When People Don't Believe an Illness They Can't See
I am 38 years old. I have been lower functioning or unwell since I was an infant. A week and a half ago I got my first formal, unequivocal diagnosis of a condition that makes a lot of sense to my symptoms and lower functioning — postural orthostatic tachycardia syndrome, and I may soon be diagnosed with Ehlers-Danlos syndrome.
It’s a very strange thing to go your whole life being different, lower functioning than your peers, often in pain or very tired… and not know why.
It means you don’t have a name for what makes you different. And if you don’t have a name, then no one really understands it, even you don’t understand. So you become accustomed to your symptoms. You adjust. You learn to automatically manage. What else is there for you to do?
Example: When I was a kid I used to love putting bandages on my sore joints because it helped ease the pain. No one else, apart from my parents, really understood why I liked putting them on, so it looked like I was just “dressing up” — pretending to be a patient with broken bones. When I was a teenager I would go to school with joints wrapped in bandages and sometimes crutches to help me walk, and other kids would frequently laugh at me or tell me they thought I was faking.
Even some close friends laughed at me when I wrapped my sore joints up.
Twenty-five years later we now know that strapping my joints when they’re sore helps the pain because my joints are unstable and the bandages/strappings stop the joints from wobbling around. There is an actually reason why it was helping all those years ago.
I have words and names for it now. Now it all makes logical sense. This a wonderfully helpful thing to have.
But when there are no names, no logical sense…
That is hard.
Back then, to me, I had physical symptoms that made me different.
To other people, I had behaviors that made me different. All they saw were the behaviors.
To me, I had pain and fatigue I was dealing with a lot, so I couldn’t do as much or was slower at what I was doing than other people.
To other people, I was just slower or not doing as much as other people.
Being slower or not doing as much tends to just be translated as being lazy.
Being labeled as a lazy person while you’re trying to manage pain, fatigue, brain fog and continuously almost passing out is kind of a blow.
Actually, it’s a huge blow. Because of the physical symptoms I experience, I already feel like I don’t do as much or as good as other people. I already wonder how in hell other people get so much done or manage to maintain their energy like they do. I already feel like a failure. I already feel inadequate.
So when people label me as lazy, it feels incredibly painful and confusing. When people say it enough, though, I can start to believe it. Maybe you are just lazy? Maybe you are just not trying hard enough?
So I push myself hard again. I set goals and go at them with the same determination everyone else does.
Then I feel my body getting more and more tired, then the pain, then I just need to lie down.
Then I can’t talk anymore. I just need to lie quietly. I need to let my body try to put itself back together.
And while I lie there, I listen to all those opinions of other people, fly around inside my head: You’re a failure, you give up too easily, you don’t try hard enough, you’re just weak.
And then I think: “Well, I did give up, I did fail, I do feel weak… but, I really did feel like I tried my hardest.”
What a sad reality to be in.
I have been in a cycle of trying and failing my whole life, because there was no name, and without a name it seemed more logical to me to believe that I was just being lazy than that I had some mystery illness that no doctor could find.
I am lucky that I had my parents who were very supportive and a few others who were understanding. But there were mostly a lot who struggled to understand my position and struggled to believe in something they couldn’t see.
When people cannot see the physical symptoms someone is experiencing, that are creating the “behaviors” they are seeing… when someone is only seeing the behaviors and not looking for (or open to hearing) an explanation, then we find ourselves deep in misunderstanding territory.
I saw my new-ish specialist yesterday. He seems to be a lovely man. We briefly discussed the frustration of going so long without getting a diagnosis. He explained that in the medical world it is more common to see an uncommon symptom from a common illness than it is to see a common symptom from an uncommon illness — basically that they don’t see rare conditions that often, so they shouldn’t be looking for rare conditions, they should be looking for common conditions first.
Now, I get this, and I agree, please by all means make sure I don’t have diabetes or arthritis before you go looking for something rarer.
But please do go looking for the rarer conditions after you’ve seen that I don’t have the common ones.
All too often we get the all-clear for the common illnesses and that’s it. There are no further investigations. Or maybe a few, but then it just dissolves into nothing. It’s like the belief that we still have a condition, a cause for our suffering, just isn’t there.
Hell, even just the belief that we are still suffering despite not being able to find the cause, would be nice.
If my husband carried me into the emergency room one day because I could no longer feel my legs, they would admit me and run tests. Maybe they’d start with the “common” illness tests, but once those came back clear, if they could stick a knife in my leg and I didn’t flinch… they’d dig deeper. Because the knife-in-the-leg-without-flinching would make them believe that there is something wrong.
They would keep looking and keep looking for answers. They would go rarer and rarer. Their belief would not waiver.
Even if they didn’t find out what was wrong, they would believe me.
That is what is missing for too many invisible illness warriors.
That is what needs to change, both inside and outside the medical profession.
We need belief. Too many patients are drowning in a sea of patient blame and disbelief.
It has to stop.
A week and a half ago I got my first unequivocal diagnosis. I have evidence now. I have my equivalent to the knife-in-the-leg-without-flinching that is now making it easier for doctors and others (even me) to believe my symptoms.
But 37 years is a long time to wait for the medical community to fully believe me.
It’s a long time to be in that try/fail cycle.
It’s a long time to doubt myself.
It’s just a long time.
Follow this journey on The Invisible Warrior.
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