I just wanted to write about how happy I am at my mum’s progress with my disease and disability. It also happens to be Mother’s Day here in the UK, so it’s a perfect fit!
I don’t want to dwell on the negatives of the past, but like anyone whose family member has an incurable debilitating disease, my family has struggled with both the implications of my physical and mental illnesses. My mum hasn’t really been insidious about my physical struggles as such, but just misunderstanding, especially throughout the years without a diagnosis. More recently, the issue has been not taking lupus as seriously as it is, and so I’ve taken it upon myself to be more open about things with my family in a way that doesn’t feel like complaining to me.
This year I’ve been using my sticks virtually every time I’ve been out of the house (which hasn’t been often!), whereas before I did have more days where I’d manage without them. I find myself less conscious of them now and more able to say to my family that I can’t manage something. Before Mum would usually say “Why?”, “Why not?”, “But you managed before/yesterday etc.”, and now she will often just say “O.k.”, and acknowledge that I really can’t manage things a lot of the time. Although I will get the bus to and from town when I manage to go, often she will happily drop me off and pick me up, as she did for my work adviser interview, even though she had to come back only 20 minutes later! (The letter said it could last up to an hour, so we decided she shouldn’t wait!) She often runs errands for me or with me, making my doctor’s appointments if she’s there, picking up prescriptions, taking me to the library when I need to return books. I have guilt over this as well as a feeling of lack of independence, still relying on my mum at 23 years old and having managed to get around more while I was at uni, when I didn’t use sticks or anything.
I feel I can talk more about my conditions and how they affect me. I find it hard to talk about my mental illness and self-harming in detail with her, but I can talk more vaguely about my depression and that’s a relief to be able to do it. She would run me to my psychologist and pick me up, and she would ask me each time how I got on without pushing for details I didn’t want to give, and I began to be able to talk at least in vague terms of how the therapist was helping me. I told her about my worries about having high-functioning autism, and that the therapist agreed it was likely, and we spoke about many of my idiosyncrasies from youth in particular which would make sense with the diagnosis.
Last week when she picked me up from the adviser appointment, we did some errands. She makes sure I manage in the supermarkets, letting me push the trolley for support even before her hip replacement when she used it for support too. I can’t remember how the conversation came about, but I mentioned at some point that I saw an infographic that said the average age of death in lupus was 26; I didn’t do it to scare her, and assured her that the average was partly a result of those deaths before effective medication was found, and that with a diagnosis so young, treatment, and seeing a rheumatologist regularly, it is perfectly possible for me to have a normal lifespan, but it was the reminder that this disease can and often is fatal. I found I could openly mention that I am at the start of kidney damage and that kidney transplants are common in lupus patients – we often talk about how sister is all set to give me a kidney in the future, but I think Mum thinks it’s very hyperbolic – and that although this might be in my future, I can’t dwell so much on each prognosis like that, having various organ involvements already. We talked again about what causes it, and I think she has a lot of guilt because I inherited hypermobility from her which gives me a lot of issues, but also because the entire family was sick with the flu that triggered my lupus; everyone else recovered just fine.
Being a twin means that my sister and I were often seen as one package growing up, and more and more, even so late as 23, I see our family separating us. We are similar in many ways, and very close, but really so different too, as any two people, no matter how similar, will be. This issue of separation made it somewhat more awkward to deal with my illnesses in the first place, I think, for the rest of my family, and for a while I was guilted by them that my twin was taking so much on herself – although I wasn’t able to, we had all become so accustomed to my sister and I doing the same things, the same level of chores and errands, etc. People would often label us both with something that only applies to one of us, even on a basic level as getting my sister to fix computer-related issues even though she relies on me for that. On another level, even family members would not explicitly know what degrees we studied for even though they were so different. “Which one of you does the languages?” wasn’t a rare question! So although much of this is a twin issue, it made things difficult for me when I became disabled; however, I am thankful to my illness that they helped create this distinction even more between us.
Basically, Mum is just becoming a lot more aware of the issues around my disability in general (she herself was legally disabled with her hip arthritis, and now although she has it replaced, she has arthritis in other joints) and my conditions in particular. She used to say things like that my twin and I are lazy for not getting something done, and often my sister would get so angry and say “Call me lazy if you want, but never call him lazy for not being able to help”. My family know that I never take advantage and say I can’t manage something if I could! They also acknowledge more now that sometimes I can manage something, but have to plan carefully around scheduled events to conserve my energy.
I went through a long period of not wanting to worry my family, and I think that contributed a lot to them not realizing the extent of my disease and the probable progression. I would very much resent them going on and on about the little parts of their health issues while not acknowledging the extent of mine, but I know now that in part that was because I would keep quiet. (Don’t get me wrong, a lot of it they just conveniently ignored!) Becoming more open about it does mean that my family share more worries, but it means they are more informed. As I said about myself, I found it much easier to cope when I fully acknowledged that this disease was forever and will likely progress, which might seem paradoxical, and I think it’s the same for my family. They take me more seriously the less they harbor the unlikely wish that I’m going to just suddenly get better one day. It’ll be easier for them in the event that I do need a kidney transplant that I don’t just walk in and land that bomb on them, but if they’ve known in the run-up to it that I already do have kidney damage, and if I let them know if it progresses.
I know it hasn’t been easy for my family, so I am grateful to them for the progress they are making, Mum in particular. My twin has been an absolute rock from the start. We were 15 and I became suddenly ill with no answers. We were both bullied at school, and apart from that a 15 year old has enough to deal with never mind all this on top of that for her; the worry, having to do so much for me, having to face the bullies on her own, not knowing whether I was severely ill, at risk of dying even. At this point, I slept over 18 hours a day and she would often have to feed me. I also had a severe mental health crash at 16 and she had to deal with a lot of it that my parents just didn’t realize. Even she has progress to make in some parts, which I help by letting her know kindly if she’s said something off; for example, at some point she alluded to “spoons” (Spoon Theory) and I let her know that it’s very dismissive and insulting to have non-disabled people appropriate this concept. A lot of things that non-disabled people say are not vindictive, so it can be hard to say to someone that they are insulting you when they are trying to empathize with you. If you mention an issue and someone says “Oh yeah, I get tired/sad/a sore back etc. too!”, it can be hard not to seem like an asshole by telling them that’s pretty dismissive. So I try to tell her more casually, and she amazingly takes it on board well. She still has days where she resents me not being able to do something, or acts like maybe I’m not as unable to do something on a certain day as I make out, but she does apologize. Disability impacts your family as well as you yourself, and it is a journey for all of us to make, and all of us to contribute to. And I’m happy with how my loved ones are making an effort.