I’ve realised over the years that alongside the physical issues chronic illness causes, there is a whole raft of personal and social issues that can add to the stress pile. I often worry that people will think I am making a fuss if I ask for help/explain why I am not doing something/require special treatment. Anything that draws attention to my ‘difference’ in social situations, I find excruciating.
Now I come to write it down, this example seems so silly. But I’ll share it anyway. Last night, I had just arrived at our weekly church small group (a great bunch of people). As usual, various chairs had been arranged to supplement the sofas, which were full. I was eyeing up which chair would work the best, and with some internal panic, settled on a folding chair that had been gaffa-taped together. I have nothing against slightly creaky old chairs, but after a hour or so, they can make my joints quite stiff and uncomfortable – I think because they have higher seats and less room to wriggle and reposition.
Usually, someone in the room would naturally offer me a sofa seat. But they didn’t this time, probably because I have been much better recently, and look absolutely fine to sit on any old thing. I’m not blaming anyone for not offering up their seat – I totally get it, it wouldn’t occur to me either if I wasn’t living in my creaky body.
Anyway, back to the scene: My friend offered me a cushion, which I gratefully accepted. At this point I stood up to get my bag, and another friend quietly stood up and moved to a folding chair. “Phew, it’s sorted itself out,” I thought, anxiety over! But I had missed our heavily pregnant friend coming into the room – the seat was meant for her, and I had just nicked it. I was so embarrassed. Ugh, I felt sick. everyone had a laugh, but my heart was pounding. I had been so reluctant to ask, and now I just looked like I thought I was the Queen! Or worse; even the Queen would probably stand for a pregnant woman.
In reality, everyone else probably just found it funny and forgot about it. But for me it was the embodiment of some of the social worries that can accompany life with chronic illness. Really all I want is to look and feel normal. And the reality that I am not becomes more stark when people have to change their routines and comfort for you. These anxieties are the reason I have stood in toilet cubicles to check my blood sugar and stuff jelly babies into my mouth, and the reason I have just not eaten anything at parties, rather than ask about the wheat content of the buffet.
Last year I left a friend’s birthday cocktails at a bar in London because I had a hypo, and it just made me feel so incredibly vulnerable. I didn’t want to be the needy one, the one everyone was watching out of the corner of their eye. And sometimes, it’s not about other people. I just want to forget those little niggles that remind me that things will never be as simple as they once were.
I guess this post is a moan to myself really. I know my friends love me and want to help me. I had got much better at expressing what my needs are and being honest when people ask, “How are you?” But I think my RA settling down has meant I feel I don’t have licence to vocalise some of these things anymore. And that’s just not true. I’m certain I judge myself harsher than anyone else would.
And even if people think I am making a fuss, who cares?!