“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”.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?