What not to say

This is a blog post I’ve been wanting to write for a while but I’ve kept delaying. I’m currently procrastinating doing a number of other things, so thought now might be a good time.

You may have seen some of the “what not to say” posts. These crop up from time to time on different sites: “10 things not to say to someone with RA,” “Things not to say to someone with IBS” etc.

 
There’s one thing I’d really like to tell people not to say. Well, actually two things, but they’re similar.

1) I have a high pain threshold

2) Well, I never get sick

Now before anyone gets offended, I don’t mean if you’re talking about yourself. It’s absolutely fine with me if, while you’re telling a story about your broken leg, or the time your liver exploded, or some other painful situation, you feel the need to concluded with: “but I coped fine, because I have a high pain threshold.” Sure. If your liver exploded then feel free to tell me about your high pain threshold – I have no problem with this. Except... I would have a little bit of trouble believing that you were still alive post liver-explosion, so I would probably have to conclude you were lying.

My issue, is when “I have a high pain threshold” is considered an appropriate response to “I have autoimmune arthritis” or “I have a chronic pain condition.” Especially when it is said with the air of this being an achievement. A high pain threshold is NOT something you have achieved any more than having a head is an achievement. It’s just something that is.

To be fair, it’s usually preceded by “Oh, well I’m lucky, I have a high pain threshold.” Even so, this is not an appropriate response at this time.To me, this comment is equivalent to if you met someone who was an amputee and said “Well, I’m lucky, I have two legs.” It is not relevant. It is not helpful and it’s insensitive.

My issue with the second comment is similar. If you are just for some reason bragging about your lack of sickness, that’s fine. Perhaps you are recounting the time you were exposed to Small Pox, Ebola and Measles all in one day, and yet still didn’t get sick? In this case, by all means tell me about how you’re lucky to never get sick. If I have just told you about how I had to take time off work because of______ illness, perhaps not the best time to tell me about your perfect health.

Again, with this one I object to it being touted as an achievement. If you eat well, exercise regularly, meditate and don’t smoke, drink or do drugs – then you may consider being healthy an achievement. Unfortunately, I most often hear this comment from smokers who I know have bad eating habits, and don’t exercise regularly. I’m sorry, but the minute those words come out of your mouth Schadenfreude takes over and I want you to get a cold* because you’re getting all high and mighty over being well when you’ve done nothing to deserve it.

*I only want you to get a cold though – nothing more serious because I’m not a horrible person, I promise.

The other thing I object to with “I never get sick” is it is often expressed as if it is a piece of advice. As in “Oh, you had to take time off work because you were sick? Well, you see what I do is I just don’t get sick – revolutionary, I know.” 

Again, you are lucky to not get sick. And by the very nature of luck, it is uncontrollable.

I don’t say any of these things to people who make these comments. In fact, I usually say nothing at all – just take a deep breath and wait until the subject is changed. I’m writing about them here though, because if you’re reading this, I hope you’ll stop and think before you respond either of these things.

 
People who have chronic pain don’t have a problem with it because they have low pain thresholds – they’re just in a tremendous amount of pain. Before I was diagnosed with Psoriatic Arthritis I was told by medical professionals that I have a high pain threshold – it doesn’t make a difference. I’m still in a sh**load of pain now.

People who have autoimmune disorders are often on immunosuppressant drugs. Their immune systems are squashed down, making them susceptible to every bug and germ out there. They have to work hard just to not get sick often.

 
I think sometimes people say these things, because they don’t know what to say. It’s hard to know what to say when someone is sick, particularly when they are always sick. My feeling is, if you don’t know what to say, think about what you want to convey to that person. Do you want them to feel heard? Do you want to let them know you are there for them? When you know that, I think the words will probably come and my guess is, they won’t mention pain thresholds.

Thanks for reading

Little Miss Autoimmune.

My onset story

This is me, at age nine, just before my onset of Psoriasis and Psoriatic Arthritis.

When I was nine, my parents took me and my sister to South Africa – most of my dad’s family were living there at the time. Because some of the areas we were travelling to had a high risk of malaria, we had to be on anti-malarial drugs as a precaution.

We didn’t know this at the time – and chances are even if we had it wouldn’t have changed anything – but certain anti-malarial drugs can bring out Psoriasis in people who have the gene, but no current symptoms. I say knowing this probably wouldn’t have changed anything because my mother and I didn’t know that we had the Psoriasis gene. Even if we had – the risk of malaria probably would have outweighed the risk of what we initially thought was a minor skin complaint.

When we returned to New Zealand, I fell over and grazed my leg. That in itself wasn’t anything major – except that the wound never healed. Six months later, the area that had been cut had turned into a raised scaly patch. I soon found that any broken skin did the same. Being a reasonable active (and clumsy) nine year old, I was soon covered in similar patches. This was the onset of Psoriasis.

A few months later, I developed excruciating pain in my right thumb joint. As I was at school and spending a lot of time writing, it was assumed I’d developed RSI. After a few weeks of resting it, the pain got a little better. It never quite resolved though.

At the beginning of the next school year, the pain came back worse than ever and this time it wasn’t just in my thumb. All of the joints in my hands and feet were affected, and several of my larger joints were too.

I believe the anti-malarial drugs were the trigger for my Psoriasis and Psoriatic Arthritis. Ironically, these same drugs can be used to successfully treat other types of autoimmune arthritis.

As you can see from the photo, I wasn’t overweight at the time of my onset. Full disclosure – at times during my childhood I was overweight. When I was ten/eleven, I put on a lot of weight after large amounts of steroids for my asthma (those same steroids probably put my arthritis into remission, meaning my early teen years were relatively arthritis-free and I wasn’t diagnosed until age 19.)

I mention this because there has been a lot of debate recently about whether obesity causes autoimmune arthritis. My personal feeling is no, it doesn’t CAUSE autoimmune arthritis. In some cases, it could possibly be a TRIGGER or one of several triggers, but that is not the same thing as it being a CAUSE. Just as, no-one would say anti-malarial drugs cause Psoriatic Arthritis – there would be a lot of unnecessary deaths from malaria if that was the case – but for me, with my particular genetics, the anti-malarials probably were a trigger.

My autoimmune arthritis numbers are 32-9-27.

Today is World Arthritis day. If you’d like to, please feel free to share you onset story in the comments, or comment on your thoughts about the weight-debate.

Or you can post “Your numbers”

“Your numbers” are a combination of three numbers we all have:
#of (approximate) weight at time of onset - #of age at onset - #of (approximate or what everyone thinks you are) current age. So mine – I was approximately 32kilos at age of onset, I was 9years old, and I’m 27 now. Weight can be measured in any system used in the country of residence; it’s the formula that is most important. All of us have those three numbers.

If you have facebook or twitter, please post or tweet your numbers – but keep it secret! Don’t publically explain what these numbers are until the end of the day.

You can follow this awareness event Here

Thanks for reading

Little Miss Autoimmune