What 20 Years of RA Have Taught Me
I recently had my 20th RAnniversary, having now lived two decades with a diagnosis of rheumatoid arthritis/rheumatoid disease. A reader reached out and shared that she is 22 years old, the age I was when I was diagnosed, and she is struggling with her recent diagnosis and symptoms.
Stating she needed some hope, she asked me what I would have told myself back then in 2000. These are the words I offered to her, by way of my 22-year old self.
You're more powerful than you know
This sucks. It’s scary and painful and hard, and you are more powerful and courageous than you know. The strange thing about courage is that you won’t feel courageous when you’re being courageous; you will feel scared and worried and sad and beat down and so very hurt. The courage is that you keep going in spite of all those feelings, and you won’t be able to see that until you make it to the other side of really hard phases.
And it will not all be hard phases. There are lots of hard times, and there are so many beautiful moments of joy, love, and connection too. Life is a complicated miracle with the most amazing aspects interconnected with the most awful, all of it tied up together. The awful is really hard. The amazing is so good, it makes it worth it.
Embrace the hard and the amazing
You will have a full life, and the more you can let go of what your life “should” look like, the more space for the amazing you will make. Wishing things were different is so very seductive, and you will do plenty of that and that is okay, but you shut out a little bit of truth every time you do. Things are not different; they are this, and there may be some amazing parts you’ll miss when your eyes are squeezed tight with the wishing.
Feel the hard and know it’s hard; wrap yourself up in hugging yourself in the midst of the hard. And instead of wishing it weren’t hard, know that everything changes and nothing stays exactly the same. The hard times are really hard. And the amazing will be there too. Instead of wishing away the hard, hug yourself through it and open your eyes to the amazing as often as you can. It’s all there, all mixed in, but the hard can be so smoggy that we can’t see the amazing. Try to see them both.
Love your body for trying and surviving
LOVE yourself. Love yourself with everything you have. Do not be angry at your body. It is not your enemy; it is you. You may feel mad at it for betraying you, but your immune system has not turned its back on you. It is working the very hardest it can, and the poor thing is confused and doesn’t realize it is making things worse when it tries to make things better. Scoop it up on your lap and rock it, lovingly saying, “Shhhhhhhh, that’s enough now. It’s time for a rest.”
Love your body for trying so hard and love it for surviving. Love it for allowing you to do any of the small things that bring you joy. Any talking, walking, holding, touching, seeing, hearing, tasting that brings you joy, that is your body doing that for you, even when it hurts. Do not see it as your enemy. See your body as your dearest friend going through a really tough time.
Prioritize your wellness and peace of mind
Make it your mission to love yourself in a deep, true way, and practice loving yourself by eating good foods when you can; drinking lots of water every day; meditating every single day for just three minutes (in 2020, there will inventions called apps for that), as it will make a bigger difference than you can imagine; doing the work to make space for sleep and trying whatever healthy thing you can to help you sleep; moving your body (even when doing so hurts but is manageable pain); and resting without judgment.
Listen deeply to your body to know when it needs to move so that it can be strong and to know when it needs to rest, and then honor that. Make time for books, podcasts, and any wise humans that help you learn on this journey of living. The path is hard, and there are many guides when you look for them.
Close your eyes, take a deep breath, hug yourself, and know that the hardest days will strengthen you like steel in a forge and the best days will make you absolutely marvel at the miracle that life is in the midst of all the pain.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?