Over the last few years, I have visited many doctors from various backgrounds and have come to realize that when modern medicine doctors face a challenge they cannot give answers to, the tables suddenly turn onto the patient. Suddenly, we are no longer looking for what the problem is, we are claiming insanity on my part.
The parting sentiments usually flows like this, “Since all the tests I have done are normal, and other doctors seem to have found the same results, perhaps the problem is all in your head.” Of course they don’t use these exact words, but I think I would have preferred those words over the “diplomatic” ways they try to tell me that I may be insane.
Then my question becomes, why should the doctor’s inability to find what I am suffering from turn into a mistake on my part, and not just a mistake, a flaw that questions the validity of my sanity?
Unfortunately, doctors are not the only ones suffering from this delusion, if I may call it that.
See, I cannot explain my illness because it has not offered me a name to understand it with. Even though I put fair effort in trying to find it. I understand my symptoms, what causes them, how they begin and what to do to keep them at levels 1-3, and what steps to take when they elevate into higher stages.
That I know.
What I don’t know is, what I have, how it began and why it began.
Those are questions I cannot answer.
How I Deal with My Illness:
I try my best not to talk about my illness to people unless they know something about my health history, inquire about it, or if my illness interferes with scheduled plans. This is my general rule on how to interact with my illness when third party individuals are involved.
For the most part, I deal with 3 different groups:
1. I have the group of people who have seen me at my worst and therefore don’t ask questions. Seeing is believing.
2.I have the group of people who have seen me in alright terms, have heard about my illness and have some questions about it.
3.Then I have the people who only see me when I am in good terms, on good days, have heard about my illness and have many questions about it.
Usually group 3’s questions are coated with assumptions such as ‘if the doctors can’t find what it is, maybe its all in her head’. This group has been the toughest on my sanity. Their attitude and general demeanor towards my illness makes me feel as though I needed to prove my illness to them, perhaps if they see me at my worst they will understand the severity of my situation.
Mind Over Matter?
Perhaps I wouldn’t have minded group 3’s thoughts if those thoughts did not turn into conversation pieces. It doesn’t really bother me if people talk among themselves regarding my illness. I have no control over that.
What bothers me, is when the conversations are directed to me … as advice.
Usually as a mind over matter topic.
“It’s all in your head. You ought to just tell your mind you are am not sick and see what happens”…
I suppose if I tell my mind that there is nothing wrong with me, the allergies, flare-ups, brain-inflammation, bronchitis, asthma attacks, swollen glands, aching joints, nausea, vomiting, fatigue, seizures, panic attacks, sharp shooting flutterings and everything else will miraculously go away.
Perhaps I would not have minded their ‘advice’ either, had it not wounded my self-regard and tested my sanity. Maybe it would have been easier to forgive their conversations had they not tried to convince me that I am truly at fault for understanding that I am ill, and making me feel like I need to prove something to them. I would have forgiven their words much sooner had the words not made me question my own mental capacity, doubted my mind, mistrusted my body and learned to listen to their words rather than the very loud cries for help my body screams.
What People Need To Understand About Invisible Chronic Illness
What most people need to understand is that someone with an invisible chronic illness has no control over their pains, their reactions to things (environment or otherwise) or the timing of an attack (I’ve had seizures at some very unlikely times and places).
What we have control over is WHAT we do about it. What we choose to do about that seizure that happens at work, that full body inflammation that happens at a store, that mysterious 105 degree fever that popped out of no where while hanging out with friends.
When the event happens or starts to happen, we have a choice on how to deal with it, and most of the time run a fast cost analysis in our heads to see what the best course of action would be. We need to maintain the lowest level of physical damage and preserve the least amount of pain.
For instance, sometimes when I have a seizure, it starts with everything becoming blurry and I get extremely dizzy whether I am sitting or standing. Then my body becomes extremely heavy and difficult to move, then come gentle convulsions that increase in severity as the seconds progress, sharp shooting pains all across my brain and body, along with difficulty speaking, followed by full body paralysis. (This is not what all my seizures look like, but some look like this)
I know that I need to have someone help me lay on my right side and the convulsions will subside and if no one is there, and laying down isn’t a safe choice, I remain as I am to prevent falling and hitting my head. With time I will regain control over my limbs, speech and everything else. I have not studied whether this is the correct procedure, but it works for me. I usually knock out soon after the convulsions stop, and when I wake up I have extreme fatigue for a few days. A big seizure usually means that if I don’t rest, take it easy, and take something to calm my mind, a few other seizures are lurking in the corridor.
The Choices I Make & The Things I Control
I can choose what to do when I face an attack, but I have no control over the fact that I have an invisible chronic illness or when a severe attack will occur.
For me, everything has a trigger, but as much as I would like to know and understand all my triggers. I don’t.
So most times, when the attacks happen, whether its a seizure, a flare up or whatever else, my choice is to deal with them in the moment they happen as best as I can. Then I think over the situation I was in when the attack happened and I log that as a possible trigger. With that information, I become vigilant and careful not to have another attack when those similar conditions arise.
This much I can control, but whether I have an invisible illness that causes seizures and a host of other painful symptoms is not something I can control.
Realizations That Matter
I have come to realize that as much as I want my illness to matter to people, and for them to understand it, it doesn’t. What matters is that I understand my illness and accept it as it is. I do not need to prove to anyone that I have an illness even if doctors can’t figure it out (at the moment), and I keep getting rushed to the hospital with various illnesses so often.
Accepting my illness is a gift on it’s own, and once I learned to accept it, I realized that whether people acknowledge it’s existence or not, doesn’t really matter. What matters is the reality I face when an attack happens and I have observed enough to know what to do about it.
What matters the most is that I know I have an invisible illness, the people that matter know that I have an invisible illness and when push comes to shove, my body knows that I will do what I can to help it re-establish an equilibrium when an attack occurs.
