Don’t let this illness define you, it’s something that will change everything but it’s not everything that you are, don’t give it more power than it deserves.

I was really struggling when getting diagnosed, I was working in a sedentary job in front of the computer all day and I couldn’t handle it. I was so fatigued and in so much pain and then on top of everything a doctor told me I really had to think about what career to consider in my future (I was really young) because I was likely never going to be able to do any work that was not sedentary in front of the computer. I was filled with dread because this was exactly what I already was doing and it was so not working for me and my body, and I had plans on going to college and perusing med school. I ended up talking with a different doctor about this and my fear about the future because work at that time was not going great - even though it sounded like everything the other doctor had recommended. The new doctor told me he was not so convinced a sedentary work life was the best thing for me. He continued to tell me that he wished everyone could have a job like his because he spent about 70 % on his feet and 30 % in front of a computer in very short sessions, I had not shared my intentions on becoming a doctor so he just told me this out of the blue. Anyway, fast forward many, many years later - I’m currently working as a full time physician and he was a completely correct about the continuous low energy movement throughout the day - it’s essential to keep my body in a semi-workable shape. If I have a day or two with more administrative duties (same with lying in bed over a long weekend unfortunately :( ) I pay for it immediately. So that’s what I wish someone had told me: you can still do whatever you want to do but not in the way you would have wanted to do it. Keep moving.

My mom, who has a separate and honestly, more severe chronic illness, told me, quite early on: ”You’ll get used to it”. She said it in a comforting and loving way but I was devastated by the comment and cried for months (or so it felt like) because I didn’t want to get used to it. In hindsight: she was correct and it’s the most comforting thing someone has ever told me.