The Non-Physical Toll of Invisible Illness

One of the issues relating to this illness that has been, and continues to be, among the hardest to deal with is the feeling of isolation that comes with it. I can get angry when doctors don't listen or try to understand, but I'm much more likely to feel both angry and hurt when family and friends are dismissive.

If I try to describe what I'm going through in a matter-of-fact way, people simply don't understand. Pain? Oh, that must mean the aches and pains they've started getting now that they're a little older. Fatigue? Well, everyone gets tired; exhausted, sometimes.

Trying to make someone understand what I'm going through is almost sure to backfire. I'm still, in his or her mind, that person with common uncomfortable ailments, but now I'm also an attention-seeking whiner. This misunderstanding isn't entirely the listener's fault; people generally have to have some kind of frame of reference for something in order to understand it. A person's understanding of muscle pain and exhaustion is limited to the pain and exhaustion he or she has experienced. What most people forget to consider, however, is that people with autoimmune or neurological disorders have likely experienced the pains and the exhaustion that are sometimes part of daily living as well - so they have a very good frame of reference for what is normal and what is not.

The truth is, I'm neither a person with the typical aches and pains of aging nor someone looking for pity. I'm merely attempting to explain what is happening to me and defend myself against the uncharitable judgments others might make when I cannot do the things a person who is as healthy as I look to be can do. I want people to understand that when I cut back on my hours at work, it isn't because I'm not a hard worker. I want them to know that when I can't go shopping with them, it isn't because I don't care about spending time with them. I want them to know that if I overexert myself for a short time, I will be largely incapacitated for a long time.

Most people can work for eight hours and come home tired but functional. I can work for four hours, and I struggle to climb the stairs to my door. There have been a couple of times, when no one was around to see, that I allowed myself to crawl up the steps instead of walk. My staircase only has 13 steps.

My collection of symptoms isn't something I can push through, and that's not because I'm weak or lazy or undisciplined. I have an extremely high tolerance for pain and for most of my life was incredibly strong. I have pushed for years, probably longer and harder than most people could. I am no longer stronger than the force that is pushing against me, and all the effort and patience in the world are not going to change that. And though I can no longer push through this, I still push back with everything I have.

Once, after going through a round of blood tests, I said to a friend that I would rather have one particular condition more than another condition, since the latter condition was known to be disfiguring. My friend then proceeded to berate me for "wanting" to have the former condition. I didn't want to be exhausted and in pain, and I didn't want to be confused. I was those things, however, and figured I'd just as soon not look bent and broken on top of it all. The unspoken implication from my friend, however, was that I was seeking attention.

No one should have to deal with that kind of insulting implication from loved ones; unfortunately, most people with invisible illnesses do. (And for the record, I do sometimes seek attention. When I'm up to it, I do this by socializing and submitting my writing to literary journals. At one time, I engaged in both of these activities regularly and was also heavily involved in community theatre. There is no way I would have ever willingly traded a life that allowed me to participate in activities I loved for one that didn't.)

I've had family members tell me that what I feel "isn't that bad." How am I supposed to respond to that? What I feel in every moment is very much that bad and worse; if that isn't evident, it's because I'm exercising a great deal of the discipline people are far too likely to assume I don't have.

I don't feel bad because I am stressed, though I am sometimes stressed because I feel bad. I can be passionate and quick to react emotionally to things, true enough - but stress usually manifests itself physically when people are unable to express their emotions otherwise, not when they are more than adept at doing so. Beyond this, common sense alone should make short shrift of the stress theory. Every stressful element in my life absolutely pales in comparison to stressful elements in my past. Traffic stinks? Check! It's really bad when you don't have a car and must weave your way through traffic while carrying your laundry baskets. Money is tight? Check! Former single mom - need I say more? So I get a little peeved when I hear people suggest that I sometimes list into walls because I'm stressed.

Similarly, depression is also out as the cause of this disorder. I'm happier than I have been in years. It's true, though, that my quality of life has been drastically slashed, and I do find that depressing. I often feel guilty for not doing more at both the office and at home, and for the unfair burdens my inability to do more has placed on those I love; this guilt does sometimes lead to bouts of depression. I've generally become depressed each time I've seen yet another doctor who has been lazy, disinterested, condescending, or some combination of these. But my depression in all of these instances is situational and reactive, not causative. And so far, I've been able to compartmentalize it fairly well. That is, I still find great joy in my family and home, and I'm still capable of gratitude for the many blessings in my life. My family and I laugh together hundreds of times daily. Whatever is responsible for this illness, it isn't depression.

As I said earlier, explaining this ordeal almost always backfires. So why do I try again now? Because if I don't do what I can to educate, I don't have much room for complaining if misunderstandings persist. Just as I've had to become an advocate for my health, I now have to become an advocate for a greater understanding of the effects of invisible illness.