tired I was, when I looked fine on the outside, and functioned fairly well despite the fatigue.
By this time I had learned to trust the distress signals my body was sending me, and I knew all was not well. But it was livable for the moment, and I had run out of options and ideas. Years later, I found myself increasingly dragging, my hair falling out rapidly, and an even greater fatigue that I was no longer able to fight through. I thought I was dying. I sought help again, found a doctor that took me seriously, got better and more thorough lab testing done for me, and through that discovered I was deeply iron deficient, which was also unbalancing other parts of my body as well.
And I was deeply grateful for two things – being treated with compassion by a doctor that believed me when I said I felt awful and felt something was wrong. And secondly, finding out what was wrong.
It was a comforting hope. No longer did I beat myself up for not having the energy I needed for a well-rounded life. I understood myself better and was able to give myself grace for the reality of my situation, and hope for a better reality soon.
I wonder how many out there suffer like I did, with undiagnosed nutritional imbalances or deficiencies, who are shrugged off by their doctors, treated as lazy or crazy or both by friends or family, and who wonder themselves, whether not everyone feels as bad as they do, but are just able to put a better face on about it.
If you are in that position, here are some words for you.
An Open Letter
Dear Undiagnosed Sufferer, I know it’s not just in your head
I’m sorry. I’m sorry that you don’t get the help and compassion you need from finite humans. I am sorry that doctors don’t understand, don’t listen, don’t know, don’t run proper tests, or give you the resources you need.
The fact is, no matter how many strides we make in health and science and in treating people, there is still a lot more to learn. And sometimes unfortunate ignorance, health issues yet discovered, or perhaps still misunderstood diseases create a double victim. It creates a victims of a health problem, and a victim of misunderstanding and judgment.
There is nothing I can say to make that reality better, but I want you to know, I understand what it’s like to be there, and feel those things. I understand the helplessness it can produce, and the heartache and continual physical pain you can walk through. I understand the self-doubt, and self-condemnation, the frustration when you try to move on in life, but just can’t.
Because we aren’t all knowing, and because have so much to learn still, I can’t promise a better tomorrow. Yet…yet, my word to you is still this: Don’t give up. Don’t give in to despair. Help may just be around the corner. Keep looking for answers. I’ve found so many good and compassionate doctors, and I’ve come to realize that not all have the same knowledge on the same things. While it took time, and created hardships financially, not giving up, and continuing to see other doctors and looking for answers often bears fruit for many of us.
That’s my story, and the story of my friend with Lyme, and other readers here too. I can’t guarantee that will be your story, but there is hope there still. We may not have all of the answers yet, but I am continually amazed at what we do know, and the current research that there is.
I’m not saying it’s easy, or that it always works out how we want. We’ve lost a child, which modern medicine couldn’t save despite much promise. We’ve lost a parent which alternative care, and a very healthy lifestyle couldn’t save, also despite much hope. It can be easy to say, “Tomorrow we die, so eat and drink and be merry.” I say, enjoy today, relish it and be glad for it, no matter what lies in stock for us tomorrow. But also see the beauty in the fight for a better future as well. It’s not only armed forces that fight wars; it’s not only the scientist, the naturopath, the doctor that fights the war against illness. Often the first step towards getting better is fighting for hope, and with that hope fighting for answers and not giving up, not giving into despair.
And, if I may, a word to my Christian readers: What a relief to know that our final hope is not in whether we find the answers we need for healing our earthly bodies. What a hope we have that even if we lose an earthly battle against sickness, lose against receiving compassion and care from others, and finally lose hope for wellness here, what a relief to know that better things, that a whole, un-painful future awaits us, bought with the precious love and sacrifice of Christ. We find love and care even now from this, and true healing awaits us. That is the hope against all hopes worth fighting for.
In closing, there is so much pain and hurt in the world, but there is also so much beauty and hope as well. Find that beauty and hope wherever you can, and enjoy and savor them. While there are always dark times, and sorrow in our lives, there are also times of great joy, and ability to continue fighting well.
So fight on, dear friends. And may tomorrow bring more joy.
With hope of better futures for many of you,
Love,
Kimi
Last thoughts: I’m not discounting that there are never those with purely psychological issues that cause them to feel sick and ill. I simply think that it’s unfortunate that those with very real, and treatable diseases can be misdiagnosed with that. However, even situations where the origins lie purely in the brain, they should be given compassion and love and care, as those illnesses are real in the minds and lives of those suffering under the mental pain of thinking they are sick. Those suffering mental illnesses should be given the same compassion and care as those with other physical illnesses.
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Thank you so very much! I’ve been struggling with chest pains and shortness of breath for about half a year.
Only recently I took a 24-hour Holter ECG that revealed episodes of increased QT… which is very dangerous. And yet, cardiologist said I was just fine, and my sensations are a cause of anxiety. Sure enough, I’m going for second opinion.
Seems like anxiety is a good escape route when doctor has no clue of what is going on.
Needless to say I still get a painful lump in throat and my breath is uneven, hurting my throat… Yet nobody found anything! I’m a healthy young male!
…No, that’s just wrong. Anxiety can’t cause such persistent symptoms. It’s just impossible. God only knows what else could be causing my symptoms…
I hate to have to say this, but its true. I have had many medical problems over the years, i am only 37. I have many types of problems, all over the board. I don’t want to list them all. But, i can’t get a diagnosis for anything, they send me for tests,(only if i press for it!), and they mostly always come back clean. At least that’s what they say. I have significant medical problems and concerns, but the doctors don’t care. They try to ignore it and play it down, and divert me away from tests to find out what’s wrong. They keep trying to shove pills on me that i don’t need. They guess at what’s wrong and try to fill prescriptions for it. My doctor doesn’t even write anything on my file about my concerns when i see him! One of my friends and my father in law died because of this doctors negligence. I have tried getting a new doctor, and there is no one available, they say. Most of the doctors, don’t care! And they are not doing their job! These doctors licenses should be pulled, many people are suffering at their hands, and many have already died because of it, and i know, because if the doctors won’t help me figure out whats wrong, so will I. This is happening everywhere. People all over talk about the medical negligence and needless suffering going on! All i can say, is educate yourself, do your own research. Because if i wouldn’t have, i would still be suffering from PCOS and not know! But my list goes on from there……..and they don’t care about any of it! So, trust your gut/intuition!
Im with you 100 percent. I treated the same way. **I DO NOT WANT ANOTHER PILL!! I want to feel better!!!
It’s a bad system. The average doctor doesn’t receive proper training to actually heal anyone. Their goal is not to get you into optimal health. Their goal is to give you a quick fix, because actually most people do you want a quick fix. Many people don’t want to change their lifestyle unless they are threatened with death. If they can take a pill and keep living how they are even if it leads to more pills, they are satisfied with that.
Deep down the doctors know their methods don’t help anyone. They don’t respect themselves because they know that. They can’t be proud of what they do because what they do is sad. They took a lot of time to learn something it isn’t helping them do what would actually help people and they spent a lot of money doing that. Who wouldn’t feel angry about that. And maybe mom and dad pushed them into medicine. But that’s still their fault. Only go to function medicine doctors. Pay the big bucks if you have to.
I have PCOS too. I need a real hormones to fix my real hormone issues. But they only want to stop my body’s natural function and sell me birth control pills and depression meds, so they can get a pay out. They say bioidentical hormones give you cancer. Wrong. Quiet the opposite. Are my own natural hormones giving me cancer then? Doesn’t make sense. The dent in their pocket book does though.
It maddening and makes me want to move to another country. PCOS and chronic illnesses lead people to kill themselves in despair, and the doctors can’t even give us 15 minutes of their time. Their time, that we pay for.
Never go to a doctor that doesn’t hold to a strong religious or spiritual practice either. That doctor has no concern for your well-being or soul.
I agree. I’ve been tested for a disease three time and each time the results have come back negative. I don’t know what I have but I know I have a disease. I’m dealing with neuropathy. The ones I trust and love the most don’t believe me. It’s very discouraging. I don’t know if the lab is screwing up the results. I know I’m not crazy and I hope this disease is not shortening my life. I believe in Jesus Christ but I love my family and friends and don’t want to leave them. I’m going to an appointment at Mayo Clinic and I’m scared. I asked a girl to marry me but I’m not sure if I will be around to enjoy the marriage.
Ive had Lyme disease too but didn’t get sick but now i have arthritis dk what type and i had been telling ppl i felt flu like symptoms and was fine but woke up one day and could not walk but in go beat this stuff cause i am and i used to walk to town and all over but now my sciatica nerve is swollen and im not taking meds not doing anything but swimming and eating and walk when can and i dont want to loose weight and yes the dr doesn’t believe me and didn’t treat me for lymes and saw my report but still he said arthritis didn’t come from lymes but i was too healthy before and i dont care what they say i believe and always will that my arthritis whatever kind it is that it came from lymes disease and i also believe that the antibiotics they treat you for only kill the infection and lymes disease doesn’t ever go away cause its a disease and i from my experience it messes ppl up slowly
I hope u found out your problem. I too have experienced that so I know how u feel
Yes. I have been given some tests, but not enough. My shortness of breath, chest pressure, flashing pain in my heart, weird headaches, weakness, heart palpitations, constant super ventricular tachycardia, throat pain, etc… has been diagnosed as anxiety. I know it’s not anxiety. But I’m getting hopeless in my fight. I totally understand how you feel. I hope God will get both of us in good hands soon.
Did you find an answer? Been having the similar
Symptoms for more than 5 months now ,
Including stomach pains as if an alien is inside me that comes an go. Had numerous test and scans, ultrasounds; all clear…its your nervous system, anxiety, in your head. Spent all my savings on Osteopath, Acupuncture and even tried a round of chiropractic ajustements as it was supposedly my nervous system. It helped but the symptoms where still there.Now the pains are back cant barely function. Been 4 times Hospital Er and 5 times at clinics. Only last dr. mentioned endometriosis. Im hoping its that. Its hard im really tired of feeling dismissed by doctors who are supposed to help.
you guys are not the only ones I’ve been fighting similar symptoms and making other people round me nausea and head aches. the doctors say everything is fine and its not! they run std testing and every test they have and nothing. I’ve been in and out of the ER and they say follow ups with your primary care doctor and not even they can solve my problem. If anyone knows a good doctor please contact me on instagram @joshuahall18. im willing to travel the country to find out whats wrong with me
Andrea were you ever able to find the culprit of your symptoms? They sound much like mine and I’m becoming hopeless.
I too have the same problems ! Do you have numbness and internal vibrations in the throat and head?
Thank you. I can’t begin to tell you how bad i needed this today.
Me too, I’ve seriously been crying the whole time of my reading of this…. I feel in my soul that I am dying and I’ve been asking for help for 4 almost 5 years now from my doctors to no avail. It’s so insane!! They literally hold peoples lives in their hands and then have the nerve to not care. How is that upholding their oath ???? I don’t want to go at 37, please start caring DR’s…..
Anna, yes you do have something going on within your body that needs attention! I too have been struggling for years (decades to be exact!) Have gone to dr after dr after dr after dr to be told I don’t have anything wrong….just because the blood works shows NORMAL. I have known for a long time that normal is NOT everyone’s normal. I felt the same way, that I was going to die. I am too young to die especially knowing that there was something that was simple that was causing so many health issues for me! One dr decided that I have fibromyalgia and I told him that I did NOT and explained that my symptoms are nothing the same as the symptoms people report with fibromyalgia! He ignored me and now that is in my medical record EVERYWHERE I go and it has been difficult for me to explain to other doctors I have seen that I DO NOT HAVE THAT! no one seems to listen and it goes on and on and on. Test after test…you are fine you just need to learn how to “deal with your symptoms”! I have heard that so many times it is hard to count from different doctors. In April of 2017, by the Grace of God, I was in the office of a natural path that asked me questions for 2 hours. I did not tell her anything that I thought was wrong with me nor did I bring my “medical record” with me. I wanted her to have a clean slate and figure it out on her own. When she looked at me and told me I need thyroid medicine, exactly what I have been explaining to doctors for YEARS! I started to cry that very moment because I knew I was going to feel better once again! 5 months later today as I type this, is the best I have felt in over 26 years!! Praise to for that. As the article said don’t give up, don’t ever give up. If you want more info from me regarding who I saw let me know. I have been in your shoes and I pray God is guiding you into feeling better.
I read your story and it sounds a lot like my sons. He is a 29 year old veteran, suffering for the past 5 years with so many symptoms: chronic fatique, headaches, stomach issues, sleep issues, cannot eat because he remembers pushing something out of place in in stomach. Now he has low blood sugar, was diagnosed with autonomic dysfunction, the list goes on and on. He feels the doctors aren’t listening to him, do routine blood tests, mri’s, ct scans, nothing shows, so they give up. Many doctors have diagnosed him with somatic disorder, clinical depression, he has been hospitalized in the phychiatric unit 20 times. We are trying to find a doctor that will actually listen and help him. I am happy to hear that you have God in your life, I know that is missing from his because of all this illness. If there is any info you can give me to help my son, I would really appreciate it. Whatever this illness is has destroyed his life, he is bankrupt looking for answers, homeless, has alienated his family and friends because they cannot find the answer.
Research gulf war illness. There is a Facebook group as well. I’m going through the same thing.
Been suffering for 5years vomiting every day extreme pain and fatigue, Out of hope plz help me find help.I cant do it any longer.
Hi, I’m a reporter at VICE looking to talk to people dealing with undiagnosed health issues that doctors have dismissed. If you’re interested in telling me your story, please reach out to me – allison.lau@vice.com
Help ,I’ll tell you everything. Beendying in extreme pain and vomiting and fatigue unable to ever not be sick.Im tierd of fighting anymore. If they cant find it your crazy or druggie, I beg to be well, unable to fight too much longer. So tierd of all Dr.s saying Im sorry I don’t know.
I to am dealing with this i bleed randomly from my head and have continues migrans and my head is swelling and causing big scabs all over my head and and a presser feeling in my temple im losing my hair and i have blurred vision weakness light headedness and pain in my head like im wearing a ball cap i cant get off also big hard ichy scabs that bleed randomly all the time to the point it died my hair red and my neck and head gets to heavy to hold up randomly and im a mommy of two small babies 1 and 4 and the pain is so bad i cant even work and my dr refuses me sick leave even though ive been in and out the er none stop for two years in two different states and no one will help the pain is so bad it makes eating impossible which has no caused me to lose 40 pounds and so weak i cant get out of bed sometime s and now has caused me to be malnourished which has caused me to have low iron and potassium now i take so many pills that my lining of my tummy is starting to tear which has now caused me to be unable to be alive or happy with life i feel like wanting to die everyday just so it stops hurting but no one will help me im scared at 24 im going to die and im scared i wont see my babies grow up id give anything to be able to play with my babies and be happy with life with out feeling like im going to die i beg my dr and tell them to please help and they just act like its nothing and refuse me help with pain or a dr note for work or sick leave till they can help and as a single mom of two i cant afford anything for my kids and i cant get state help because my dr wont sign the paper saying im unable to work and its killing me everyday i cry not because of the pain or being unable to buy clothes or things i need but because no one cares enough about me to try to help im robbed of my kids growing up im living off 68 dollars a month and after bills 30 bucks to buy my kids diapers or anything they need for the whole month i cant afford holidays i walk to every dr appointment 1.5 miles from my house pushing two kids in a double stroller because i cant afford a buss ticket toget a ride anywhere which is getting almost impossible now to the point im just giving up because i see no light at the end of the road i see no hope i see me dying before my baby turns 3 im scared to death with no one to help me i dont want to die all i want is to see my kids graduate and be there for them and at 24 i shouldnt be worried about dying but im scared as hell i prey and cry everynight hoping to god i wake up and its not fare id give anything to get help i just want to stop hurting but honestly id be willing to hurt for the rest of my life if i know im. Not going to die or that i will be there for my kids but i have nothing no explanation no support no money to care for my kids and no dr or family that cares if they knew how it feels to be 24 in pain worried to the point of puking and scared to death i mite die and how am i going to support my kid its torture and wrong please someone help me if u know anyone who can help me please anyone my cell is 2342056639 i just want to live even if im in pain i just want to no whats wrong with me please anyone!!!
Me too
Thank you, I enjoyed reading this article 🙂
I have just been diagnosed with my 20th condition.
I have Epilepsy, Crohns, Crohns related Arthritis, Haemolytic Anemia, IBS, IBD, Gyneocomastia, Sliding Hiatus Hernia, Oesteoporosis, Epidymitis, Autoimmune Disease, Bladder Diverticultum, UTI’s, Nerve Damage,
crushed vertebrae c3 to c7, Rotator Cuff Tear, Leg Locking Syndrome, Broken Leg ( pins and plates ), Low Testosterone, Colanised Bacteria.
How many of you have been tested for the MTHFR mutation? I finally was, and that was life-changing for me. So many weird health issues that would come and go were finally explained. Rather than try to explain it here, just search for it on the Internet. You can pay for a 23&Me test yourself if your doctor won’t order it.
I have Tachycardia at night “Every Night”, while in REM. I have had the workup, which is supposedly fine?! Have been to ER over 20+ Times with dizziness and a racing heart. Alarms on the meters say Low O2 or Tachy. But, I am released and told I am fine.
Non-smoker, non-drinker, no drugs. They did find a moderate Ischemia on my LAD, in which I was told was a false positive due to breast tissues. I have palpitations etc.. I am at a loss, cannot exercise as I feel ill during or our of breath and go full blown tachycardia afterward.
Have you had an event mo itor? You wear an ekg and press a button when you’re having symptoms. Also look up Positional orthostatic tachycardia syndrome.
I have a few illness fibomialgia which my current g p thinks is only in people heads I had to half my thyriod removed as I had a lump on it,
I have anemia needing b12 injections endometriosis and rotator cuff, raynauts but I am struggling to walk to breath at times and basically to think clearly I feel like I am 90 yrs old and nothing left I am 44 and I would wish this life on anyone
Kaley I’m sorry you are suffering with fibro. I hope you can find a doc with empathy for you. The right drugs and exercise can help immeasurably
I have just been diagnosed with lyme diease. I am 29 and used to be a dancer, before a steroid shot threw my life into a tailspin and my body into a wheelchair within a week. After a year and half of intense pain that no pain meds would touch, horrible sores, infection (3 of which I picked up in the hospital) and going to 4 hospitals and seeing 30+ doctors, most of which told me I am doing this for attention, it was all anxiety, and that I wasn’t sick enough to be in the hospital and I was taking up precious space that could be used for someone else. And the kicker, one doctor looked my mother in the face and told her to go home and check for dirty needles in the trashcan because that’s the only explanation they could come up for the sores on my legs. I have a diagnosis now but the treatment is terrible, long and makes me feel like I’m on a tilt-a-whirl most days and I still haven’t feel relief yet. I am praying there is an end to this. I want to have hope.
Thank you for this. I kinda feel hopeful after crying because the doctor just said I was just being anxious after I had presented to her almost all the symptoms of that very serious illness and even presented the two lumps I had in my arms, thinking it is a swollen lymph node. But she said, it may just be another ordinary lump and I’ll just come back if it didn’t go away.
Thank you for this I honestly cried because I’m not diagnosed and I have extreme fantigue and fevers every morning and I have a million upper respiratory infections and everyone thinks it’s in my head and I’m thinking hmmmm but the doctors don’t think so. I don’t get my menstrual cycle anymore. I just feel awful, it sucks that people think your crazy and my life is slowly being ruined by being judged and I cry all the time, I do have good friends tho it’s mostly my family and I have an awful family. I’m not depressed I just wished someone would understand. I’m 14 and my mom is on debate if I just lie or if I really am like one day it’s omg I feel so bad honey next day stop you’re crazy and I have mixed emotions and don’t know what to think, my sickness has brought my mother’s relationship and I apart. We fight all the time, to be honest my grandma and my grandmas sister have some real problems and they are telling my mom that I’m crazy and I’m like you’re listening to the two craziest people you know over me who actually feels sick! She gets manipulated easily because she’s weak and I feel bad about it but in fights she uses it against me and I just want to have the same relationship where we don’t fight everyday and I love her to death and it sucks it really does!
oh god thats the exact same situation im going through. i used to be close to my family but ever since half a year ago i stopped feeling like myself. I went to so many drs n explained to my family every single symptom and why they should believe me but they never do and they wonder why i am so angry all the time when i am reminded of the pain im going through whenever im lookng at their faces. i have a lump in my thorat, low body temperature, weight gain of 1kg a month, extremely bloating, freakin tired everyday i have no idea whats wrong with me drs say it sounds like depression but NO im not having these because of depression im gonna bloody have depression because of these annoying symptoms that is wrecking my life n tearing me apart. nobody believes me and that sucks.
Thank you for this. What a relief to know I am not alone in that I have been sick for 5 years now, with neurological and hormonal issues. Prayer after prayer and doctor after doctor, and still have know idea what is going on. So very discouraged….
This brought tears to my eyes. Finally someone who understands.
I am a Christian, 21 year old female. Every time I complain about the amount of pain i am in i am told its all in my head or just to pray about it.
One doctor has suggested that it is fibromyalgia but there has been no real diagnosis. I am just in so much pain and a constant state of exhaustion and lack of concentration along with anxiety and an inability to sleep.
Hi Mia, I am a reporter working on a story for Vice about women with chronic pain who have gone undiagnosed/are dismissed by doctors. If you are interested in sharing your story, please reach out to me Allison.Lau@vice.com
Have you been diagnosed yet? I’m going through that right now but other than my RA and white blood count being slightly up everything is coming back negative. I’m constantly sick too.. feel like I’m dying
IM SO,SAD
History of ulcers that are not h pylori (can’t be cured and keep coming back). Painful Internal adhesions from surgery that led to 10+ ct scans (scared of accumulated radiation). Undiagnosed gallbladder disease that took years to get fixed. Undiagnosed bad root canal that couldn’t be seen on dental X-ray (only ct scan) that took a year. Cervical stenosis that prevents exercising and Jaw clenching that still hurts with night guard. There’s more but I won’t bother stating.
My last GI doc told me I was just sensitive, so I have no gastro at this time. Vitamin b and d deficient, but the vitamin supplements cause stomach pains (lots of foods do as well). How do I get out of this hole? I’ve been called a malingerer rather than just ackbowledged, never mind helped.
I did have Lyme – had to Dx myself and go to a second doctor for blood test! I have a science background so I’ve found a new primary and tried to have a more active role. She recommends naturopath, so even though I don’t believe in their techniques, I will give it a try.
Thank you, I needed this today. After 20 years of fighting through “something” And 15 of being told it was all in my head, I finally tested positive for lyme… only to have the family Dr say that I don’t really have it, and both her and my husband say it’s still all in my head, and taking antidepressants will fix me. (They havent, in fact made me worse, so I quit taking them) I go to a new Dr in 2 days, and am just praying that he will listen.
So sorry! I hope that your new doctor has insight and help for you. Btw, I have found it very valuable to go to a MD or ND who specializes in Lyme disease.
Thank you for writing this letter. It touched me so much I actually started crying. I’ve been suffering for years with painful lumps in my abdomen that don’t show up on any scans or tests and no doctor or specialist has been able to diagnose or give me any sort of relief for. I can’t even get out of bed half the time because the pain is so unbearable. I’m barely making it by financially because trying to get on disability is a Herculean task because all my tests come back normal so on paper I look healthy. In reality I can’t work or keep my house up properly or be the kind of mom I want to be. I can’t even get out of bed half the time. It feels hopeless and frustrating. Even getting a doctor to try at this point is like pulling teeth. I want to give up. But your letter gave me some hope. Some comfort in knowing I’m not alone. Thank you. I hope you are well.
-Meriena
What do you say to someone who asks “so what do you do?” meaning -where am I heading in a career. That one always stumps me and I am never prepared for it because it always happens at the most unsuspecting times- on the bus the other day. Upon telling them I a have been chronically sick for the last 3 years with no definite diagnosis, I am told, “you look perfectly well, young and healthy.”
Sometimes I feel like an elder watching all the young people rushing around with all their unlimited energy, 81 instead of the 21 year old I am. I say “its not about how you look, its about how you feel.”
I understand how you all feel. I have had numerous surgeries following breast CA but since the chemo I have always had pain and anxiety. After all the surgeries gone bad some finally took. At the time of my last surgery I was hit from behind in a motor vehicle accident so for now I still have chronic fatigue,pain, anxiety, depression and many diagnosis’s. Including but not limited to fibromyalgia, BiPolar 1 mixed, ADHD, PTSD, Bletherspasms, Vitamin D and B deficiency’, Hashimoto’s thyroiditis, Cervical degeneration, Menopausal symptomatic, as well as my recent bloodwork said I was anemic. I also have migraines when stressed and recently they say auditory delusions. (Though I don’t believe I am hearing music that isn’t there) I think it’s my neighbor but no one else hears it but me. I am on a cocktail of medications that do not work and have been suicidal on numerous occasions. They will not give me hormonal therapy because of the CA and my thyroid has a mind of its own and is passed off lightly as a tricky thyroid. I’m tired….So very tired of doctors it is even hard for me to get up anymore. I think “Why bother?” No one believes me. Before CA I worked and could deal with things. I get confused if “Do I need psych medication or is it my thyroid from the radiation ?” Now I just lay and either sleep too much or not at all. I’m so lost in a sea of what to do and do not have anyone to help me in the mass of confusion. I want to be a functioning part of society and it’s killing me I can’t. Bless you ladies. I hope you find your answers. I don’t know if I have the strength to keep looking for mine.
Hi, Shannon! I couldn’t pass up your comment without saying something, I live in the same kind of world. It’s dark right now. The aloneness is the hardest part. The Bus Drivers who take me to medical appts. and the Physical Therapists who actually do care are my Heros. I live from functional moment to functional moment. Not enough of them and my life is rolling backwards. I wouldn’t worry about the music. When I am way overstressed I hear it in any white noise. I’m rather proud of the variety my mind comes up with. It’s common and doesn’t mean you are nuts. If you can, try and remember when God pulled you through before.. I think it’s the long trials with no one with you that is so very hard. I will give you one verse Psalms 12:5. Hurry God, please. Wishing you well, Love, Cindy
Hormones, or the lack of hormones can cause all those problems.
Thank you for this wonderful text. I am so hopeless.. I’ve been dealing with a bunch of symptoms and pain since I was a baby but it really started in 2013, when I was 12. People often say that your symptoms are caused by stress, but to me stress and depression and other mental health problems were caused because of my disease. I’ve been bleeding in my abdomen for the past 5 years. It started with my first periods and it just never stopped. At first, was scared to talk about it because periods is a taboo subject and I was 12. I had to deal with it alone for 2 years. Ihad to go to school everyday while having an hemorrhage. It was traumatizng. I felt so much shame and even worse, I didn’t feel like a woman or a human in general. Spending my days in wet clothes made me feel disgusting. I couldn’t always hide it and I’ve been bullied a lot. People told me that I was too disgusting to have a place on earth. I also had to quit elite swimming a sport I’ve been doing since I was 2. I was very depressed and I finally did it.. I tried to kill myself in Nov, 2014, at age 13. I still don’t know why I called an ambulance but I did it and saved my own life. When they asked me why, I decided to talk about it for the first time. But sadly, they ignored it. the whole hospital thing failed. The “suicide prevention” team tried to make me feel bad about my attempt by making me feel guilty. I only had an ultrasound. The doctor found something but said “you’re 13, it’s nothing wrong!”. The guilt and shame was so horrible that I didn’t talk about it until I was 15. My doctor finally gace me the pill but it did nothing. I tried another one : nothing. I asked for a third one : almost nothing. Insead of bleeding 4weeks/monh, I was bleeding 3w/month. I tried a lot of things to stop the bleeding but nothing worked. it kept getting worse. I now have daily migraines and some stroke-like episodes. One leg hurts.. I can’t take the plane without crying in pain and fainting because of that leg. I’m sorry, I didn’t realize how much I wrote. Now it’s 2018 and nothing has changed. It keeps getting worse. I has to be homeschooled because of the anxiety and the impossibility to get up. I can’t run, jump, exercise, or just walk for more than 15min without having an hemorrhage. In the past 5 years, I only had a brain MRI, two ultrasounds and 5 blood tests all wrong because of the pills I take everyday. I take an average of 7 pills/day an nothing is working. It sometimes helps, but it doesn’t work. The pain makes it hard to sleep. It’s ruining my life. My dream was to be a doctor, but I will never be able to do it because my doctors don’ care about me. Not all, hopefully.. my dermatologist and my pain doctor trust me. But I’ve only seen them once. My family doctor.. I don’t know. He doesn’t listen to me, but I think he tries to help. My main doctor (endocrinologist) doesn’t help at all. She’s rude. She doesn’t trust me because I’m 17. I think I have Von Willebrand disease. I recently got tested but the test is wrong because of the pills I’m taking. They don’t want to do it a second time. We “know” I have vWD since I got surgery and it didn’t go well at all because they couldn’t control the hemorrhage. But anyway.. Right now I am hopeless. I am bleding 24/7 since 1 month & 1 week.. My family doctor gave me a strong antihemorrhage but it’s not working.. it’s not responding to any treatments anymore. (birth control pill helps to reduce my periods, but it’s not only period blood.. something in my abdomen is bleeding). My family doctor thinks it could be a tunor or a growth that is bledding but didn’t order an ultrasound or something to prove it. I’m seeing an OB/GYN for the first time in two weeks but I’m scared.. I tried my 5th birth control pill and it’s still not working. It was the last one, my main doctor says it’s impossible. I don’t know what to do. I did everything ! I even tried to kill myself !! People don’t trust me because I’m 17 and they’ve never seen that before. I am sorry for this very long test. Please don’t read it. I just needed to say it out loud, I’m sorry. Oh ans sorry for the mistakes, English isn’t my first language. Thank you, have a good day 🙂
Hang in there! Trust in God! He will carry you through this!
Im a 17 year old kid and ive been suffering with horrible symptoms ever since i was 14 years old. I get ringing in my ear and floaters in my eyes and have a constant headache and fatigue and have been to doctors saying that it was nothing. Im so sick of this no one understands i can barely stay in school because im so tired. My basketball coach and friends dont no why im missing but its because i cant handle what im going through right now all i want to do is sleep all day. I want to tell them but its hard to tell people without crying and i dont want them to think im soft. Its so bad right now i know there is something wrong with me but they just treat it like its no big deal.
Mark, I’m so sorry to hear this. I hope that you find someone to listen to you and take you serious soon. Keep holding onto to hope! And it’s okay to cry. Life is hard sometimes.
same man. the thought of it makes me cry and i usually dont cry easily. none of my friends have ever seen me cry before lol and when i say i do because of these i dont think they believe me either. i have been gaining weight 1kg per month and have severe bloating which honestly lowers my self esteem coupled with my severe acne on my face. i used to pride myself on my skinniness and pale skin colour but now no outdoor lessons tanned me (im asian so its really hard to get rid of the tan under such sun for some reason) and my weight lol the scale keeps creeping and the doctor asked me if i want a dietitian. i almost flipped. im eating perfectly fine i have been eating the same for the past 15 years of my life wtf do u mean? i keep sleeping long hours my parents are really annoyed and angry and saying i have no time management because i end up staying up late to finish my homework nobody can see im desperately trying to stay alive above all these pain i really want to stay awake in the day and not sleep so i dont stay up late at night but i cant im too tired for no reason i just cant and i just sleep.
used to be a straight As student but life is havoc now lol
people treat me like a joke and the doctors dont believe me
Hey,
you prob don’t want my advice, so sorry if this is unwarranted or offends anyone but honestly dude you should tell your coach, like if they care about you, and they do, they will understand if you cry. Once they understand what you’re dealing with, and how painful it is, they will definitely not think that you’re soft. Reach out for help, help others understand, and it might help ppl take you seriously so you can get help and things will get better. I was in a similar place and am speaking from personal experience.
It’ll be okay eventually, it’ll be okay faster if you reach out for help. hope things get better soon.
I know how depressing it can get! Had to fight this for over 30 years now. But still no answe..Was dignosed with Fibromyalgia and Me CfS..degenerative joint and Deteratiom of the Spine and other stuff. But still terrible pain! But also was told that I look healthy..so I just keep hoping and praying..
i really love this page because reading the comments make me feel like im not alone. At first i was skeptical to comment because im afraid that people i know irl may pass by this page and figure out its me commenting but at this point in time i dont really care anymore. I thought i had a thyroid problem. I only took TSH and T4 tests despite telling the doctor i want others and they completely cross out autoimmune thyroid just because my TSH and T4 is fine but hasimatos require another test. but now that i think of it i have no idea whats wrong with my body anymore. my symptoms are severe fatigue making me sleep during the day, significant muscle pain all over my body, tingling and numbing of hands and legs, loss of appetite where i skip meals but still feel full, early satiety, mental fog, lump in throat, irregular periods, pulsing throughout body, abdominal bloating and the worst of all is weight gain of 1kg a month. its ruining my self esteem. nobody believes me. i think i might end up writing an essay but i have so much to say yet theres nobody i can talk to in real life. everyone thinks im just overthinking but im not. i swear. im dying inside although i look fine outside. i used to be really close to my parents but ever since i stopped feeling like myself i just keep getting so irritated by them like why wont you believe your own daughter. i explained all my concerns to them so many times, and explained to them why their assumptions about me were wrong BUT NO THEY STILL DONT BELIEVE ME THEY THINK IM DOING IT BECAUSE I HAVE A TEMPER NO OKAY im dying inside why would i do this to myself. my friends dont really care i dont expect them to. its not their life and they arent the one going through the pain anyway. what is wrong with me. i dont know. but i know it has something along the lines of thyroid/vitamin b defiency/iron deficiency/celiac diease/multiple sclerosis that kind of thing. i dont know what category its called though. its really great that they are under diagnosed. i really hate myself at this point. im getting so ugly and fat. i die a little more inside when people tell me “oh hey u look fatter.” no. its more than that. i cant count the number of times i cried about this. i can cry just thinking of it. i nearly cried out in the doctors office when my thyroid came back normal because now i have no goal in life i dont know what to do i dont know whats wrong with me my grades are suffering, my mental health is dying, and im so sick and tired im collapsing. and lastly i love all of you, reading the comments here and on other websites makes me feel less alone. i hope that we all can find a good doctor, get a legit diagnosis that really explains whats wrong with us. and not something like depression which its obviously not. more like we get depression because of the symptoms.
I am so sorry you feel this way. You are absolutely not alone, as you can see from the other similar posts. I am also going through the same thing and it is extremely isolating especially when your family is not only unsupportive but strongly critical. I have extreme fatigue and have recently had another blood test (had one a year ago and all said it was normal) for TSH which this time eas elevated. I have a follow up soon, but reading info about hypothyroidism matches my symptoms so well- EVERYONE TALK TO YOUR DOCTOR ABOUT YOUR THYROID JUST IN CASE. Hang in there and do the things that make you passionate, believe in yourself and know you have so much to offer the world and other people, and vice versa.
Hi, I am a reporter working on a story for Vice about women with chronic pain who have gone undiagnosed/are dismissed by doctors. If you are interested in sharing your story, please reach out to me Allison.Lau@vice.com
I know this is a year later. But have you found any answers?
From: E
To: idontknowwhatiswrongwithme
You feeling any better? Just stumbled onto this website and it is a year later but I read your story and can’t tell you how it touched me as I too have the same symptoms and have been battling this journey alone.
This article made me feel alot better. I sought something because i am more recently finding myself calling out of work. This is new to me. Ive been dealing with an undiagnosed illness for a year and a half. Possibly adrenal fatigue and sleep apnea. Currently working on finding out. But it has completely interrupted my lifestyle. Best wishes to all????
Hey,
you prob don’t want my advice, so sorry if this is unwarranted or offends anyone but honestly dude you should tell your coach, like if they care about you, and they do, they will understand if you cry. Once they understand what you’re dealing with, and how painful it is, they will definitely not think that you’re soft. Reach out for help, help others understand, and it might help ppl take you seriously so you can get help and things will get better. I was in a similar place and am speaking from personal experience.
It’ll be okay eventually, it’ll be okay faster if you reach out for help. hope things get better soon.
I have been very ill for the past 6 years (off and on) I go through bouts of feeling great and BOOM I am very ill so much so that my body starts fighting itself and have several times become septic and hospitalized (which by the way just want to stabilize then release) nothing ever figured out or fixed so I go about my business when I start feeling normal again and when I least expect it happens again… This most recent time which was a few weeks ago the whole nine Ambulance hospitalized and again I am still sick as hell nothing has been fixed this time I am not only sick but my mind has been going into a really really dark place!
Today I found myself telling my children how much I love them and that I will always be here with them whether I’m here or not…. then I went for a long drive into the woods and sat in my car with a loaded pistol….. I am so tired of being so sick and not having control of the way that I am feeling ???? today was the first day in my life that I have felt so broken and defeated it took me 2 hours to talk myself out of the darkness the thought of suffering in my own home had me at my end!! Thank goodness something happened made me realize that this is not my time, but how do I stay away from that dark place?
I am so so sorry for all of the suffering you are going through. I’ve been there – the undiagnosed health issues – the despair of ever getting better. I was extremely sick this last year and had many hospital and doctor visits. Don’t give up!! Find a team that can help you! This can look different for everyone. I was able to get help for my health issues with a very experienced naturopath. Even just having a name to give my illness was so helpful. Second, a friend with chronic illness said she is going to counseling specific for those with chronic health issues. I love this idea! We can cope and have hope and find goodness in our life – even with our pain and stress. Know that those dark feelings will pass. No matter how dark you feel, morning is coming. And please! Don’t hestite to reach out to a hotline. You are needed and wanted. ❤️ https://suicidepreventionlifeline.org
No doctors will help me. It all started with a bump on my breast, got it cut out because it got infected, 2 months later started having chest pains, 1 month after low back pain and irregular period, chest pains again and fingers were stuck, 2 weeks later right side of mouth started to pull down, I’ve switched doctors twice because I just want some tests done and all they want to do for me is physical therapy, I feel like I’m dying, I know something is wrong. Why won’t they just help me. I’m so tired of feeling like this…
I’ve been sick for 3 weeks and I’ve done tests and gone to the doctors multiple times and they say its just a virus that lasts 3 days but I’ve had symptoms 3 weeks and others seems my own family don’t believe me. My mom tries to help me but it just doesn’t do anything
I was vaccinated to get masters degree and bomb 2 days later symptoms of Morgellons. Left to suffer 7 years in illness, wounds, a lot of hair loss. Would think the big gaping gaps of hairloss would have alerted something is wrong but nope instead I’m delusional and have munchausers (doing it to myself). OMG never been in so much agony and despite that I’m surprised I’m still here. I’m angry this ruined my life and by the way doctor smart Fer you caused this by vaccinating me. Don’t believe any researchers either. Most are bought!!
I am going through the exact same stuff…except I am being forced to do everything in my home because, “I can’t hind down a job” sometimes I cry while I’m doing something as simple as vacuuming because I’m in so much pain and everyone around me just ignores it becuase the doctor says I’m fine. I don’t know how my feet are so swollen i cant even wear shoes and even my slip ons are hurting them..I don’t know why I’m in so much pain or why I’m alwaysago tired but everyone just says i need to stop being lazy and get a job..sometimes i have to say I’m going out to look for job’s and just sit in my car and cry because i know when i go back I’m going to have to wash those dishes and unless i pass out I’m going to have to finish them even if i hurt or i will be kicked out and no where to go with my 8 year old he is the only one who will finish something for me and i try so hard not to let him because he’s just a baby himself hes really the only reason i keep pushing on because i hate everything about my life and myself because everything i have tried has left me penniless with no one to understand why i cant wake up to my alarm because I’m so exsausted my body won’t let me i csnt wake up unless I’m literally shaked and I even tried crystal meth to see if it could help me get through any of it and it helped but i felt 10x worseafter so i only use it when I’m being threatened to be kicked out if i don’t get this house up to par. I’m so tired and so depressed and all i want is to be able to be wellenough to leave this place and give my son the life he and i deserve. But as of right now there seems like no escape but I have to force myself to just pretend I’m ok or they will tell me to quit faking or to stop trying to get sympathy because there isn’t anythn wrong with me…I have to go because i only have an hour to finish up and i am trying not to throw up so thank you for just listening sometimes just being heard help me push on …to all of u out there going through this just try to take things one day at a time and realize that those that hurt you don’t know what they are doing and that they are cruel this way because of how they grew up and it’s not their fault they were taught to be so unloving i try to understand why they treat me this way butb its mostly because they were never shown compassion when they were sick so they feelñ for me. I just hope i can Eddie this hell one day before i pass
I have been extremely fatigued, apathetic, unmotivated, absolutely no energy, nauseated, dizzy, light headed for 11 years. The doctors tell me there’s nothing wrong with me. Something is definitely wrong. I don’t know what to do and I’m getting to the end of my rope. I always say I won’t commit suicide because of my son but I’m no good for him anymore. What happens when you’re basically worthless? There’s no point for me anymore.
Lauren,
You are worthy of joy, health, and most of all, hope. Don’t believe the lies that say you are worthless because of your struggles. I believe you when you say there is something wrong with your body. You know it best. I also know, from lifelong struggles with chronic health issues, how hard it is to cope. I have some links below for suicide prevention, please check them out. But please also know that despite going through some very difficult times when I really thought only a life of suffering awaited me, I have seen hope in a gradual improvement of health, and more then that, the beauty of a life even when it contains struggles. Take care of yourself. You are worth it.
https://themighty.com/suicide-prevention-resources/
https://afsp.org/find-support/resources/
Hello lauren. I am also searching for the answers for myself. I think i will try testing first the hair samples, my hair samples for micronutrients. For deficiency etc. Please keep fighting, but give yourself a chance also. Try holistick approach maybe if this example of hair testing for balance or imbalance in micronutrients can be called one. Also .. maybe a psychiatrist also.. Please try different things . xo
This is awesome… I quit going to the doctor for years due to them always saying I was fine in high school as well… Found out some test results recently that showed back then I was not fine actually… So here it is 2019 I have been in and out of the doctor since may, All my blood work and urine tests are always abnormal or fluctuating… I have began getting infections non stop. The doctor I have been going to has been very compassionate and seems to care, but also seems to be doing the bare minimum, my test results are now showing my kidney function indicating kidney disease, etc… When I asked for cancer blood work to be done just to be sure (due to family history, and persistent symptoms) she states “we’ll do another complete blood count, urine sample, and basic metabolic panel…” So I have had each of those done every single month I’ve gone.. like I said still off…. She recommended I go see my primary care provider to receive a better diagnoses since she does not specialize in full body,, etc.. she has done all she can in following up with me and keeping track of the things going on… So I went to my primary care provider.. he said come back in 6 MONTHS.. ugh. Said my blood work was fine, I asked him for a copy of it and reviewed it myself, come to find out, all the results were in fact not fine. I then go back for a follow up to my other doctor who I’ve been seeing in general but like I said she is not a primary care provider, she is actually just my gynecologist.. she has now referred me to a cardiologist and a new internal medicine provider in her network that will have access to all my records and charts & tests she has been doing as well so maybe that will help… but for now, my symptoms are getting worse, I am having extreme troubles sleeping at night now, my body is overly exhausted but everyone thinks I’m just fine and thinking I’m just a hypochondriac since I look fine on the outside and not crouched over in pain 24/7 like most people would be if they had all my symptoms I have as well.. It is super stressful not having a diagnosis.. I am still trying to do everything I have do to daily in order to not come off as lazy or crazy. But it’s draining me even more than nobody is on board with me, other than my mother who knows our family history as well and has noticed a significant difference in just the way my eyes look and the color of the whites in them.. I wish more people we’re open minded and realized that some have high tolerances and not everyone lies in bed 24/7 upon feeling like crap. Unfortunately I have too many responsibilities to where I cannot or else I would because my body needs it… I messaged my doctor on the app to ask if the test results and symptoms I have should really be a concern or am I literally being a hypochondriac.. I hate feeling crazy and others making me feel crazy like this!! But she has been concerned about some things as well, I just don’t understand if my results and symptoms could possibly indicate something life threatening, why is nobody taking action?… Idk !! Good luck to everyone else as well.. I hope you all receive the proper medical treatment and diagnoses and I hope you have some people who will be on your side in following next steps in order to receive what you need for peace of mind and health.
Thank you for this article. It was desperately needed. I am 22 and a couple months ago I began having symptoms of Dysphagia, which is difficulty eating. I have not eaten anything solid since Halloween. All I have are Ensure drinks, yogurt, gum, and juicing fruits and veggies. This illness has gotten in the way of me finishing college and taking care of my sick mother. In addition to being tired, I’ve lost so much weight that my body is almost unrecognizable and the nerves in my throat often times feel tight around my throat. My gastroenteroligist thinks it is caused by the acid reflux I had this past summer, but I’ve undergone an endoscopy and a Barrium Swallow Test both of which claim that my esophagus is functioning fine. He does not know why I am feeling as I am. That’s the frightening part, that no one can see what I feel. I am afraid of having to live the rest of my life with this. Watching all my friends graduate college, get good jobs, eating, drinking and having fun while I sit at home trying to keep from crying is frustrating as Hell. My whole life has been shattered. I pray and pray and pray and I still feel alone. I wish the lord would just take me already and put me out of my misery.
I’m pretty sure I’m dying. The condition has been sucking life out of me for years now but the process has accelerated in the past few years. Left side my body going numb, losing function, lots of pressure in left kidney area on spine, bloating, digestive issues, was told my left kidney was just lobulated(a genetic abnormality that causes no harm)but I’m pretty sure it was adrenal cancer that now has metastasized to the spine and other areas. I’ve been one of those unusual cases I think that didn’t show classic signs and remained very functional so I can understand why it was difficult to diagnose. But I think if the rheumatologist had listened to me recently and did the bone scan it would be apparent. I feel like I’m going crazy. I so want to be wrong but I know I’m not. I just need the diagnosis now so I can get palliative care onboard or move to a state that has death with dignity. I’m so exhausted by this and it has affected my mind in the most bizarre ways. Just ready for it to be over. My love and empathy to all who are dealing with similar. Was a nurse myself and have much admiration for the medical profession but we still have a long way to go. I’m single, never been in love and no really close relationships in life, have family and we love each other but no one is able to help me with this. They simple aren’t in a state financially or emotionally that they can deal with this. I’ve not revealed the extent of it(how can I with no diagnosis). I’ve felt very alone most of my life but this is at a level I find unbearable at times. I probably would have already ended it if I had the nerve. Only because I have some savings to last for a bit have I not I think. Now traveling to spend some time with family before whatever. I actually want the diagnosis so I can blow that retirement savings(not a whole lot)to see and do somethings I’ve always to wanted to see/do while I can. I would so like to feel the foolishness of being wrong and having over reacted to a chronic(but not terminal)condition but I’m pretty sure I’m right. By the time it’s apparent I think I’ll be in terrible pain and invalid. Terrified of relying on medicine to care for me when they haven’t even been able to diagnose me.
Im crying while reading this,and all of the comments. Im only 29 and have been suffering since I was 23. Over the years tjings are just getting worse and worse. I have been to 3 doctors,that dont care and just hand me pills,or chalk it up to anxiety. Blood work is fine and they want to waste time and money,doing test I know I dont need. Mu symptoms include,sever heart palpitations, dizziness,bad side pain(mostly on left,deep under ribs.),throb in stomach, nausea ,body aches,ibs like symptoms,and asthma symptoms at times. I can never get all of my symptoms addressed. I have two little girls ,and worry daily…I won’t be around for them. I pray we all find relief.
I had come across your message as I look for help dealing with people who think i’m crazy and had told me last night, I should consider seeing a psychiatrist. I have nothing against a psychiatrist but I’m fight with a parisite infection. Two close friends are able to see the things I show them while family, my boyfriend and even a couple Er doctors think I’m going crazy… Last night was a hard tipping point as some came over telling me they wanted to see first hand but I bring things up and they dismiss it immediately… Then continue to suggest the psychiatric or even drug rehab. I don’t do drugs and they continued to say images I’ve sent we’re photoshopped..my photoshop talents died long ago, if I send like a picture, the most ill do is enhance the image so they can see what’s there… My close friends, we rarely see each other and communicate by phone a lot but with the people who are around (and it’s mainly to disprove, or even just for themselves ) just keep telling me I’m acting “crazy, I need to put this to rest “ or even tell me if I go to an er there’s
A chance I could lose my son because the doctors will think I’m crazy… This started about 8 years ago when I ran into an issue with health insurance, it took legal and to set that straight just last year… I had started to look for answers then and i’d repeatedly would be diagnosed with back to back UTI’s. There’s only one Er doctor that encouraged me to keep looking for the answer until I get this problem nailed in the head… Then there’s doctor’s that have asked if I’ve been partying all weekend long and just wanted a really good “trip”…. I am not a drug user, and having people around me, believing i’m doing doing them is very discouraging… Then my bf will tell me u need to stop, he’s not going to entertain this anymore. That he thinks I’m making myself panic… I’ve stayed as calm as I could through all of this… I’ve tried helping those around me, understand the strife of a parisite infection/disease, but they tell me that they don’t see anything or it’s just (something simple) and then continue to tell me they don’t know what to even look for when it relates to parasites…I went as far as telling them that when infection is new parasites are microscopic, but before I can inform them that as one stays in a host for a very extended amount of time, they grow like any other being, they interrupt and continue to repeat that.. In a couple instances it has made me feel crazy, but then a symptom appears again and I’m stuck wonder what to do. I feel alone, and my boyfriend and I aren’t perfect but he makes me happy, when I’m going through a flare up though I’m just lost, being left feeling alone and it’s crushing. I’m happy to have found your article. It’s helped me feel that I’m not so much alone but that there will continue to be struggles. I enjoyed your reading and happy that you and your friend finally got your diagnosis/treatment after facing difficulty.
Hey jessica <3 I am going through something I assume to be VERY similar. To the point now where I am coughing them out and throwing them up and it IS HORRENDOUS AND TRAUMATIZING AND COMPLETELY ISOLATING AND SCARY AND LIKE LIVING IN A NIGHTMARE. I take pictures of EVERYTHING now, which can be so incredibly hard to do just from a psyche standpoint. I started getting really sick about two years ago and it has slowly and severely progressed to this point. This past week has been one of the worst flare-ups I ever had.
I, too, have been repeatedly accused of acting Manic , insane, crazy, drug use, etc.
Back in February I had a male Dr. convince me that I should be on Zoloft. Being so desperate to escape this nightmare, I agreed. But all it did was further prove to me that I am not crazy bc the shit was still happening worse THAN EVER. I ended up in the ER 2 weeks later, hadn't been sleeping, super malnourished from consistent vomiting of horrendous things. I thought I was holding myself together well when I tried to show the ER staff photos of what was coming out of my body.. to try to make them understand wouldn't you be feeling a little "manic" (Their term, not mine. I prefer TRAUMATIZED) if that shit was coming out of your body too!!?
No one cared, they drugged me with a sedative even after I repeatedly refused as well as ran a full tox scan on me, which I assured them would come back clean. It did. They still kept me drugged for the next 8 hours until I finally came to a bit, ripped the IV out of my arm and said I am leaving right now. I was scared they were gonna take me to psych ward.. mind you this in during covid when no patient advocates could be present (my fiancee brought me there but they made him sit in the parking lot he couldnt even stay in the empty lobby… No one informed him of any of this either just let him sit out there for 8 hours overnight in a blizzard like no joke)
Anyway, long story short GIRL I GAURENTEE YOU I FEEL THE DEPTH OF THIS SO FULLY. I have gone back and forth so many times this past year between AM I CRAZY THOUGH!!!? -usually when I having a "good" week physically and not in the thick of it…. then It starts flaring up and its like BAM NO YOU ARE NOT FUCKING CRAZY THIS IS A NIGHTMARE. I have mostly shut myself off & isolated from all my friends and family who haven't already seen/heard from me first hand about this. I cant handle sharing with another friend and feeling so unbelieved, and ashamed and disgusting…. I have seen countless specialists/ dr.s / etc and actually just had a big let down this morning from a super expensive functional medicine dr. who emailed me this morning in response to some new photos and just said "I have no idea, try this guy……" Let's hold onto hope together <3 Feel free to email me if you ever want to chat, discuss symptoms and history, or compare photos, I have SEEN IT THE FUCK ALLLLLLL. I might not have the answers but I will believe you, and help you research. You cant gross me out at this point I PROMISE.
-Nika
email: nikanorrisart@gmail.com
Thank you for this article! For the past year I’ve been having fainting spells that have yet to be figured out/diagnosed. I’ve gone through numerous heart tests, had external heart monitors as well as an implanted monitor, gone to a Neurologist who ruled out any type of seizures, seen a Genetics specialist, had countless blood tests done, was tested for POTS (which showed to be negative)….. I feel like there is little left to be done/tested for. I’m an otherwise healthy person in my 30s. I’ve done tons of my own research but when I bring up certain disorders or syndromes to doctors, they usually say ‘you didn’t have the qualifying symptoms typically seen with that’ or ‘everything looks normal with the results of this test’. It is frustrating to say the least! I appreciate your empathy toward others who are struggling with being undiagnosed and still waiting for answers.
Im not going to go into details because I would just be repeating the same thing that everyone else has already said (same problems, no answers). I just wanted to let all of you know that I am in the same position, have been for 3 years, feel like I will die soon, im mostly bedridden, a hot mess and that you guys are not alone. I pray that each one of you get the answers you deserve and can find peace in this cruel world of suffering. God bless all of you!!!
I too am in this category have been struggling physically for three plus years now after a car accident. I know it is taking me. I have struggled and fought for years now as a single mom to find out what is wrong to no avail.I get brushed off so much that I’ve just stopped fighting because the emotional effects of being told I’m crazy further wound my condition. If anyone can send healing prayers to me I accept. I need a miracle now.