So, today, May 10th, is World Lupus Day, and I thought I should contribute something, although whether it will be beneficial in raising awareness into this disease remains to be seen! I basically want to talk a little about the disease itself, and also then about how it affects my everyday life.
Lupus is an autoimmune disease, meaning that the immune system recognizes the body’s own cells as “foreign” and attacks them as it would germs. In a way it’s like being allergic to one’s self. There are actually a few types of lupus; this post will be on systemic lupus erythematosus, or SLE as that’s what I suffer from. In this condition, there is no limit on which cells can be misrecognized and damaged–as the name suggests, it is a systemic, i.e. whole body, condition. What this means is that the course of the disease can be completely different in two patients, not only in severity, but in which tissues and organs become damaged. This combined with the fact that symptoms are so generalized through the whole body make it a difficult disease to diagnosis; it is often called “the great imitator”, and many people take around 5-15 years to get diagnosed. It took six or seven years for me.
The effect caused by lupus is mainly inflammation, but this can progress to the point where tissues and organs become quite severely damaged, in some cases leading to organ failure, usually in the kidneys, but as I mentioned, it can be anything. I personally have some damage mainly to the heart, bones, kidneys, and intestines, but also issues with my skin, liver, brain… Luckily for me, most organ damage is at the early stages; no failures for me yet! But also the bones, muscles, and soft tissues are affected. Honestly, pretty much everything. I would find it very hard to point out a part of my body that hasn’t been affected even a little by lupus.
The hardest part of the disease in my experience is its unpredictability; not only in severity and differences between patients, but in an individual’s experience. Many people experiences flares, where symptoms get dramatically worse, and remissions, where they become dampened and even almost disappear for some lucky ones! I am in a flare at the moment, which can last from days to weeks to many months. Unfortunately, I don’t experience remissions as such; things are always quite bad for me, just worse in a flare which will usually keep me completely housebound.
Even day-to-day variation can be quite dramatic; when I was still undiagnosed, family and friends would say, “But you were fine yesterday!” In fact, a very common vicious circle can occur in which we have a good day to the extent where we overdo it, and then we have a long period of “payback”, which can be the next day, or in my case, more often a few days or even a week. My doctors have long told me off for overdoing things on a good day, but I tell you, when good days are rare, it’s very difficult not to take full advantage, even knowing I’ll pay for it tomorrow and so on!
Unfortunately this makes it difficult for me to easily live on a regular schedule, partly because as I said, I don’t know how I’ll be day-to-day, but also building any kind of stamina becomes difficult. For “normal” people, they know the tough days just need to be toughed out, and it should go uphill for them as time goes on, but with lupus, overdoing a day can mean a break for so long that you lose what you’ve gained. Also for me, the pain in my joints etc. is not just because I’m unfit, so it won’t necessarily improve with fitness, and in many cases, by pushing ourselves to build fitness, we can do even more damage to our bodies that gets worse, not better, with time. So the balance is extremely hard to find, and after eight years or so, I haven’t found it yet! I don’t know if I ever will.
Another issue with lupus is that it’s largely invisible. People look at you and can’t imagine that every bodily system is under attack. You just have to look at my symptoms list on this blog to see how it starts seeming very much like no one can have so much going on in so many body parts. This long list of symptoms is what makes it hard to diagnose; not only because it’s very generalized, but because doctors can view you as quite a hypochondriac if you say everything is hurting and nothing comes up on tests! It also affects the way people can treat you; even if they know about the disease and what it does, it’s easy for family and friends to forget just what you fight against every day. They forget that just because you aren’t talking about pain and symptoms, that doesn’t mean they aren’t there. This invisibility can also mean bad treatment from strangers who simply don’t believe you’re disabled, or “that” sick. I’m thankful in a way that I use sticks as a sign of my disability, but even then people don’t realize everything that’s going on behind the scenes.
If you’ve come here to learn about lupus for World Lupus Day, thank you for your interest! If you know someone with the disease, be there for them; remember that just because they aren’t showing or talking about their symptoms, there is always something going on with this disease. When you have such a systemic, chronic illness, it becomes natural to act “normal” even with quite bad symptoms. With my heart issues, I often get quite sudden chest pain and fluttering, but often those around me have no idea because I’ve learned simply not to give any outward signs. This is a combination for me of simply time that has passed, of not wanting people to treat me as though I’ll break (which they would, I’m sure, if I made clear everything that goes on), of not wanting to seem like I’m complaining all the time, or, God forbid, bragging. We will often push ourselves through things and suffer for it, even if we seem o.k.
So my final point is don’t take the unpredictability out on us sufferers, least of all because it’s worse for us than for you to have to cancel plans at the last minute sometimes. We have had to grieve for the lives we used to have and even after many years there are still days where you think, “Why me?”, “Why can’t I be healthy?”, “Why can’t I have a normal life?” I get down some days when it hits me that I simply won’t get a break from this. My sister said to me recently that she felt awful for me because, for “normal” people, the thing that gets them through illness is the thought of getting well again; of course, with lupus, most people get worse over time. I’m only 23, and already most systems are affected; a kidney transplant is very possible for my future, cancer risk is increased in general, and death is a very real possibility for lupus sufferers. But I can’t dwell on that, and you shouldn’t either–provide a space where people can talk about the disease and its symptoms without that black cloud, of being able to talk very matter-of-fact without you drowning them in pity. This is why I try to talk about things more openly, because I don’t think it should be a separate dark discussion but an everyday thing for me to be able to mention something about lupus. Many people say we are not defined by our disease–I think I am, and that’s o.k. What we need is for others not to treat us as the disease–bear in mind that almost every choice we make has to be based on it, but don’t treat me as “that friend with lupus”, or, as someone said once, “that guy who’s always sick”. We have normal likes and dislikes, we can have “normal conversations”. Friends and family also have to find that difficult balance of acknowledging lupus and not overdoing it, having too much pity, or treating us as fragile objects who might break at any time. This blog is part of my effort to work together with those who suffer from lupus and those who don’t, opening a dialogue where nothing is “TMI” and we can learn from each other.
Thank you for your time! (Especially as I went OTT as usual; being concise is not a concept I’m familiar with. :P)