I was at a family event this past weekend while I was having steroid withdrawal. There’s nothing quite like looking dazed and then falling asleep on the floor in front of relatives you haven’t seen in a year — and their new partners! On one hand, it was embarrassing, but on the other, it showed family members who aren’t familiar with my treatment regime what I go through every six weeks. Many were concerned and shocked, even when my parents reassured them that I would be fine in a few days and that this happens every time. The experience reminded me that most people are not familiar with my “normal,” partly because it’s unusual, and partly because I generally spend time alone when I’m going through steroid withdrawal, so others don’t see it.
It was interesting hearing some of the questions from my relatives about my health. One asked me if I felt fearful of steroid withdrawal, because it looked awful. I told her that I don’t feel afraid of the withdrawal I get after Remicade/steroids, but that I do feel resigned to it. It’s not scary because I’ve been through it so many times before: I know when it will happen, what my limitations are, how it will progress, and when it will end, so I can plan my life around it. I don’t enjoy it but I can cope with it.
The same relative asked if I feel extra-good or extra-energetic after the steroid withdrawal wears off. The answer is no — I just feel normal, as in healthy-normal, unless I’m sick with a cold, of course. She seemed to think that it would make the most sense for me to have extra energy after so clearly having no energy for a few days. Unfortunately, it doesn’t work like that. (I wish it did!)
All of this got me thinking about what I take for granted about how treatment affects me, now that I’ve been on biologics + steroid pre-meds for 11 years. I think the cycle seems normal to me, whereas it is very strange to people who haven’t gone through it themselves or seen others go through it at close quarters. I also think I assume that people know what I’m going through even when I mention it only in passing, like when I say “I’ve got treatment next week,” whereas they really don’t have a clue. I guess I’m better at hiding the unpleasant aspects of my life from others than I assume that I am.