Katy Hart's patient story

Rheumatoid arthritis is a destructive joint disease that is caused by inflammation in the tissue that normally produces lubrication fluid for joints. When this tissue remains inflamed, it leads to deformity by loosening joint ligaments and to joint destruction by eroding away cartilage and bone.

Generally, when someone tells you that they have a medical condition, you naturally want to help by telling stories about someone that tried this and that and it worked really well for them. I used to do the same. I have found that this can be unintentionally hurtful because it makes the person feel as if the condition and suffering they endure is dismissed. Or as if there was something more they could, or should be doing.

Unfortunately, there is no cure for rheumatoid arthritis and this has changed my life significantly. It is a degenerative chronic illness, that not only impacts my bones but can also affect my organs.

It has changed things not only for me but for my family. I can not work full time as well as do all the things I love to do as a mother and a wife. I can not put my body or my family through what we would have to endure to have another child.

I am currently having my Actemra infusion. I have been on this biologic treatment for three years now and thankfully it is working pretty well. I have tried four biologic drugs before this one, but unfortunately, they did not work for very long, or very well. I have bone damage to my hands and feet. It’s expensive having RA, but at least I am in a country where I can actually receive treatment!

I also take many other medications for my RA, including daily steroids to help with swelling and anti-inflammatories to help with pain.

If you are not sure what to say to someone who is living with a chronic illness, here are a few phrases I’m totally fine with:

  • That really sucks!
  • I’m really sorry this has happened to you.
  • Is there anything I can do for you?
  • Would you like me to make a meal for you?
  • Should we go have coffee and cake… or wine and cheese? Hehe.

Generally, health advice probably won’t really be appreciated… depending on the person. I know that it comes from a good place, but I would stick to something along the lines of what I have written above.

This has been something I have struggled with over the years and I felt that I am in a healthy place to say something. Hopefully, it will benefit someone else!

Katy Hart