First steps after diagnosis

First Steps After Diagnosis

Suzie Edward May
Member, Arthritis Australia National Consumer Reference Group (rheumatoid arthritis)
Author of ‘Arthritis, pregnancy and the path to parenthood’

I think when you live with RA, there’s a few things you need to do.

First of all you need to grieve your health and grieve your body when you’re first diagnosed. Grieve the life that you thought you were going to live. The second thing is make peace with RA, make peace with your diagnosis, make peace with your medications. Accept that unfortunately it is something that has come into your life but it’s something that you will and can manage. The third thing is find a way to live with your RA that’s going to empower you, not destroy you. Another thing that’s really important is to educate yourself.

I don’t think you can be empowered in this process without educating yourself about your diagnosis, about your treatment, about what is available to you. All of those things require education. You’ve got to keep yourself up to date because without doing that you can’t be that central person in this process, which you need to be. The patient needs to drive the process. You need to learn how to self-manage your condition. You need to learn how to self-care because if you don’t do that, you will become a victim to your RA.

After I walked out of that rheumatologist’s office, I thankfully had enough know-how, enough knowledge, to contact my local arthritis organisation and that was my first point of contact. It was a lifesaver because I went there and they gave me lots of information and I had a one-on-one consultation with a nurse who was able to educate me about what I’ve just been diagnosed with, about what the treatment was that I was about to start. I also very soon after that started a self-management course through my local arthritis organisation and that was a brilliant course because it taught me about what my disease was, what medications and treatments were available, what the blood tests mean that I have to have all the time, and also looked at things like exercise and diet and stress management strategies. So I did that quite early on.