Welcome to my normal

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.

This entry was posted in coping skills, difficulty concentrating, disability, fatigue, hidden disability, organization, planning ahead, relationships, relationships with family, side effects, steroids, symptoms, withdrawal. Bookmark the permalink.

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