It’s okay to grieve. #ChronicPain #MultipleEpiphysealDysplasia #grieving #Osteoarthritis #RareDisease #Acceptance
I’m sorry to rant, but I feel like I need to get some things off my chest. I know this isn’t exactly an encouraging message- but for many of us…. it’s relatable.
The price of independence is steep. I grieve because I am not who I used to be. I miss the person I used to be before these diseases took over. The physical pain is not what grieves me, it’s all of the emotions that come with accepting the fact that I now have limitations. I long to be able to do the things I used to. I feel like I have been robbed of my independence, self worth, hobbies, and my freedom. I miss being able to do things without being afraid of the consequences. I realize that I don’t look sick, and for that I am grateful. I am not seeking attention. I don’t want to burden my loved ones, but sometimes fighting this battle can be desperately lonely. I am constantly torn between “I can’t let this disease determine my quality of life” and “I must accept the defeat and rest”. I barely remember what it was like to be healthy, it all seems like a distant memory. I grieve what my life could have been. I always wanted to be mother. I grieve the children that I will never be able to carry. I grieve because the reality is that there is currently no cure, and I am only getting worse. I grieve because there is a large possibility that I will never be able to live without pain. The uncertainty within all of the “unknowns” of my life haunts me. I’m not depressed, I am grieving. There is a huge difference, and it is normal. Most days I’m able to hide the fact that I’m devastated by this illness, but today is not one of those days.