Unseen illness & people’s recognition.

I truly have just realised its not about how visible a pain is, my epiphany today is that folk only understand the pain that they themselves have been through.
This is absolutely why invisible illnesses such as Fibromyalgia or Chronic Pain Syndrome are not accepted, even it seems by some ill trained professionals.
We are asked to describe our pain, but for me that’s like being asked to describe the shapes I see in smoke.
If I said a “velociraptor” but you had never seen one it would be meaningless.
I currently have just had the wrong tooth removed by my dentist and developed a rather painful abscess under the tooth he should have removed. Now on antibiotics for the pain.
The people who I have told about it are all genuinely sympathetic to my pain, but for most I believe it’s because they recognise the severity of tooth ache through personal experience or the experience of close friends and family. Its lovely to feel the support from these folk, truly, and most of these fabulous people I see as my family anyway, however, when I describe a fibro flare up, or the after effects of a hypo, or the embarrassing situation crohns can leave me in, or worse in some ways the destructive effects of anxiety, ptsd and depression have left upon my life, the loss not only for my brother, for my still born children, for my….er, self by losing career, identity and most of all my still living family, because its not something that they or many of you have experienced there is no point of reference for them. This not their fault, no competition, and sadly some of my issues they will have had to live through and vice versa. I am not saying my situation is any worse than theirs!
Maybe when we use a phrase to identify an illness not seen nor understood we should call it a “not yet experienced by you illness”. (I am sure there will be better suggestions).
These illnesses are not always (but all too often can be) fatal, and when they are the cause of death will likely be “misadventuture”, not “the only end to the suffering” or “an end to pain” or “a scream for help”. Maybe if they were seen as potentially fatal then its possible we would all offer support rather than seeing those fighting these illnesses as weak, it is possible we would recognise them as as strong, as the warriors they are, not as feeble (a phrase been bandied to me).
Does it really matter? Well yes it does. With so called “invisible illness” there is not just the illness itself to contend with. It maybe that you have to take stupid amounts of meds including pain killers, opiates just so people do not see you as “putting it on”. For me personally I constantly wear a pain patch, I take codeine, morphine, and paracetamol almost every day, I also have to take other poisons including very strong immune suppressants just to stop me soiling myself. My lack of concentration whether through illness, pain or medication inhibits me every single day, it’s akin to having dementia, as I forget things whether the cooker, a task or even what I am saying during a conversation.
I strive every single day to hide the pain, to ensure people do not see me as weak, or useless. I get angry, more at myself than others but that anger is destructive, because it feeds my interaction with people including those i love.
Not being able to get up some days nevermind leave the house, not just due to pain but anguish, fear, lack of motivation, and…..so many other reasons that cannot be voiced with mere words.
How do you explain this to folk that haven’t experienced it? Well you can’t.
If but it were a tooth ache, a head ache a broken bone people would get it, but non experienced illness whether with a physical or mental causation is not understood by so many.
I am sorry to babble on, but I do hope some who haven’t and I pray will never experience chronic invisible illness will read this and just think about those folk they know, those who have to live like this.

Sleep deprived

Here I lay in the dark with all so tightly closed eyes, yet inward I see such angry storm filled skies.

Gazing upon a raging purple sea, mountainous waves towering above the frail shadow of a marooned cast aside me.

The surging swirling currents dragging pulling deep down below, into the most hostile place I must go.

Balance or demon I can truly no longer decide, searching in the diminished light I long to again hide

In a transcendental turmoil my my mind continues to dwell, some truth in this version of a yet unseen hell

No armour to protect the feeble creature now present, all my undeclared sins being outed, I must repent

Wishing I held a host of weapons by my side, feeling sorrow that the child I once was had yet again died

Rams head decaying upon a gilded human frame, urging my past digressions to publicly goad me and defame

Longing soon this foul torment must finally end, tonight is the same, not even a divergent despair to descend

Asleep or awake the nightmare still haunts, all my pain and loss engulfs a mind with screaming taunts

Childhood innocence gave me some hope, but losing loved ones, role, ability, reason, makes it difficult to cope

Another futile sleepless night draws to conclusion, a wasted day to follow without any human inclusion

Wanting the man I once was to again reappear, but knowing deep down the cost of hope is too dear.