What I Wish Someone Told Me When I Was Diagnosed With Rheumatoid Arthritis

I was 15 years old, and I could barely walk. As I hobbled around school, it felt like knives being jabbed into my hip. Two months later, I sat in a room with my parents and a rheumatologist as he told me I had juvenile rheumatoid arthritis. All I could see in my mind was my grandmother, who also dealt with RA, lying in bed, unable to do anything for herself.

It was a terrifying mental picture for a young man just starting this journey, and one I was sure my future held. In three short months, my hip had been destroyed, and we had to take drastic steps to try to slow things down. As I shoved dozens of pills down my throat each day (which eventually led to a hole in my stomach and emergency surgery), my future, many days did not seem bright – in fact, they seemed terrifying.

While I did find some who helped and encouraged me on my journey, in many ways I felt alone because no one understood that path I was on. Now, 31 years (and three hips) later, as I look back on those early days, I wonder what it would be like to talk to that younger version of myself. If I had the opportunity, what would I tell him – what would I wish someone would have told me?

As I thought more and more about this, I realized that these five things are the ones I most wish I had known then.

1. Your life isn’t over because you received a rheumatoid arthritis diagnosis.

That day, it felt like I was given a life sentence. It may have been a life sentence, but it was not a death sentence. My life was not over with this diagnosis. It felt overwhelming and impossible to face and deal with. On that day, and many days after, I needed to be reminded that my life was now different, but it was not over. I needed to simply take a breath and take it one day at a time.

2. You don’t need to prove anything to anyone.

I also needed to know that I did not have anything to prove. Sometimes, I felt like less of a person or a failure, simply because I was unable to do something. I often refused help and pushed myself too hard because I did not want to show weakness – I felt like I had something to prove. In reality, I did not. I needed someone to tell me that getting help did not mean I was weak, and that I did not have anything to prove, even to myself.

3. The mental battle can be as harder — or harder — than the physical battle with rheumatoid arthritis.

Years ago, a friend told me, “Pain is the great confuser.” How I wish I had heard those words 30 years ago. I never appreciated or understood that in some ways, the mental battle is as hard as the physical one. Chronic pain wears on a person – physically, emotionally, and mentally. Sometimes, the battle in my mind is harder to face than the physical pain of each day. It is those times that I need another to help me realize this and remind me of the truths that sometimes are overshadowed by the pain.

4. You can dream new dreams and live a fulfilling life with rheumatoid arthritis.

When I got this news, it felt like all my dreams, all my future, vanished in a moment. I could not see how someone would love me, how I would be a father, or how I would do all that I had dreamed of doing. What I failed to realize is that, just because some dreams died, did not mean other new ones would not come. In reality, I still had a future. It might be different, but this diagnosis did not mean my future was dead.

5. Keep moving forward, through good days and bad days.

Finally, I would tell myself, there will be good days and bad days, days of fear and days of hope – both are OK, face them, and keep moving forward. Many times, I would beat myself up for bad days, or try to hide my feelings from others, but in reality, I was only fooling and hurting myself. Tough days are OK, and it is OK to admit that, for only when you do, can you truly face tomorrow.

Just like 30 years ago, I still do not know what my path will look like, but if I remember these things, and truly live them, I can face what tomorrow brings. For in spite of my diagnosis, I still have a future, and I simply need to take it – both the good and the bad days – one day at a time.