Getting Your Diagnosis

What was it like finding out you had arthritis?

What was it like finding out you had arthritis? Is there anything you know now that you wish you had known then?


Photography of Dina-MarieI suppose after my diagnosis [of scleroderma] it was a relief because I finally had an answer after months of not knowing exactly what was wrong with me. But when I got my diagnosis, my mother was also in the room so she took it a lot harder than I did, because I had kind of self-diagnosed myself. Okay that’s a lie. I did take it hard, but I didn’t show it on the outside because, to me, I felt like I needed to be strong for my family and my friends who couldn’t quite hide their emotions when I told them this is what I have. So for me to accept it and come to full terms with arthritis and scleroderma, it was more just myself in my room having (it’s going to be sad to say), but having panic attacks at two o’clock in the morning and just having to go through multiple nights and months of basically crying myself to sleep, getting myself to accept that this is okay, that it’s okay to cry, and it’s okay to show weakness as well. 

[What do I wish I knew then that I know now?]  

One: stay off Google.  

Two: listen to your body as much as possible because you are going to want to push yourself to do the things/everything you could do before you were diagnosed but then you will be dreading everything you did because you either are in a flare or you can’t get out of bed because you are just exhausted from overworking yourself the day before. So it’s a balance. Honestly, it’s still a learning experience, and I think it always will be. Just being diagnosed with arthritis and autoimmune diseases, you learn every day. It’s kind of incredible.

Sectional divder


Photography of KiahYeah, [getting diagnosed] was kind of like this weird feeling. My mom has lupus and she was diagnosed before I was born so I always knew what it was and what most of the symptoms were. Before I was diagnosed, I had swollen joints, pain throughout my body, chest pains, shortness of breath, fever, and a cough. At first the doctors did not even want to investigate SLE [systemic lupus erythematosus] because it is not a hereditary disease. They were looking at everything else because they were like, “well you can’t possibly have gotten it just because your mom has it. The chances of you having it are so slim, let’s not invest our time into that.” I was sent to a rheumatoid arthritis specialist and she said, “I’m just going to test you for it anyways, and if it says negative it says negative.” I was then sent to get tested [for lupus] and it came back positive. This was such a rare thing that happened, and I was not prepared for it. So yeah, it was kind of “I know it’s not the end of the world” because I’ve seen how my mom has lived her life. She has been through so much, yet she has done so much, and it has not really stopped her from having a good life. But it also felt like, “This sucks” because it changes my life plans.

Just diagnosed with arthritis and not sure what to expect?  Visit the Arthritis Society’s Arthritis Types A-Z or our Patient Journeys to learn more.