Something that keeps sticking in my mind lately is this idea of Acceptance in the stages of grief. I think that when you are chronically ill, you end up spending months, if not years, cycling through the stages of grief. We Deny. We feel Pain—both chronic, and emotional. We feel Guilt for all the things we can no longer do. We Anger at our mounting disabilities, and we Bargain. Depression that existed before, becomes infinitely worse. Anxiety or occasional Depression becomes something more permanent, that twines itself into your mental and emotional state within this vacuum of lost time.
We Reflect. On the past, all that we have lost, the limitations placed upon our futures. Chronic illness makes philosophers of us all. And in all this reflection many of us find that we gain new insight into what it means to live, only for this enlightenment to deepen our feelings of Despair and Loneliness.
Acceptance can be elusive.
Often, just as you settle into your new normal, some unforeseen event upsets the balance you managed to create out of chaos. We spend days endlessly trying. The illness is trying. The uninformed world made up of doctors, carers, spectators, friends and family, can be really trying. Trying to navigate life with a chronic illness is no easy task in a society that wants us whole, or dying, without much room for anything in between. I always think of “The Beach” when they move their dying friend out of camp, so they don’t have to bare witness to his pain and suffering. In doing so, they relieve themselves of the burden of a prolonged state of grief. Nice for those who are healthy and able to lean out and turn their heads away from suffering.
Betrayal writ large for those of us who do not have this luxury.
This is where I have a problem with the idea of Acceptance. I can accept that my health is what it is now, and I understand why my most of my friends have moved me out of their mental village. It’s difficult for me to live with my failing health, and when you don’t know what to say, I can see how it just becomes easier to say nothing at all. What I find Unacceptable is how much support my family, my own blood, have happily accepted from me over the years, and can’t even be bothered to read up my illness as one of my friends did of her own accord. I don’t need anyone to get the words right to show up for me, it can be as simple as showing willing.
Trying to support someone is supporting someone.
The other thing that makes Acceptance of my new normal difficult, is that I have yet to get any formal diagnosis. In mid January it will be 6 months since my first trip to hospital. Where my trust that I can rely on doctors to support my health was thin before, it is now almost non existent. Considering all of the many doctors I saw while in hospital, failed to recognise that I was suffering from medication induced hyperthyroidism, so that the thyroxine they sent me home with only made me worse so that I eventually broke out in angry hives one morning after taking it.
I still have some way to go in finding out what is wrong with me, but while I still have the bandwidth to advocate for myself, I will continue to search for answers. Because I cannot Accept having no diagnosis, and no direction. The only light at the end of that particular tunnel is surely a diminishing one. I shouldn’t have to Accept fighting for my health alone, but I will shoulder it in the face of having no other choice, which I guess is a grudging kind of acceptance.
I will keep surviving and I will keep trying for as long as I am able to do so. And in the event that I succeed in recovering some of my health, I will be prearmed with the knowledge of how “happy” people will be for me; some may even describe me as being “brave” as if that means something. And I know I can count on at least one person to tell me how well I looked while I spent this time stuck on the platform between the realms of the able and the disabled. Some people just can’t help themselves, and fail to see how this presents as the most backhanded compliment you can pay to any person who has experienced long term physical disability.
It’s all very trying… but I guess that’s why it’s called grief.
#Grief #StagesOfGrief #MyCondition #MyalgicEncephalomyelitis #ChronicIllness #ChronicFatigue #Hyperthyroidism #Depression #Loneliness #MightyTogether #InvisibleIllness #InvisibleDisability
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