Hey all. A rant and open discussion about explaining and getting friends to understand your disease. I posted about this on my blog but just felt the need to come over here and talk to those who would understand.
I tried to give most of my friends a brief 101 spill about what I’m going through. Tell them to not take it personally if I can’t make it out to something but I still try to make it out every now and again. I went with one friend to an event and experienced horrible sensory overload - everything was acting up on me (a whole list of warning symptoms letting me know if I didn’t do something it would get really bad really quick). I excused myself, and said I had to go. Later on I explained, in detail, to her later.
Another time, with the same person, I was out with her and another incident occurred that really provoked me. High emotions = really, really bad symptoms. I cut my time short at the event and left. She accused me of being a drama queen. Again, I went into detail about the names, symptoms, nature, and associated conditions that come with my chronic, invisible illnesses. She nodded, said she understood. But then proceeded to tell me why I was wrong for leaving the event abruptly, how I was being overly emotional, overdramatic, etc etc.
I told her: “If it comes down to me choosing my health over…whatever. My health will win. What’s best for my health will win every time.”
One week later…she emails a link to a sale from a life coach - a “self-love” course. I asked her what was her intention with this, if she were actually insinuating something and she didn’t respond.
Honestly, it’s making me hot under the collar because I put forth so much precious time and energy really going into detail with someone I thought was a friend and thought would listen but only saw/heard what she wanted to.
I’m one year into my fibro diagnosis, and diagnoses of my other conditions (all pretty much diagnosed at the same time). My chronic illness life is showing some of the true colors of people I thought I knew and it’s tough sometimes. I also have a hard time (still) not feeling guilty about saying no to certain events or having to leave because I suddenly don’t feel well.
I’m not sure what to make from her…“gesture”. I was very forthright with what I was going through. At least, I thought I was but I guess not…
How have your relationships changed since your diagnosis? Have you found that you’ve had to re-evaluate who you call “friend”? What actions by others caused you to distance yourself from them or cut them completely out of your life?