Me, My Chronic Illness, and The Pandemic
As readers of this blog will know, I am disabled and live with chronic pain. The last number of months have been especially hard and have affected how much I’ve been able to be present in the blogosphere. So I thought I’d try to put pen to paper (so to speak) and talk to you all about my life as a chronically ill person. Apologies to those who are only here for my regular bookish content.
For reasons of privacy I don’t like to discuss the intimate particulars of my chronic illness so I will not be putting names to the diseases that have ravaged my body.
The Early Years
I was born with a disability.
My earliest memories are of me in hospital. I went through an inordinate number of surgeries during my earliest years; I lost count somewhere after fifty. But I still managed to have what I would call an incredibly happy and healthy childhood.
However, my whole adolescence and subsequent adulthood was destroyed by the onset of a chronic disease.
Living with Chronic Pain
I don’t know how to even begin to describe to you the amounts of pain my body has been put through. How there are times I lie here in an almost catatonic state with waves of searing pain knifing through my body.
Not every day is as bad as that. I go through periods of time where my pain flares, and through times where the pain is just a constant hum. This means I can’t actually remember what a day without physical pain feels like. What it must feel like to wake up refreshed in the morning. Even when I sleep, in my dreamworld, I feel my chronic pain so I can never escape it.
My life is a cocktail of drugs and pain meaning my days are spent in a haze (yes that’s where my blog title came from). Add to that the nausea, the vomiting, the brain fog, the constant fatigue, the decreased mobility, the restricted diet, the onset of secondary diseases caused by some of the treatments I had no choice but to go through. And the emotional turmoil. The onset of anxiety and panic attacks. The fear of what the future will bring as I get increasingly weaker and weaker.
So yes, I’ve been through countless treatments, associated surgeries etc… it’s been a long and bitterly tough road.
You see my disease is predominantly associated with XX reproductive health. I’m purely talking sex chromosomes here, and not gender. A person’s sex does not define their gender so please note that this disease is not limited to cisgender women as both transgender men and cisgender men, and non-binary persons can have this disease also. The point I wish to make is that the disease rarely presents in cisgender men.
We live in a patriarchal society. A society that has been crafted by men, and for men. What this means for medicine is that there is an inherent bias towards understanding how a body works in terms of a cisgender man. Therefore, diseases that do not affect cisgender men in the main get overlooked and are not studied as they should be.
So people like me with this disease don’t have new treatments coming to light every few years. The treatment now is almost exactly the same as it was twenty or thirty years ago.
Doctors often leaped to the idea of the hysterical woman when they saw me as a patient. I could tell you of countless instances where I was degraded by them. When I wasn’t believed. When my pain was belittled. They assumed I was faking it. That I was imagining it.
This is not a story unique to me. There are countless instances of this out there. Just search the #DisabilityTwitter hashtag for one.
In the end I got my diagnosis.
It took years.
But eventually the right tests and investigations were carried out and it was definitively shown that I have an incurable chronic disease.
The Emotional and Practical Impact of Chronic Illness on My Life
What this whole experience has meant for me is a loss of self. A loss of innocence. A loss of hope. I grieve for the person I never became. The person that I hope is out there living in some alternate version of my life; living the life I dreamed of and having the career I planned for.
I was forced by my disease to drop out of school as a teenager.
I lost friends through inconvenience of circumstance; it’s not easy staying friends with someone who is house bound and can’t do the typical fun teenage things. This is a pattern that has been repeated in my adulthood too.
I also lost friends through guilt. Their guilt. They were unable to see me live a life of chronic pain. They called me brave, inspirational. Said how they couldn’t do what I do. And then they stopped calling by. Stopped inviting me places. Stopped texting.
Able-bodied people tend to be very uncomfortable with the idea of a long term illness. When the saying ‘get well soon’ gets old and tiresome. Because there is no getting well. So many people can only tolerate you being sick for a finite time. After that they can’t deal. So it’s easier to cut the sick person from their life.
I did eventually manage to go to university in my twenties during that brief moment in time when my treatments helped me to live some semblance of the life I dreamed of. It is my proudest achievement. It was incredibly hard. I needed huge amounts of support from my family. I took a longer time to do my degree than the standard four years because of getting deathly ill at one stage. But I somehow graduated.
Since then my health has plummeted again. More friends have left my side as their lives moved on to pastures new. And I’ve turned to the online world for companionship. I transformed my once solitary pastime, my love of reading, into a way to feel connected to other people. I joined Goodreads, Twitter, I created this blog… it’s been a life line.
Being Chronically Ill in a Pandemic
My current health is very poor. It’s been free falling for the last 18 months in particular which has meant I’ve not been as active in the blogosphere as I’d like to have been.
And then there’s COVID-19. It has added to my feelings of isolation and anxiety. And especially because I’m sick. I’ve been extra vulnerable to all manner of infections all of my life so I have had to self-isolate (not that I have much energy to actually leave my home). But I’ve had to take extra-precautions re simple things like getting groceries and medications delivered; I’ve not been in a supermarket since February 2020. And many of my medical appointments have had to be cancelled because of lockdown restrictions. However I’m lucky that I can isolate. That because my chronic illness means that I am unable to work, it also means that I can control my risk of exposure more than fellow #spoonies who still have to work.
But now there is hope. We have vaccines. I know there are contentious issues surrounding the supply of vaccines and the ingredients to make the vaccines e.g. larger countries keeping stockpiles with issues of vaccine nationalisation rife…
Wealthy western countries need to stop hoarding and vaccine patents need to be removed. And vaccination needs to be thought of on a global scale and not a national one as until the whole population is vaccinated the virus causing COVID-19 will continue to mutate, to kill, to cause life long illnesses. We need to first focus vaccination on front line workers and on elderly / medically vulnerable in all parts of the world. Vaccination has to be a global community effort.
So where I live it’s now time for the medically vulnerable to be vaccinated.
But here’s the punch line…
I’m not considered medically vulnerable and am not eligible for a COVID-19 vaccine until my age category.
Remember what I said earlier about living in a patriarchal society? My disease is under-researched because it’s not typically a cisgendered man’s disease. It doesn’t bring in the big bucks research-wise and all of these things mean that, despite its presentation, it is not yet classed as auto-immune. So even though I have regulatory T Cell dysfunction and the leukocytes produced in my body perform in an abnormal manner it’s apparently not enough.
But not the right kind of sick.
Because of bureaucracy and admin I don’t fit the extremely narrow definition of medically vulnerable. In other countries I do. But not here.
I’m chronically ill.
But not the right kind of chronically ill.
I’ve made my case to the powers that be but no one cares. Because when you’re long term chronically ill you get forgotten about. No one bats for you. No doctor truly takes command of your treatment. No doctor takes responsibility for your medical care even though they’ve all pledged an oath to perform said duty of care. But instead you’re treated by many, and they each pass the buck.
So I’m not medically vulnerable. How dare I even ask to be considered for an early vaccine? The audacity of me really.
What This All Means for Right Now
And now… Well now I feel like an imposter.
There’s this cloud of shame clinging to me. I know when reading books about disabled persons I scream ‘don’t make their identity all about their disability! They have other aspects to their lives’…
Yet now I feel like my whole identity has somehow been stolen from me, or, worse still, was entirely fraudulent. To anyone who knows me, either here online or in the offline world, I’m the sick girl. It’s the only thing I feel sure of in my life. It’s who I’ve become because it’s who I had to become. But now that’s somehow been called into question. Because I’m not sick enough? Or the right kind of sick?
I feel like I’m fifteen years old again. Fifteen years old when I had both doctors and people close to me doubting that I was truly sick, and just assuming I was either imagining it all or attention seeking.
And yes, I know my illness is very real. It’s been proven. I know how it manifests; I have the scars both physically and emotionally. I know that it makes me more vulnerable to infection; I’ve got the history and the bloodwork to show for it.
But that inner voice of mine, the same one that began to believe everyone’s doubts and questioned my own sanity all those years ago… well that voice is back. And I have to go through all that trauma again. I have to face all those ugly demons and somehow restore my balance.
I wouldn’t wish being chronically ill on anyone. Not only have I to deal with constant chronic pain, daily nausea and vomiting, but I also have to deal with doctors who neither have empathy nor compassion for their patients. Instead they treat the long term chronically ill with nothing short of disdain. My life is in the hands of doctors that became doctors for all the wrong reasons.
So please remember when you hear that all the medically vulnerable have been vaccinated that it’s not the whole truth. There are people like me out there who slip through the bureaucratic cracks in the system. People like me who have to stay isolating for a lot longer than they should have had to. People for whom the risk of infection is still catastrophic.