The story of Kelli
My boys were young and in daycare when they both caught a stomach virus. They recovered, I caught it, and 20+ years later have never recovered. Gastroparesis is the paralysis of your stomach and prohibits an essential function in your body. There are some good days, but to be honest, those are dwindling.
If I am lucky, I feel well, like really well, about 2 days per week. The rest of my time is spent trying to deal with the physical pain felt from each swallow and bite of food or drink, or dealing with flares that last for weeks and result in ER visits and hospital stays. This is no way to live and has very unfortunate mental health ramifications in addition to the physical.
I do my best to pretend and act like I am feeling well, to my detriment, but in reality, this disease is causing a slow, agonizing death that nobody can truly understand. On the days that I can go to work, I dress up, put makeup on and do my best to look like I am well. As soon aa work is done for the day, I am home and in bes or on the couch. Not much of a life.
Only those with rare diseases with NO cure can fully understand the overall impact this has. What I wish, would be for more people to try to learn about these diseases and to empathize a bit more. So many have conditions that are not always apparent, and we all need to be a bit more understanding, loving, and supportive.