Advice to a young girl

“So recently, a friend contacted me that a child she knew was diagnosed with psoriatic arthritis – heartbreaking. Given that I have two children (now young adults) who were diagnosed with autoimmune disorders at a young age, she asked if I had any advice.”

So, one of my mom’s friend’s kids was just diagnosed. Everything in my mom’s post is perfect, including yoga being hell and going through the stages of grief and it never, ever going away…. There are good days, but it changes your life, and even more, it changes who you are. I have some advice on top of what my mom has posted:

  • Have a rest day- mine is Saturday or Sunday. I don’t leave  the house. I sleep for a crazy long time. This is important, especially if you have a very active week behind you or ahead of you.
  • Pay attention during doctor visits! You’re gonna grow up and need to know your medical history, what tests are done and why, and what medications do what. PAY. ATTENTION.
  • Keep a medical history typed and saved in various places (USB, email, cloud thingy). Keep it updated.
  • Keep a list of medications and dosages in your phone, to reference during doctor visits. I just took a photo of my bottles and put it in a special photo album folder.
  • Do not underestimate the value of an hour-long (or more) bath. For reals.
  • Talk to someone who has what you have, and can share and appreciate your experiences. I didn’t do this until college, and I wish I had done this earlier. Whether it’s an online penpal or someone you meet in your doctor’s office, this helps… You’re not alone.
  • Be up front with your teachers/professors. Don’t be in denial and try to be “normal”, then crack halfway through the semester. This looks super sketchy. Tell them you need accommodations in the beginning, sign up for them with the disability office (or whatever it’s called where you are), and set yourself up for success.
  • Best accommodation: typing instead of writing. My hands, finger joints, get all loosey goosey when I’m flared up, and my wrists hurt even when I’m not flared up. I cannot write multiple essay questions or notes during class. The easiest and most effective disability accommodation was being allowed a laptop in all classes for note-taking, and going to the disability office to type tests on a computer (which had the internet disabled… grrr) (jk jk guys, academic dishonesty is not cool).

You won’t always do everything perfectly. You’ll get mad and try to ignore your needs in the quest to “be normal” (pro-tip: everyone is doing this. everyone.). You’ll over exert yourself, get sick, stay up too late, get sick, won’t take your meds, get sick… You get it. What’s important is to know yourself, and know what the consequences of your actions will be so you can weigh your decisions. Should I have stayed up all night? No. BUT I just HAD to finish the third season of Orange is the New Black, and that was worth being a zombie and hurting and having to sleep 10 hours the next night (hey, everyone values their pain differently, don’t judge). When I wanted to drive to Texas with a friend… in winter… in one pull… I knew it wasn’t smart, but I wasn’t going to let that stop me! I packed so many meds my purse sounded like I was carrying some macarenas, and I slept for 12 hours before the drive. Know yourself, know your body, and know how to manage your symptoms so that you can live your life.

Before lupus, I was going to write children’s books and play soccer professionally. Now, I’m going to be a teacher, and I love my life. Your life will change, but that doesn’t mean it can’t still be awesome.

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