I was sitting on the bus the other day, and as we got close to my stop I put on my gloves, ready for the change in temperature when I got off the bus. A woman sitting near me started laughing and asked incredulously “Are you actually cold?!” No, I was not cold. I was overheating, in fact, but unfortunately Raynaud’s can still react to temperature changes in summer, even if you are generally feeling warm. I told the woman I have Raynaud’s disease then, when she looked blank, gave her a brief explanation. She stopped laughing, her face changed to a mix of embarrassment and pity, and I started to wish I’d just said “yes, I’m cold.”
I have a lot of these kinds of interactions with people. There’s always an internal debate for me about whether to explain my health problems (and if so how much to tell) or whether to steer conversations in the other direction. During summer, I spend a lot of my time blindly agreeing with people in discussions about the weather:
“Aren’t you glad it’s sunny?”
“No, I’m covered in hives from sun-sensitivity, I’m overheating from having to wear longs sleeves, and I think I just got sunburnt through two layers of clothing and 50+ sunscreen. Yes, it’s lovely, isn’t it?”
because it’s easier than explaining lupus to the many many people using the sun as a conversation opener.
For the most part, I try to be open about my health issues, where it’s appropriate. Sometimes I probably overshare, though there are also times when I actively avoid being honest about what’s going on, even with people I’m close to. Earlier this year, my pain levels began to increase as my joint symptoms became more active, and I also began to experience more allodynia-type pain as a result of not sleeping and the stress that was causing. For quite a while, I didn’t tell anyone about this, even my friends from pain clinic. Initially this was because I thought the pain might go away on its own, but when that didn’t happen, I didn’t want to tell anyone because then I would have to acknowledge that it was really happening. I was also worried that if people found out they would react by trying to hug me, which is the last thing you want when you’re in a lot of pain! As is turns out, the first person I told did in fact go to hug me straight away, but that ended up being a good thing as I found out that this time around physical contact isn’t anywhere near as painful as I’d remembered it being. Discovering this reduced some of my distress around the situation, so while I am still experiencing heightened pain on and off, it’s not making me feel as lonely or isolated as it did at the start. In this instance keeping the issue to myself had not been sparing me any emotional or physical pain, but instead increasing it.
I was talking to a friend about some of this the other day, and they brought up the idea that when you have big health stuff happening, it’s sometimes nice to have that one person in your life who doesn’t know what’s going on because then you can just feel normal with them. A few months ago when I had a tough situation going on, a friend from oversea made a joke that, given the circumstances (which he of course didn’t know about) was amazingly inappropriate. That actually made it just that much funnier to me, and the resulting hysterical laughter was exactly what I needed. When people don’t know what’s going on, they won’t hold you by the edges, treat you as fragile, or push you to deal with problems when you’re not yet ready to. Instead they will just carry on as if nothing has happened because as far as they know nothing has. This can make conversations with them feel safe and easy, however on the flip side of that, after a while not telling people can create a sense of disconnection in your interactions, as it’s like trying to talk to them through an elephant enclosure. They may treat you as if you’re normal, but if you don’t actually feel like you are that “normal” person anymore, the relationships can start to feel fake as if you are playing pretend rather than being authentic with them. One approach I have found that seems to strike a balance between the two, is to let people know that something is going on but also let them know that I’d rather keep the conversation light. For example saying something along the lines of “Yes, things are really tough at the moment, but I’ll figure it out” feels honest, but also stays in that easy comfortable zone. If I know the person well, I’ll even just answer “how are you?” with “meh” and then change the subject, as this removes the need to lie and say everything is fine, but also still avoids getting bogged down in.
After writing all this down, I don’t think I’ve come to any conclusions about which is the best course of action – to tell or not to tell – other than to say that finding the balance of how much to share and when is really difficult, whether it’s with strangers or with friends. Over time I’ve learned to recognise when the level of openness in a relationship doesn’t feel right anymore and to make an effort to try change that, either by sharing less or finding ways to be more honest (or at least not to lie and say everything is fine.)
Thanks for reading,
Little Miss Autoimmune
P.S. Believe it or not, when I sat down and started writing this was supposed to be an update about what happened at the sleep-specialist appointment, but I got a bit side tracked. I’ll post an update about that soon… probably…
Yesterday I read this piece written by a fellow autoimmuner, Ashley, about her reluctance to call her rheumatoid arthritis drugs "chemotherapy." It was interesting timing for me, as I'd recently had a conversation where I'd referred to my meds as chemo and then immediately regretted using the term. Once it was out of my mouth, I realised it sounded far more melodramatic than I'd meant it too.
Ashley's article gave me some things to think about. Firstly, I'm truly sorry if I have offended anyone by using the term. I was in no way intending to "compete" or compare myself to cancer patients. My mother died from cancer a few years ago, and during her journey went through chemotherapy. I do understand that cancer and chemotherapy chemotherapy are horrible experiences, and I mean no disrespect to anyone who's gone through that by using the same name for my medications.
I don't always refer to my injection as chemo. In the conversation I mentioned above, I'd been about to say I was going home to "shoot up," then realised that might be a bit inappropriate, so changed tack at the last minute and said I was going home to "do my chemo" instead. I usually just call my medications pills and injections, unless someone specifically asks what my drugs are in which case I explain that the injection is a low-dose form of chemotherapy, one lot of the pills are an anti-malarial drug (I actually took this same medication as a malaria-preventative at times as a child) and that I'm not quite sure what the third lupus med I take is. I also explain that the point of all of them is to squash down my immune system, so it won't be able to attack my own cells anymore.
So why do I use the term "chemo" at all?
Ashley suggests that for some people this might be a way to draw pity, or to misrepresent the situation to make things seem worse than they actually are. I don't think this is the case for me. I don't like having people pity me, and to avoid it I usually make jokes about my situation. This works pretty well, except for the fact that it does then make it harder to communicate the more serious aspects of these diseases when necessary. I find I can't tell someone something serious without wanting to follow it up with something funny or to cut the conversation off completely. As soon as I see people making what I call Pity Faces, I want to make the conversation lighter because it's hard enough to deal with my own feelings about this stuff without making other people feel upset as well.
In a way, using the word "chemo" makes it easier for me to communicate these serious aspects and answer people's questions without having to actually have the conversation properly. Some examples of this are:
Question: Why are you vomiting? Why would you take a medication that makes you so sick? Isn't this supposed to be making you better?
Answer: Well... it's chemo. (Also, stop asking me asking me complicated questions while I'm vomiting!)
Most people think of medication as something that makes you feel better, so it's hard for them to understand taking something that at times makes you feel worse. Explaining that it's a low-dose chemotherapy helps people understand that while this might make me very sick for a few hours, it is ultimately still the thing keeping me healthy. No it doesn't make me as sick as someone receiving chemotherapy for cancer - it is only a fraction of dose - and no I'm not the same type of sick as a someone with cancer. But it is the same concept.
Question: Why did you just back away when I tried to hug you? I've only got a cold. Are you germ-phobic or something? (coupled with sad/offended look)
Answer: Sorry, it's just that I'm on chemo, so if I get a cold... I can get really sick.
I hate offending people, and, depending on who you are to me, I probably would hug you back if you weren't sick. But when you're on any kind of immunosuppressant medication, getting sick - even just with a cold - does actually become a big deal. Something I've learnt the hard way after many respiratory infections! I used to try and explain to people that my immune system was squashed down by the medications I'm taking and therefore I can't fight off bugs. So, if they have a cold or the flu, I'd prefer to keep a little more distance than usual just for now. But by the time I'd got through that they'd either already hugged me before I could stop them or taken umbrage at my refusal. I also found the explanation didn't seem to stick. The next time someone was sick, we'd have to have the whole conversation again. Using the term chemo seemed to clarify this with people. Now, after I've explained once, people usually remember and automatically give me a bit more space if they're not well.
Question: Why aren't you coming out tonight? You seem fine.
Answer: Yes, I'm fine right now, but I'm doing my chemo tonight.
Not everyone gets side effects from autoimmune arthritis meds, but unfortunately I am one of the ones that do. I got very bad side effects on the tablet form because of the inflammation in my stomach, which is why I'm on injections instead. At lower doses, I didn't have too many problems, but now I'm on a higher dose I do get sometimes get nausea/vomiting, the shakes, bad headaches, or pass out, on injection night. It can mean that in a short space of time, I go from being fine to really not. So I don't go out and don't let people come over on the night I do it. I'm also a bit careful about what I plan for the next morning as if I do it too late in the evening I'm still sick the next day. I don't want people to feel sorry for me about this, but I do want them to understand that I'm not just ditching them - I would like to be there for whatever it is they're wanting me to do, I'd just also like to save our friendship from ending with me spewing on them!
Question: Why aren't you drinking? One drink won't hurt. Oh, go on...
Answer: I can't, I'm on chemo.
To be clear, I only end up saying this if people won't accept "No, I really don't want a drink" and continue to press the issue. This one is complicated, because there are a lot of reasons I don't drink and blaming it all on my meds a little misleading, unlike the other examples I've used here which are honest answers. I have had problems with both my liver and kidney function in the past, because of my medications. These are both okay at the moment, but the tests do still fluctuate a little. When I was still drinking alcohol occasionally, I did notice a correlation between when I had a drink and when my tests results went out. The other major reason I don't drink is that I get uncontrollable muscle spasms and tremors when I do, which are inconvenient and distressing for everyone involved. This isn't something that people can be expected to comprehend, unless they've seen it, so putting it all down to "being on chemo" is the easiest way to get the message that I can't drink, and won't change my mind, across succinctly.
As I said, Ashley's article has given me a lot to think about. Again, I am very sorry if my using the term in this way has upset anyone. This wasn't my intention, I just hadn't thought through how it might feel for some people hearing a word like "chemo," when it's not fully explained. I'm going to give some consideration to whether I continue to use it, or whether it's time to find a new way to communicating this stuff to people when necessary.
Thanks for reading.
Little Miss Autoimmune
