As I’ve been dealing with this terrible situation with my rheumatologist, I’ve been thinking a lot about the things we deal with in having chronic illness: the constant changes in our health status, the difficulties in finding appropriate care, the daily pain, the trauma related to our illnesses as well as things that have happened to us within the medical system. . .
It can be overwhelming.
(So unpredictable is my health that, as I’ve been trying to write this, I’ve suddenly found myself so exhausted that I’ve just been having to sleep and sleep, with no warning that this was coming or apparent reason. I’ve just been too fatigued to function and my body quit. Ugh.)
In thinking about the struggles of other spoonies and healthcare related trauma, I would also like to share a blog post I came across from someone else who has dealt with terrible suffering in the medical system.
Sadly, this is not uncommon for spoonies – and makes us much less likely to seek help, even when we desperately need it.
Still, as I have found myself in an awful situation recently, I absolutely had to begin the process of finding a new primary care physician in order to address all of the other care issues I’m experiencing. I made an appointment at a local office where I know the physician from years ago and his nurse practitioner had an availability this week – and, oh my word, did I ever not want to go. . . Still, our daughter basically pushed me out the door and off I went. . .
When I got there, my anxieties were at an ungodly level. My heart rate was well beyond the normal range and I was pouring buckets of sweat. I was nervous wreak.
Medical PTSD is real and it is not anything nice to deal with.
BUT. . . when my new PCP came in. . .
She introduced herself and sat down across from me. She listened, really listened to me. She never talked at me or over me. She made thoughtful suggestions and changes. She was so easy to communicate with. She was really gentle during her exam (you would be shocked at how many physicians are not despite knowing they are dealing with a patient with autoimmune joints!).
Additionally, my labs – which sucked out loud (no surprises there) – were called to me at 10 AM the next morning, along with instructions as to what her next steps were to do about them.
I could not believe it.
Of course I still need the same specialist care I always do – rheumatology, neurology, ortho, etc. . . – but I am so grateful to have found a comforting “home base” as it were, especially with the sheer hell these past weeks have been in dealing with my rheumy. I’m just thankful for a bit of relief.
Be well, everybody. Take care of yourselves and each other.
Grace and Blessings.