What is chronic illness like, it is always feeling under the weather. I never feel 100%, this is reality for me. Somedays I can hardly eat, others I feel like I am running on empty from the moment I open my eyes. I feel sick all of the time, there isn’t a day where I have no symptoms. I simply choose to not express myself, mostly this is due to the comfort of others. I wish to not share it with others as I hear the same thing time and time again, “isn’t there more to you then illness?” “Why are you talking about this again?” “I thought you would at least have something positive to say.”
Reality check – I battle my body daily, I take thirty plus pills, injectables, have hydration lines put in to deal with chronic dehydration, I drink boost more then I actually eat, and sometimes if I am lucky the pain meds I am on actually work. Reality is I am sick, I shouldn’t have to feel the need to change myself to be around people. Yet, the discomfort others express makes me uncomfortable and thus I feel the need to conform to normalcy which alludes me. It comforts others to see me acting “normal” and by normal I mean hiding my illness. And on days where I can not hide it, I hide myself away from others. Should they see how truly unwell I am, I fear they will leave.
When the subject is broached I feel nervous, and unsure. What will people say, what will they do when I am sick. I recall may times being in the hospital, and no one coming to see me, being alone, isolated for my safety. Yet, no visitors came through the door. I recall after my stroke one friend coming to visit me, and I felt like they cared. I have noticed those whom have been around illness and seen the turmoil it causes are the ones who truly see me for who I am. A women stuffed to the brim with glittery pills of life, an artist, a friend, a content creator, a dreamer. They do not just lump me into a single slot with everyone else who is sick. They see me, not the illusion of me. The real me, every facet. These people are rare, the ones who will show up with a yellow rose for you when you are locked away in the Cardiac ICU.
It is frustrating the level of medical of gaslighting I encounter. The countless arguments which ensue due to the lack of belief around the rare complex illnesses that are slowly wrecking my body. I have heard others with rare complex illness joke about putting on their tomb stones “I told you I was sick,” the amount of disbelief around rare, and invisible illness is baffling, does the gaslighting ever stop?! I would like to think someday doctors will listen to their patients instead of telling them they are not dealing with the hardships they are dealing with. Doctors telling a patient something is hearsay because there is no note from another doctor makes this even more infuriating. It seems as though being chronically ill with a rare diagnosis means battling not being believed for longer than we would like. There is something that comes up in my care and I am questioned as to how bad I am actually doing. If I am faking anything it is faking being ok, when I am surely far from ok.
I am frustrated today with the medical system and how the gaslighting seems to have ensued all over again. While I have hope for days to be better, today I feel tired, wore out and not believed. It is never a good feeling, to feel as though your invisible illness doesn’t exist. These toxic things doctors do add to the troubles we face instead of elevating some stress they are adding to it. Today I am tired, I appreciate you taking the time to read my thoughts and hope that today hope finds you in unexpected ways.