Pity and understanding
I got diagnosed last year in June and I’ve had a pretty rough time. The symptoms, the doctors appointments, the high heart rates, the anxiety and stress, keeping up with school, work.. cardiology appointments, blood work, panic attacks, spinal tap, kidney stones, 2 runs to the ER, car crash and I’ve been grieving the loss of both my grandparents.
No matter what I always tried to show myself at work well, make up done and big smile, even if I was feeling exhausted, scared and frustrated.
I disliked when people I was close and telling them I was having a hard time and really opening up, would say “you look great, I can see you’re doing so much better” “I’m glad you gained weight”…
It really sparks a fire inside me because they have no idea what does comments to do me.
Like I came to you without any armor and you seem to not understand that in suffering. You see me wearing makeup and you assume I’m “doing better” ..
Hello. I'm not great at expressing my thoughts in writing; however, I just read & totally agree with another MSer's thoughts shared in another thread on this site. I am very grateful for his clarity of thoughts. ❤️🩹 "MS is scary, no point pretending otherwise. But I think sometimes people hear “progressive disease” and imagine an automatic straight line downhill, and that just isn’t true for everyone. Humans age anyway, with or without MS. The goal is to slow the disease down as much as possible and protect the brain and body for the long haul. The good news is the drugs nowadays are seriously good compared to even 10 or 15 years ago. CD20 therapies like Kesimpta and Ocrevus hit hard and have changed the game for a lot of people. Then you stack that with diet, exercise, sleep, pacing and stress management and it all compounds together like armour plating. 🛡️ There are no guarantees with MS, I won’t sugar coat that. It can absolutely be a dog fight at times. But plenty of people live long active lives with it. You can still be 70, 80, even 90 moving well, training, travelling and living properly. And despite the fear around wheelchairs, statistically most people with MS will never permanently need one. The internet can make it seem like every story ends badly because people understandably post when things are hard. For me personally, the mindset is: Don’t just fear the dog fight… become the dog whisperer. Learn your body, pace smarter, use the science, keep moving forward and stack the odds in your favour every single year. 💪"
It all sucks. Even those that really want to empathize and support have no idea what it’s like to have something that only you can feel and know is happening. We can explain what it’s like in the best detail possible but until you’ve felt it you don’t really get it