How do you cope?
Hello! I (25) have been recently diagnosed with EDS after years of chronic pain and begging a medical professional to listen to me. I finally found a doctor that specializes in EDS/HSD and she said she was certain I have EDS.
This is all brand new to me and my biggest question is how do you cope? I can’t stop thinking about the future when I can quite literally feel my body falling apart. I feel so lost and alone in what I’m going through.
Did you feel any sort of embarrassment or shame when considering using mobility aids? I will need to get a cane in a few weeks and the thought of that is so emotional for me. I’m having a really hard time with all of this mentally and the possibility of needing to use mobility aids at my wedding in December 2027 is terrifying.
I think I’m really scared of everything that could happen to me because of EDS. What hit me the hardest is when my doctor looked me in the eyes and apologized to me for having EDS.
Any suggestions/tips are really appreciated.
Thank you and stay safe.