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,
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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