The loneliness doesn’t come from literally and physically alone, though we appreciate having “alone time”. However, there will always be long days alone with a flare up or if more severe, in the hospital by yourself. Then there’s the likelihood of frequent doctor appointments.
There’s no one who can ever quite understand what it’s like not knowing if you’ll be in pain when you will wake up or maintain a sense of positivity and hope each day. Now I realize everyone’s life is unique to every individual but the thing is that it’s unintentional isolation that binds us together in a way.
Doctor’s can’t explain many of our symptoms and conventional medicine offer little to no relief except more money out of pocket. Then there’s this compelling feeling of “no one will ever get it”. It’s frustrating especially accepting circumstances you cannot escape from. A little bit of me have grown comfortable or being misunderstood because I can easily retreat from the world and exist in a tolerable contentment. However, I still have responsibilities and some still have to go to work and make a living just to pay for medication or relief. We live in a hustling world in which being “lucky” enough to have someone who understands is worth the weight in gold.