This is an open letter to my friends and family, the people who love me and who I love. I know you are struggling with my diagnosis (so am I), struggling with feelings of helplessness (so am I) and wish with all of your hearts that there were something you could do/say/research that would make me all better (so do I). I understand that it is extremely difficult to wrap your head around the fact that I will never be the same again, that the life I lived before is gone (I still struggle with this every single day). I can understand how when you see me I don’t look that different, maybe a little tired, but I don’t look sick, so maybe I am not that bad (I wish the cost wasn’t so high, that my system didn’t require days of recovery at home shivering in pain in exchange for a couple of hours of being out in the world “looking/acting normal”). I know you are excited to share this new diet/medicine/treatment program with me because you love me and just want me to be better (I sincerely want that too and have read (and tried) the diet books on autoimmune disease, gluten free diet, Whole 30 diet, etc. right now I am trying to live by the advice of my rheumatologist, gastrointestinal doctor, neurologist, cardiologist, ear/nose and throat doctor, acupuncturist and assorted other professionals I see).
Many days it feels like all I can do is to keep my head above water, I don’t/can’t eat much, try to exercise, but when I do, I usually make myself sick, I have really weird sleep patterns and rarely sleep through the night. The question that kills me, more than any other “When do you think you will go into remission?” or “Do you think you are in remission?” I don’t know, I can’t know, I wish I did. I just know I am not now. It is a long, long, long road. I know you just want to find the “magic” bullet (so do I) but I don’t think it exists.
What I do need and miss, is someone to hang out with me. Someone to talk to me (which this is fairly huge for me because I such a committed introvert, but heh, even I miss people a little). Let’s go to the movie, or better yet come over and watch a movie with me (I know I am not much fun, but I do have an off color sense of humor, that is worth something, right?). I also have a HUGE array of craft materials, pretty much all of which sit in their neatly organized boxes because I don’t feel like using them, but maybe we could do something low key, like paint a bowl or eat popcorn out of a bowl. Tell me what is going on in your life, what is going on at work (the interesting stuff like who’s kid did what, who’s having a baby, but not how horrible educational funding is in Oklahoma, I already get that) tell me about your life, about anything. If you want to make something, I might not feel like doing it myself, but I can probably walk you through the process, I can make about anything!
I know this entire situation is deeply frustrating for the people who love me, but what I need most is for you to accept me as I am. I still struggle everyday and when I have to spend so much energy reassuring you or trying not to argue with you about my diet/sleeping habits/exercise, it saps what little energy I have. Just accept me and be with me. I completely and utterly wish my life were different, it isn’t. I am trying REALLY hard not to rail against that, I can’t absorb the angst of the people I love too.