Communication - to tell or not to tell

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…

Popple-Ox

I noticed this morning that my hands are covered in little blisters. This isn’t really a good thing – they’re annoying, painful and itchy, but when I saw them I had a moment of reflective thankfulness. A few years ago I had these blisters constantly. They’d go through cycles of appearing, then popping and bleeding, then just as they were starting to clear, new ones would appear. I had a couple of years where I couldn’t make fists, because every time I did my knuckles would split open and bleed some more.

It’s been a while since I’ve had this problem. In the last few years, they’ve appeared a few times when I’ve had particularly bad systemic flares, but it’s been a long time since they’ve been an everyday problem. So much so that when I first felt them on my hand this morning, it took me a while to recognise what they were. I realised I haven’t had them once in the time since my Raynaud’s first appeared, as I couldn’t work out whether wearing gloves would be helpful or harmful to them (my hands were cold so I decided to risk it.)

I’m hoping this flare up will pass soon as I’m not enjoying my hands being itchy and gross, but I’m so thankful that I don’t deal with this everyday anymore, I can deal with it for a few days.

I just looked up the proper name for this rash as I couldn’t remember it: pompholyx. I was thinking something that sounded like Popple-Ox. I don't think I was that far off, but I'm not sure my dermatologist would agree!

Thanks for reading!

Little Miss Autoimmune

Sick-Cycle Carousel

You go through many cycles with chronic illness. Flares. Remissions. Good days, bad days, round and round and round.

I knew posting about things being good was a bit of a risk. There’s always part of me that thinks The Universe is going to go “Oh, you thought things were going to stay good? Haha, nope! Here’s a flare.” And that did kind of happen a little bit after I posted about how well things were going.

A couple of days after writing this post, I had my monthly blood test and my labs were out. Considering my labs are usually normal even when I’m badly flaring, it was a bit worrying. Since then, most of the things that had got better stayed better (Yay!)... but some other new symptoms popped up*. And so the cycle goes round and round and round.

Another cycle that will be familiar to many others with chronic illness is the grief cycle.

I’ve been struggling quite a bit with dropping things lately. I’m not entirely sure what’s causing it – my guess would be a combination of pins and needles, tremors and raynaud’s. Whatever it is, I’m decidedly more fumbly that I used to be. And my poor dishes have not been faring particularly well! Last count, 1 glass, 2 bowls, 1 mug, 1 dinner plate and 1 side plate have fallen victim to my hands. Plus a few other things are now either chipped, or have learned to bounce. Even when the crockery itself doesn’t break, just having the contents go everywhere can be annoying enough. I really wasn’t sure whether to laugh or cry when I dropped an entire glass of almond milk into an open drawer. Don’t be fooled by the almond part – after a couple of days, it smells just as bad as normal milk!  

So, after being upset about this for a while, I got this pretty awesome drink bottle (or three of these drink bottles to be more accurate.) And on the day I bought these, I was really happy, as I now had a solution to this problem. But then I had to grieve for a while, because finding a solution made me think again about the fact that there was a problem in the first place.

Similarly, I’ve been avoiding ordering drinks in cafes, or having anything other than water out of my bottle at other people’s houses, due to not wanting to make a mess or break other people’s stuff. I was thinking about this today, and I realised I could easily ask café staff or friends to put drinks in a mug or paper takeaway cup. I might get a few awkward questions as to why, but with Molly-Stick around I get awkward questions anyway.  It’s not a perfect solution, as even with the handle I do sometimes drop mugs, and takeaway cups are hardly environmentally friendly, but it’s a solution none the less. And so again, I had to grieve about the fact that I had a problem that needed a solution.

Remembering that it is a cycle does help. Bad days suck, but good days are part of the cycle too. And the cycle of grief, it is a bit of an emotional rollercoaster to be upset by both the problem, and the solution to the problem, but I’m kind of an emotional person. If I wasn’t getting upset about that, I’d probably be crying watching Shortland Street, or something equally ridiculous (by the way, totally cried watching Shortland Street last night.)

There’ll be good days, and there’ll be bad days, and I’ll cry about stupid things. But sometimes I’ll laugh about stupid things too. With the almond milk, I settled on laughing.

Thanks for reading

Little Miss Autoimmune

*I will post properly about this at some point, but still a bit too close to it to talk properly about it yet.

No-Handshake Awkwardness

Like many people with forms of autoimmune arthritis, I find it difficult to shake hands. The joints in my hands are often swollen and painful, so if someone goes for a firm job-interview type grip it’s likely to be excruciating for me. I have Raynaud's phenomenon, which mean I wear gloves or mittens all the time and somehow that just seems too much like shaking hands with a sock-puppet. Added to that, I walk with a crutch on my right-side, so if I’m standing I’m going to have to juggle crutch, bags and balance issues to be able to greet you.

I don’t expect anyone to be psychic. Even if you know someone has autoimmune arthritis, that doesn’t necessarily give you an idea of whether they will or won’t shake your hand, as it affects people in different ways. This can sometimes lead to some awkwardness, when a handshake is refused. Of course no-one wants to be left hanging, so I’ve compiled a handy list of appropriate and inappropriate ways to deal with the situation.

Appropriate Responses

• Carry on as if nothing has happened

This is really the best way to go. It’s not really a big deal, and the quicker you move on the quicker the awkwardness goes away.

• Acknowledge the awkwardness

If you don’t feel you can just move on, acknowledging the fact that the situation is a bit awkward, and then moving on, is a good way to go. 

• Laugh

Not at the person! Never at the person. But if you can all laugh when you feel uncomfortable, it breaks the tension and all is well in the world again.

Inappropriate Responses

• Insist on shaking hands

If someone is refusing to take your hand, whatever the reason, don’t push them. Often if the issue is pushed, I feel I have to relent and shake hands. This may seem like it makes the awkwardness go away, but it will likely cause me pain which will result in me avoiding you in future.

• Punch the person

Sometimes you might want to try and find an alternative to shaking hands. There are some alternatives that are suitable – waving, a gentle pat on the back, a hug (depending on how well you know each other!)

Some things will depend on the person and how their joints are affected. A high five or fist pump may be okay (as long as it’s gentle) or for some people this may be even worse than a handshake. If you’re not sure, ask. 

Then there are other alternatives that are never a good idea – punching people hard on the shoulder for example (yes, someone really did this and yes they did then have to catch me when I nearly fell over.) FYI, people generally don’t like to be punched under any circumstances, but if you’ve just met them and they’ve just told you they have a chronic pain condition, this is a very bad idea and you’re likely never to see them again!

• Bring it up repeatedly/apologise repeatedly

You don’t really need to apologise in this situation. As I said, I don’t expect people to be psychic, so I’m not going to get upset that you didn’t guess that I don’t want to shake hands. However, repeatedly drawing attention to it, either by apologising or just making comments/jokes about it can get frustrating. There’s only so many times you can say “it’s fine” or fake-laugh before you start to feel silly and embarrassed. The quicker you move on, the better.

• Imply the person is germ-phobic and/or racist

This is a sure fire way to make a situation more uncomfortable! Generally if you make this kind of comment, you will get a stunned silence in reply as the person tries to figure out whether you’re serious or just have a dark sense of humour. I think the time this happened to me, it was a case of weird sense of humour, but I felt horrible about the possibility that they really were offended. In general, try not to take offence about the fact that someone won’t shake your hand. It’s not about you – a greeting is just not worth that much pain.

- Little Miss Autoimmune