There is a loneliness that comes with living in pain all day every day.
It doesn’t matter how loving and supportive your family is, how amazing your doctors are, or even how strong you are, eventually, at some point, you will settle in for another battle against your invisible enemy and it will ultimately be up to you to fight it.
I am here in my cozy space. It has been built over the years to be as reassuring, comfortable, and loving a space as can be. We decorated it with intention, put in conveniences like an ice machine, a massage chair, and a freezer so I have ready access to the tools I need for self-care on my worst days.
My new cat is on my lap. Both dogs are at my feet. My husband is asleep at my side, his hand on my arm in loving support, unable to leave me without his touch even in sleep.
Yet I am feeling that isolation that comes from the approaching storm front, the impending doom of the mounting head and face pain. The knowledge that all the love being aimed at me is coming from the outside and I have to, yet again, dig deep and find the strength to get through another episode.
I am feeling the loneliness that comes from knowing all the support in the world can’t give me more energy, more inner strength. That all the supporters who love me don’t know what this really feels like, that my experience is isolated to me.
Hell, even the diagnostic criteria for my syndromes say “each patient experiences these symptoms differently.”
There is no camaraderie to be found fighting invisible battles on battlefields that occur inside yourself. There are no great songs written about our internal wars.
There is only the moment we each face, over and over, as we let go of the loving hands trying their best to help us, and turn to our internal struggle yet again.
I am not alone, but at times, this battle is a lonely one.