You Can’t Judge An Illness By How A Person Looks

I have Complex Regional Pain Syndrome and I don’t look sick. But every day my body is in varying degrees of  pain.

In 2010 I was in a pretty devastating car crash. It turned my life upside down – literally. Among other injuries, I had my back fractured and I lost my left arm. But it was the damage from the frostbite on my feet that eventually led to a diagnosis of CRPS several years following the accident. Since developing this chronic illness, pain is something I’ve come to know on a very intimate level.

Complex regional pain syndrome – CRPS – is one of the most painful conditions known, registering a staggering 42 out of 50 on the McGill pain scale. That is worse than the pain of the amputation of a finger or toe with no anesthetic, which registers as 40 out of 50, and it is said to be worse than childbirth.

The most excruciating part is that the pain is long-term, most likely a lifelong thing. CRPS is known as the world’s most painful incurable condition. In the United States, it is referred to as the “suicide disease” because so many people resort to suicide as the only means to escape it.

Another difficult part is that CRPS is not a well-known disease. I have encountered medical professionals who don’t know what it is and I have had to explain my diagnosis to them. They often have a hard time believing the pain is as severe as I describe it. They don’t believe me that it feels like there is barbed wire wrapped around my legs. But you seem to be walking ok, they said. Or, you look like you are doing well. I can’t tell you how frustrating that part is.

So I stopped describing what my pain truly felt like to me. I don’t say that it feels like there are a hundred ice picks stuck into my spine. Instead, I just say my back burns. It seems to be more accepted that way. Which I have to admit, feels quite invalidating. In my experience, the more graphic (and accurate) the description of my pain is, the less likely I am to receive adequate treatment. So I often dial back my pain complaints. It tends to make friends and family question it’s validity because I look great!

So I repeat it again – you cannot judge an illness by how a person looks.

🦋