I originally wrote this piece as a part of Rheumatoid Arthritis Blog Week. I decided to redo it a bit for World Autoimmune Arthritis Day. I often need to remind myself of all I have been through with this disease. Also, to show others that I took me almost 30 years to get any sort of diagnosis. Thirty years of feeling like a hypochondriac. Thirty years of struggling to understand why I hurt. This is a letter I wrote to my pre-diagnosed self.
Dear Pre-diagnosed Me,
Remember when you were 14 and your knees started to ache. You were told you had tendonitis and spent weeks on crutches throughout the years until you were 20. That sucked. At 20, you had arthroscopic surgery which showed nothing but inflammation. It took you months to recover. Your family and friends thought you were a hypochondriac because you complained how much it hurt during recovery. Yeah, that sucked, too. Then at 22 you started running fevers, couldn’t use your arms and were in pain constantly….and you were told you were too stressed and to work out more. That one sucked most of all because your doctor made you feel like it was all in your head. You didn’t have another major symptom until you were 31 and you were very unprepared.
Your pain started in your shoulders around February. You ignored it for a month because you were positive it was your thyroid levels being off that caused the muscle aches. Your doctor prescribed muscle relaxers and sent you on your way. At this point, you could barely uses your arms. Driving with your thumb only became the norm. By Thanksgiving of that year, you were unable to walk without a serious limp and couldn’t shop on Black Friday due to pain (your annual father/daughter day). Your dad took one look at you and said, ‘There is something really wrong with you if you can’t shop’. You were scared. Around Christmastime you were diagnosed with Sjogren’s Syndrome. You were told that it would take 8 weeks for medication to make you feel better. It ended up taking around 6 months.
You hit lows and serious lows over the next two years. You lost your sense of identity. You were no longer an able-bodied person. Then your rheumatologist will retire. You’ll find another rheumatologist who will tell you nothing is wrong with you because your blood work is good. He’ll want you to go off all of your medication even though all of your joints are swollen and red. When you ask why your joints are like this, he’ll respond, “I have no idea.” You keep searching and find another doctor who actually listens to you. By this time, you’ve been living with your diagnosis for 5 years. Slowly, this rheumatologist will help you find a cocktail of medication that helps you feel somewhat human again. It took almost 2 more years to have a good day. But it came. You still have flares from time to time. There are days when walking is very hard and the fatigue is overwhelming, but you also have good days. Now you are on a biologic that really works (after 5 years of ineffective step therapy). You did it. Never forget. Never stop fighting
Through social media you found others like you who wanted to spread awareness and see change within the #rheum community. You joined IAAM and cofounded IFAA. You are working with others to make a difference. Your journey is long and painful, but you are stronger than you know. Never give up. Believe!
As we celebrate #WAAD18 let’s remember to draw strength from our community and spread awareness about #autoimmunearthritis to the world.