Nice to meet you all
Hey, I’m new here.
I’ve been diagnosed when I was 16. Loss of sensitivity on the left part of the body. Then my eyes and recently tiredness.
I’m struggling with people around me not understanding me, I know they can’t but they make me feel like I’m complaining about something that doesn’t exist or making up excuses not to do things.
And I don’t know, I felt like I needed to talk to someone who could understand me not to start feeling crazy
When symptoms flare I feel like the biggest hypochondriac! I find coaching those that are unhelpful that I want to share with helps me. Some people stink at active listening and want to solve your problems. Google “what not to say to someone with an autoimmune disorder”. I can’t stand dismissive positivity or unhelpful advice like “keep your chin up” or “hang in there” or “did you try changing what you eat?” They can fix us, but they can be there for us. I had a cognitive blip where I saw the road sign and for the life of me I couldn’t recall if that is where I should turn left. It was crazy frightening to have a cognitive loss when driving. The husband said / sure you’re not overthinking? I was crushed and felt so invalidated and like he just doesn’t get that I share because I was upset and sought comfort. It’s not his job though to manage my emotions, but from time to time my “person” says some of the crummiest stuff in response to my symptom share! I think that’s why this group is good for us. I have a few friends now that have MS and I love to share with them as they just listen! I find those that share my diagnosis can be some of the best listeners! (Virtual hugs)))
Welcome. Unfortunately, all MS patients have this condition. Unfortunately, we need to address all of humanity.