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To the Friends Who Try to Understand My Disease, Even When I Don’t Understand It Myself

Naomi, the author, and four of her friends in their school gym
Naomi and her friends.

I don’t think I’ll ever truly understand my arthritis. But just because I won’t, doesn’t mean we can’t try together.

1)  Thanks for trying to learn, with or without me, about my disease.

It’s hard being the only one of us with juvenile arthritis (JA), but knowing you guys put effort into learning what I’m going through makes me feel less alone.

2)  Thanks for asking how my doctors’ appointments go.      

Whether it’s physiotherapy, occupational therapy, rheumatologist appointments, MRIs or even just good ol’ checkups, I can always count on you guys to ask how they went, whether there were any updates, and if there’s any good or bad news.

3)  Thanks for giving me the confidence to share my story.    

When I’m worried what people will think or scared that I’ll be looked at differently, you let me know I have nothing to worry about and I should be proud no matter what.

 4)  Thanks for explaining it to other people when I’ve been asked multiple times already that day — you might even get better at explaining it than I am!

I’m proud to say you guys have mastered explaining what JA is in simple terms.

5)  Thanks for reminding me to take my meds on those forgetful days and trying to pronounce/remember their names.

As many medications as I have to take, there are as many days I forget to take them. I don’t know what I’d do if it weren’t for you all being the little ribbon around my fingers reminding me to do so.

Thanks for recognizing when I’m having a bad day and knowing just how to make me feel better.                                  

When I’m struggling to put my jacket on, tie my shoelaces, chew my food, open a door, carry a backpack and walk, you never fail to make me laugh (uncontrollably sometimes), say something positive, or remind me how lucky I am.

Thanks for walking with me, no matter the speed, and stopping when I need breaks.                                                      

I can be slow sometimes, but as long as we’re slow together does it really matter?

8)  Thanks for getting excited with me when I’m having a good day!

No one really knows how huge and few those days are for me except for you guys, and there’s no one I‘d rather share them with.

Thanks for challenging me while still knowing my limits (pretty much not letting me become a couch potato).

On those good days, and even some not so good, you push me to move, within my possible range of motion, so I can still feel normal.

10)  But most importantly, thank you for being the most amazing support system one could ask for.

I never in a million years imagined I would be as lucky as I am right now to have you all there for me — no matter when, where and why. You have made me laugh at the best times, and have sat and listened to me at the hardest. I don’t know if you realize the important role you played and are still playing in my experience with juvenile arthritis, but I hope this helps you recognize the impact you’ve had on me.

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