I have become a professional sick person. That is, I do not have a regular job. My life revolves around chronic migraine. Each day, I decide what I can do based on my chronic migraine. And, I have an entire daily routine based on my illness. If I'm feeling well, I spend my morning supporting my wellness by performing certain tasks, including taking medications, meditating, and exercising. If I'm having a bad headache day, I have other "headache" tasks to perform, including taking medication and reorganizing my day.
In sociology, there is something called the "sick role". When someone gets sick, they have two rights and two responsibilities. The rights are that they are not responsible for their condition and that they are exempt for normal social roles while they are ill. The responsiblities are that they should try to get well and that they should seek out competent medical professionals and follow their advice to get well. (Note: This is from the work of Talcott Parsons.)
This model works really well for acute illness but not so well for chronic illness. For example, we are exempt from the activities from daily life for only so long. Once an illness becomes chronic, we have to try to find a way to access as many parts of normal life as possible. Also, while we should still try to get well, chronic illness differs from acute illness in the we are often no longer searching for a cure, but a way to manage the illness. Yes, our responsibility is to try to get well, but "well" in the context of chronic illness is not a cure, but a tolerable way of life.
How are we supposed to be a "good" sick person these days? I would argue that those of us with chronic illness have the right to remove ourselves from the activities of daily life that exacerbate our illness. In my case, I've had to leave work because activity makes my migraines worse. When I have a migraine headache, I need rest and I can't practice medicine when I'm having 3+ migraines per week. My brother has chronic back pain. He no longer does his yard work. Since he has two sons, he has transferred the work off to them. We have the responsibility to seek appropriate treatment to make our lives manageable. In my case, it is seeing a headache specialist who helps me to keep my chronic migraine at a tolerable level. I'm not chasing a cure, but I'm working on keeping life livable. But, I don't run down every possible migraine treatment. Many don't make sense scientifically and I don't feel bad about not trying them. Others are expensive and difficult to access. But, I'm working plenty hard at managing my chronic migraine to be active in society and to maybe one day be able to work again.
My brother has chronic back pain after a couple of back surgeries. He's able to continue to work, but his leisure time activities have been significantly curtailed. I have chronic migraine which required that I quit my job. And, I do few truly fun things outside the house. So, we're both a mess.
How do we handle our illnesses? I think we do reasonably well. My brother is able to go to work and have a life. His back pain definitely affects his life. But, he's managing. He sees his pain specialist and does all the things he's supposed to in trying to reduce his pain. But, when we talk, he tells me about his back pain. And, that's fine. Pain is overwhelming.
My situation is a bit different. I had to quit work because I couldn't work through the migraines. In addition, my medications are affecting my cognition. But, my chronic migraine has taken overy my life. And, I talk a lot about it because it is my life. My diet is now a ketogenic diet because of chronic migraine. When I talk about recipes, I talk about making things with few carbohydrates. My plans are always tentative because I don't know how I will feel, so chronic migraine always interferes. I only make it to church once or twice a month because of chronic migraine. My exercise is walking, and I can only do it a couple of times a week. I won't be running marathons anytime soon because of chronic migraine
How should those of us with chronic illness present to the rest of the world? In Little Women, Beth is the most sweet and patient person, even after she becomes ill. She has always been the portrait of how I thought sick people should act. She was always thinking about others even when she was ill and close to dying. Sadly, I don't measure up to that level of perfection. Nor do any of us.
There's also a picture in a strain of Christianity of suffering in which we "suffer for Jesus". John Piper wrote a short book called Don't Waste Your Cancer in which he exhorts those with illness, specifically cancer, to look beyond their illness to how their reaction to illness displays the love of Jesus to others.
I'm not very fond of the idea of "not wasting our illness". Yes, our illness can be used to bring others the good news of Jesus. But, our illness is first and foremost, our illness. We react in whatever way we need to react. In my case, I spent a lot of time in the books of Job and Lamentations just lamenting my circumstances. Then it was on to the letters of Paul as well as the Gospels to learn some contentment. We are allowed to have our feelings about our illness. We are allowed to take care of ourselved first. I am not "wasting my illness" by living my life in a God-honoring way that focuses on my health first.
But, now, how am I handling my illness? I'm certainly not like Beth in Little Women, the paragon of virtue who handled her illness and impending death with such grace. But, I have gotten past the anger stage. And I don't try to hide my illness. My life has become structured around it and that's fine. I certainly don't mind when other people comment on the difficult parts of their life. I hope we can support and pray for each other through these challenging times.
Am I a good sick person? I guess it depends on how you feel about hearing about my chronic migraine disease. I don't write about it for sympathy, but because it's so much a part of my life, and also to be an encouragement to others with chronic illness. Sure, sometimes I get angry or despair, but that's just keeping it real. And when others write about their own health issues, I'm happy to support, encourage, and pray for them. That's what we do.
How do you manage your chronic illess or react to others with chronic illness?