“It’s Okay” and Other Things I Would Tell Newly Diagnosed Me
The last decade has been a roller coaster of medications, lifestyle changes, emotions, doctors, surgeries, and general craziness. I’ll be honest: 20-year-old me was NOT ready for it.
20 years old and an RA diagnosis
20 year old me was a college student. She was completing her first-choice major, in her first-choice career track. Things were great. She had never been sick except for recurring sinus infections. She had heard of chronic conditions, but she had no first-hand knowledge of them or what it was like to live with one.
I had no idea what my diagnosis meant
When I was diagnosed, I felt scared, a bit lonely (nobody I knew had an autoimmune), and worried about my future. Those are pretty normal emotions after being told I was going to live with an illness for the rest of my life.
However, I had NO idea what that diagnosis meant. I just plowed through life like nothing changed. I didn’t even tell anyone (outside of work and family) that I had rheumatoid disease.
What I'd share with my newly diagnosed self
I know time travel doesn’t exist but I wish I could talk to older me and ask some questions and get some advice. So, in honor of my first ten years, I am sharing a few things I would tell my newly diagnosed self!
1. It’s okay, life isn’t over
I honestly thought it was. All I wanted in life was to be a veterinarian and it seemed nearly impossible to be one with a physical disability. If I could barely get up the stairs how in the world could I handle animals twice my size? I had to put my vet school plans on hold at the time and I felt absolutely terrible about it. I thought my diagnosis ended my life as I knew it. What I wish I knew: I have limitations but I can accommodate them and life might even be better.
2. Take time to process
For me, learning about rheumatoid disease and how it would affect my life felt a lot like grief. I felt like I had lost my life and I sort of did. Life as I knew it was over. I tried to ignore my feelings, I tried to push through as though nothing was wrong and it made matters worse. What I wish I knew: like losing a loved one, I need to process this new information, understand it and only then could I move on and fight.
3. Don’t rush, be patient
Interestingly, I was not a patient person. I wanted everything and everything to happen now. I would push myself at warp speed and felt most comfortable when I was doing something. You can imagine my frustration when I found out I had to wait for my medications to work. Sometimes I wouldn’t see any improvement for three whole months, like with some biologics.
Do you know how much I could get done in three months? What I wish I knew: I will find medications that work, I will find good disease management but it won’t be overnight. Stay vigilant, take your time, and be patient. Everything will work out.
RA has taught me a lot in different ways
With time comes wisdom, and when you’re that young you often feel like the sky is falling when you get news like this. I tried to imagine my life in ten years and couldn’t fathom that I could live a good life. But, while there are many, MANY things I would change, I am happy.
In fact, the RA may have made my life better in some respects. I’ve learned to slow down. I’ve learned how to accommodate myself. I have learned empathy and sympathy and I have met some of my closest friends (hey Kelly and Richard!)
20-year-old me could not see past the diagnosis and I wish 30-year-old me could reach back in time, pat myself on the back and say, “It’s all going to be okay”.
Right now, what RA tips would most be helpful for you?