To the Suffering Undiagnosed, I Know You Aren’t Crazy (Even if No One Believes You)

 

Are you still looking for answers for ill-health without help and understanding (or know those in that position?). This letter is for you. 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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I love beautiful and simple food that is nourishing to the body and the soul. I wrote Fresh: Nourishing Salads for All Seasons and Ladled: Nourishing Soups for All Seasons as another outlet of sharing this love of mine. I also love sharing practical tips on how to make a real food diet work on a real life budget. Find me online elsewhere by clicking on the icons below!

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Comments

  1. cheeeki-breeki says

    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…

    • FED UP! says

      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!

    • Jeana neely says

      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

    • Anna says

      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…..

  2. Alan Green says

    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.

  3. MIchelle Robinson says

    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.

    • Ann says

      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.

  4. Kaley says

    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

  5. Cindy Baker says

    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

  6. Colleen Morgan says

    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.

  7. Will do it myself says

    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.

  8. Kayleigh says

    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!

  9. ALana says

    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….

  10. Mia says

    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.

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