To Be, Or Not To Be...Sick.
Recently, I had to make a decision I never wanted to have to make: leave an event that was all about my kids, or stay and possibly create a scene and humiliate them due to my disease. The event: My son’s twentieth birthday dinner. The problem? I was suddenly overcome with weakness and that eerie feeling that I was about to faint. I left just as our meals were being served and spent the remainder of the dinner in the car reclining. My son understood even though I still think I ruined his birthday dinner.
The reason for this letter however is what happened while I was resting in the car. As a few people passed by the car, I overheard one of the girls say, “look in there, she must be passed out drunk and they just left her there!” while the others laughed. Really? No thoughts of ‘is that person OK?’, ‘do they need medical attention?’, or even ‘could they be dead?’? No compassion or empathy. Just ridicule and keep moving as so much of our society seems to be now. The comments took me back to other statements overheard at work, at home, even by my own mother about how to manage my disease. A disease they will never truly understand. So here is some education.
I am chronically ill. I have an autoimmune disease, three in fact; Sjogren’s, Fibromyalgia, and MCTD. Autoimmune diseases are diseases in which a person’s own immune system attacks specific parts of that person’s body (not to be confused with AIDS in which a virus attacks the immune system itself). Examples are Rheumatoid Arthritis which attacks the connective tissue, Sjogren’s which attacks moisture producing centers, and Lupus which attacks pretty much anything. There are hundreds of autoimmune diseases diagnosed by various tests and differentiated by what they attack and most have no cure.
Since all this attacking is going on inside our bodies, we don’t look sick. The more severe cases of RA do produce noticeable deformities on the joints, but unless we tell you we are sick, you generally won’t know. And we do hide it. We hide it so we can work. We hide it so we don’t seem whiny. And we hide because you don’t understand, you can’t understand, what it’s like day in and day out.
So let me tell you: these diseases are like little monsters that have invaded our bodies and which we cannot control. There is pain. That is the obvious part. The part people understand. Wherever we are being attacked by the disease, we swell up. And swelling causes pain. For me, it’s in my joints, my head, and my eyes. But swelling also causes fatigue. That is a hallmark of autoimmune diseases that most people do not understand and most of us have problems explaining. We are not just tired like we stayed up all night and need extra sleep. We are tired beyond the ability to move. Where raising an arm seems impossible. I have had to crawl up the stairs to get myself food and water due to this fatigue. It’s why we may seem so spaced out or uninterested when we are out to lunch with you. We literally lack the energy to concentrate that day. And if that’s the case, know how special you are to us that we used all our reserves just to be able to be there.
Our diseases also cause mobility issues, balance issues (I call it meeting the wall), dexterity issues, dizziness, tremors, and the ability to get sick at the drop of a hat. Do not look at me cross-eyed, I may get yellow fever. My immune system doesn’t work right, remember? And for me, I get dehydrated easily and lose my blood pressure. Hence the need to run from my son’s dinner. The point? Hundreds of diseases, thousands of possible symptoms or combinations of symptoms all waiting to break free. Can I get a “woot-woot!”?
Remember also that most of us take medication-maybe more than one-to suppress our immune system in an effort to keep it from flaring up and wreaking havoc. None are 100% though and all have side effects. Side effects that are sometimes worse than the disease itself. And meds can stop being effective. So many of us are on a roller coaster of finding the right med, the right combo, weaning on, weaning off, or waiting out side effects to see if they go away. There are meds for pain, meds for muscle spasms, meds for depression, meds for migraines, meds for energy, meds for sleep... So many medications and yet no cures. And not all meds are approved for each disease so our insurance won’t necessarily pay for our medicine, even if it’s the one that works. Just for an added stressor.
So a piece of advice? Please understand that we are fully aware of our bodies and how they work. Telling us that we should not have done A or should have done B while we are experiencing a bad flare up is not helpful. The truth is that there is every likelihood we would be in just as much pain had we done nothing but sit and watch movies. We live with the reality that on any given day we will wake up in a full blown attack no matter what we do to prevent it. All we can do is treat the symptoms as they happen at that point.
Please understand that our diseases are constantly evolving and our symptoms can and will change and probably worsen over time. New symptoms will develop. We are not making it up even if you have not heard us discuss a particular problem before. These diseases are degenerative. No one knows how each individual’s disease will progress, but they do. And when they do, understand we feel like we are losing another piece of ourselves to this insatiable little monster. We may need to rant, rave and cry. Again. We even second guess ourselves. Mostly, we have learned to accept our diagnosis. Our goal is simply to live our lives without the monster taking control and interfering. But it happens. It will always happen. And when it does, if you know what we are dealing with, support us by telling us it’s ok or asking if we need anything. Just don’t tell what we should have done differently or how we might have caused this in the first place.