The Waiting Room

This could take a while...

Thursday, November 06, 2014

I Feel Your Pain

Posted by Seeking Solace |

One of my good friends was recently diagnosed with RA. I feel terrible for him. He's been dealing with a lot lately and this diagnosis is the last thing he needs. However, it is a relief to know what is the cause of his health problems. 

We talked at length about how he has been feeling. He said that while he always had sympathy for what I was dealing with, he truly empathized with my struggle with RA and could understand how debilitating the pain and fatigue is.  He said that he would not wish this on anyone.

After our conversation, I though about something that one my close friends from Lake Effect Snow Central said about autoimmune diseases. My friend, who has lupus, said, Autoimmune diseases are the best looking disease to have because no one knows you are sick. And, that's the problem.

For me and anyone else with autoimmune diseases, we do not look sick for the most part. Unless the disease is in an acute state, like a flare, we look perfectly fine. But when the disease acts up, it's like night and day. For me, I can go from being able to run a 5K to barely being able to walk five feet. I can barely do the simplest of tasks like brushing my teeth because my hands are swollen and hurt.
But, that's not the worst part. It's bad enough to be in pain. but when you body is being attached by your own immune system all day, every day, Sundays included, it is exhausting. No amount of extra sleep can help with that kind of exhaustion. That is, if you can get any sleep because even the pain can keep you awake.

When you don't look sick, people have a tough time believing that you are sick. Often, people with autoimmune diseases get very little support or sympathy. They are called fakers. People say that the pain is all in their head. Many people have told me to just take an Advil for the pain. Some will say that I am too young to have arthritis, because that's an old person's disease. A few have told me to "suck it up". Yet, we would never say to someone with cancer or Parkinson's that it's in their head or that they are faking it. Would we say "suck it up?" to someone who cannot control the tremors in their hands or that they had their hair because of the treatment for their disease? That would be met with scorn. But somehow, it's OK with autoimmune diseases because we don't look sick. And if you don't look sick, it must not be that bad, right?

That's just wrong on so many levels.

On the plus side, there is a great deal of support out there from the very people who deal with autoimmune diseases every day. Those of us with autoimmune diseases have to be advocates for our disease. When I was first diagnosed, my friend who has lupus was a great source of support. Now, that my friend has RA, I intend to pay it forward by being support for him.

After all, I feel his pain.  


JaneB said...

much empathy... mental health problems are very similar. I am so sick of being told to just cheer up or stop worrying. if only it was that easy!

Seeking Solace said...

Agreed! I've battled depression/anxiety for many years. People just do not get the invisible illnesses.