Guilt is probably one of the most common emotions felt by an individual with chronic illness. At least it is for me, I can’t speak for others. Not because we necessarily feel guilty about ourselves, but often times we are made to feel that way by those we encounter, although it is usually not intentional on the part of those individuals.
Why should I feel guilty about something I can’t control? That’s what part of my mind says. But the part that actually controls my feelings completely overrides that. This is in part due to experiences I’ve had that have made me feel guilty, whether the feelings were actually warranted or not.
When you have a chronic illness, your life changes. You can’t do what you used to be able to do in some cases. In my case, being able to work through my symptoms became a near impossibility fairly quickly.
At my place of employment, I always feel guilty when I have to call off for any reason. We have a “no fault” call off policy, which is badly named since you get attendance points against you for calling off, but basically it means you can’t be interrogated as to why you called off. There are many employees in my department; over 100 pharmacists and probably twice as many technicians. As a result, there are going to be people who abuse the call off policy and just call off when they don’t feel like coming to work. Luckily, that’s never been a problem with anyone in my specific area of pediatrics; we are a small satellite with about a dozen pharmacists and two dozen technicians, all of whom are devoted to our work as a speciality area. But that’s never, in six years, made me feel like I’m not being judged for calling off, even though I’ve never called off just for the sake of calling off. Luckily, my call offs back then were few and far between; they were always just a few times a year for migraines.
Until 2016. That’s when everything changed. As related in my posts Zero to Migraine and Hell in my Head, I started having migraines at a freakishly frequent interval, multiple times per week, for almost 3 months. I was initially diagnosed with status migrainosus by a neurologist. But the migraine treatments I was prescribed did nothing to relieve my symptoms. It was thanks to my astute reproductive endocrinologist that I was finally diagnosed with a benign brain tumor called a prolactinoma in March. I was put on medication to shrink the tumor, but the medication made me so sick I couldn’t tolerate it. So now I am counting down the days until I have brain surgery to remove the tumor in three weeks.
As you might imagine, I missed a lot of work due to my migraines and the side effects from both the medications to fight the tumor and the tumor itself. I called off for a ridiculous number of shifts and spent many weeks here and there on brief leaves of absence in the hope that the rest would help, which it never really did. I have been on disability from work since June and won’t be going back until the end of October, six weeks after my brain surgery. I’ve been wracked with guilt since it all began.
January 22, 2016: “I just feel so terrible about calling off. I’m really letting my coworkers down, but I don’t know what else I can do…Every day I call off I feel even more depressed because I’m letting my coworkers down.”
January 26, 2016: “My coworkers must hate me for everything I’ve been putting them through. I would love to just quit, so they don’t have to deal with me anymore.”
February 3, 2016: “As far as emotions go, I’m in a bad place right now. I just turn into a train wreck every time I call off because I feel like I’m letting everyone down. That they hate me for making them work extra or work short.”
Then there was the day in April that, due a technological fluke, I overheard my coworkers talking about my absences in a way that upset me tremendously. Let me be clear and say I don’t blame them at all. What they were saying was actually true, as painful as it was for me to hear it. But it really pushed me over the edge in terms of how I perceived my ability to work and my worth as a pharmacist at this healthcare system. I haven’t really been the same since.
I know my coworkers have never intentionally made me feel guilty. (Well, maybe a few times, but that’s another story.) It’s mostly a burden I’ve placed on myself due to my own insecurities, and it’s a burden I don’t think will ever go away. Going back to work is going to be a challenge, I know that much. Especially if I ever find myself in a position of needing to call off again, for any reason.
But then individuals with chronic illness are often made to feel guilty for other reasons, too. One thing a lot of people have difficulty comprehending about chronic illness is that it is, in fact, chronic. Which means it isn’t going to go away. We’re not going to “get well soon.” When we hear such questions as “Aren’t you better yet?”, it makes us feel guilty for not being better, even though there’s not necessarily anything we can do about getting better. I’ve done all I can for myself. I have celiac disease, so I’m on a gluten free diet, but I will always have celiac disease. I have endometriosis, so I’ve had excision surgery by one of the best excisionists in the world, which is the gold standard of therapy for the disease. But there is no cure; there’s always a chance it could come back. I have adenomyosis, which can only be cured by a hysterectomy, which I will have once I’m done having children, if I’m ever able to have children. But I have to deal with the daily pain until then. And I have a brain tumor, for which surgery is only 70% curative, so it could grow back. So when I hear questions like “Why aren’t you better yet?”, it makes me feel like I’m doing something wrong and that I should be ashamed of myself for still being sick.
If you know anyone with a chronic illness, take a moment to try and understand what it’s really like to be in their shoes. Talk to them about it. And understand that chronic illnesses don’t go away. We’re in this fight for life. And it’s helpful to have understanding people by our sides. Will you be that understanding person today?