I loath to think about the drain and drudgery of living with a chronic condition. I spend a lot of time blocking it out and I prefer, for the purposes of improved mental health, to focus on what is good in my life, despite my disease.
Yet, there are times when the drain and drudgery of living with a chronic condition are very much a reality in my life. It can be incredibly brutal to live in a broken body but it’s a quiet brutality, a nearly invisible one to the untrained, uninformed eye. This is, in part, because I’ve perfected the art of concealment. I conceal it because I don’t want pity. I conceal it because I have learned that most people don’t really care anyway. My disease makes people uncomfortable which makes me uncomfortable so, better to fain wellness than show weakness.
This though, is just one part of the drain of living with a chronic condition, the hiding. There are several. Living in a chronic body is unpredictable. You are strong one moment but the next, all energy and function is zapped from your body, without warning and for no discernible reason. It can be maddening. It can also be depressing.
And then, there is the endless advice, often accompanied by judgement, from those who do not suffer, about what you should be doing to “get well”. I say there is judgement because when you don’t look sick, whatever that means, people don’t always believe that you are and you can always tell when you are being judged. It’s in the looks that you get or the tone that is used by those who simply cannot know that your inside does not match your outside.
Sometimes, this annoys me. After all, why should I have to look sick just to prove that I am. Am I supposed to wear dirty sweatpants around the house with unwashed hair and no make up? Why? It shouldn’t be that hard to understand that trying to look my best is part of trying to feel better. Yet, I am judged by some for not looking sick…draining!
So, I don’t feel well much of the time, I am judged for it because people don’t understand why I don’t look like their definition of sick and I am in some level of pain all the time…drudgery.
Even the treatment for my disease actually makes me feel sick. And, it’s not a cure. The only thing it does is treat symptoms to slow the progression of the disease. The idea that I will be on drugs that are poison for the rest of my life is deflating. In fairness even though I have been on these drugs for several year, I may not need them all the time, but with each flare I know what I have to look forward to…more drudgery.
The drain and drudgery, the fatigue, the pain, the uncertainties are all realities of my life. I must accept them as such and cope with them in the best ways that I can. One of those ways is by acknowledging them for what they are and not being afraid of them. They will be stronger some times than others. I will have draining moments but they will pass.
The drain and the drudgery that comes with my disease, don’t define my life or dictate how I live but I can’t ignore them either because that only makes them bigger. Instead, I must deal with them so that they do not forever cloud the blessings, joys and mercies that very much present in my life. I do know that despite the hardships of my disease, life is really pretty great.