Arthritis Awareness Month: My RA Story

the beginning: compression gloves

May is Arthritis Awareness Month. It is also Mental Health Awareness Month, and the two can absolutely go hand in hand. While rheumatoid arthritis is typically acknowledged in September, I have been wanting to share my story for too long.

It’s been a weird past 3 years. I share this for awareness and to educate others that yes, young people live with arthritis.

In the fall of 2020 I was living in covid isolation in Hawaii when I began struggling with joint pain/deformity, skin problems, heart problems, in addition to extreme eye sensitivity.

It wasn’t until spring of 2021 when I was diagnosed with rheumatoid arthritis (RA) prior to a heart surgery. I never made the connection that the reappearance of my heart condition (WPW) was related to this inflammatory disorder. There are many different types of arthritis. Rheumatoid arthritis, however, is a chronic autoimmune disease that affects the joints as well as organs.

I could not say “I have rheumatoid arthritis” for the longest time, because I had been in denial that I had it. I live with C-PTSD and I am always aware of how my illnesses coincide with the stressors of my trauma. I thought if I managed my mental health, worked harder in therapy (whatever that means), had more positive thoughts, and ate healthier, that my arthritis would simply go away. That was not the case.

When I was first diagnosed I cut my hair very short because I couldn’t hold a hairbrush. I could barely turn a doorknob, and became frustrated at how long it would take me to key into my apartment. Very few shoes did not hurt me. I wore sunglasses indoors, and blue light glasses. When my heart condition worsened, so did my other autoimmune conditions. I became desperate for a new prescription of steroids. I could not walk or use my hands without them. My fingers changed shape and ability, my hand developed a ganglion cyst, I lost too much weight, and none of my clothes fit me.

I initially tried one medication that gave me the worst nausea and brain fog that I could not finish my sentences. I then tried injections of a different medication last spring, which also brought horrible results. I left work, unable to feel my arm aside from a tingling sensation. I went to the ER because my doctor expressed worry that I was having a stroke. Thankfully, I wasn’t, but was told to stop the med immediately.

Rheumatoid arthritis has certainly given me embarrassing moments. When I was living alone, I was unable to ask for help when I couldn’t open something. I am stubborn. I used my teeth too many times, until I held a piece of my front tooth in my hand. I got a filling, but it was certainly a wakeup call. Several times, my arm had been stuck in a bent position with a swollen elbow for a full workday and I could not straighten it. When I want to hide my knee braces, I try to wear skirts or baggy pants. Looser clothing also helps because tighter pants tend to suffocate my swollen knees. I love baths, but I also would feel so defeated when I had trouble getting out of the tub.

When I started my job, I was required to take a CPR test. I had an anxiety attack beforehand. I’m sure very few people were crying before their CPR test. I did not know how I would pass, as my wrists would not allow me to put pressure on my hands. The instructor was understanding, I did pass the test, but I know the light on the dummy did not appear once.

I would sob every single time I went to the rheumatologist. Every treatment method recommended to me has side effects, many that affect my other health conditions. I had listened to doctors tell me that without treatment my body would fail me more, and I would be handicapped before my old age. I had held off on trying a new medication for so long, because I was terrified that I would need another heart surgery. Many people do choose to manage their arthritis naturally. For me, I’m not sure that will help enough.

hopeless rheumatology visits

Where I am today:

I found a new rheumatologist, one who doesn’t make me cry, and provides hope that someday I will live life without feeling like I have rheumatoid arthritis. I am finally on a medication that seems to be working, I am on a much lower dose of steroids, and I hope to be completely off of them by next year. I am not where I started, but I am not where I want to be. All I can do is find things that help, even if they are not cures. I have learned other ways to manage my RA. I have found that swimming helps, more omega3’s in my diet and anti-inflammatory foods help. I also advocate for myself and work from home when needed.

I do get sad quite often. It is hard not to get frustrated with my body. It is hard to tell others, “I can’t do that.” I miss not having to explain myself. I miss running. I miss riding a bike. I miss the little things like being able to put my hands flat on the ground and support myself in yoga poses. I don’t like the sound of my knees cracking, or being unable to walk downstairs after a day of ordinary movement. However, I know I’m not the only one. I know that this disease is only teaching me how to take care of my body and make smarter, healthier decisions. My body reminds me it has been through a lot, and it deserves care now. I’m learning that I can still live a full life- even while navigating RA.