Hands up all those autistic people who have a chronic illness?
Making an educated guess based on time spent on fibromyalgia and chronic illness Facebook groups, I’d say that a lot (if not most) of us do.
This doesn’t come as much of a surprise to me because conditions such as fibromyalgia, CFS (chronic fatigue syndrome, M.E) etc are generally triggered by stress and I don’t know of any ‘highly functioning’ (sarcastic tone) autistic person who doesn’t have at least one mental health condition..
Having existed as an undiagnosed autistic human up to the age of 46, it’s understandable that the amount of stress my body has been subjected to over four decades has taken it’s toll and the result is that I have fibromyalgia which a very painful and life-affecting condition.
You know what one of the worst things is?
It’s that people don’t believe I’m ill.
Just like people don’t believe I’m autistic.
This is because people make judgements on what they can see based on what they know, or don’t know.
I am a wife and a mother and I’ve held jobs down – therefore I can’t possibly be autistic.
Almost every medical test has come back clear. There is no visible cause of my pain and unless I’m wearing make-up – I don’t look ill.
The autism thing? I was so very relieved to finally have an explanation as to why I struggle to do ‘life’ and why I’ve never fitted in, but then came the ignorant neurotypical crap and so called ‘friends’ (and a family member) deleting me from their lives because suddenly I wasn’t good enough. The fact that I was born autistic and have been autistic all my life is lost on them..
It hurt, but then I realised that I don’t want such toxic people in my life anyway and so I thank them for removing themselves from my life.
Three years later, and after 8 years of symptoms with no idea what was wrong with me, I was diagnosed with fibromyalgia and anybody who has this condition will know that there are people, including some so called professionals, who do not accept it as a condition.
Fibromyalgia, also known as fibromyalgia syndrome (FMS) symptoms are very similar to MS (multiple sclerosis) symptoms, which is why a lot of people are misdiagnosed’ but the difference is that MS shows up on imaging whereas fibromyalgia does not. The diagnosis is one of exclusion and if you’re lucky you’ll be seen by somebody who has understanding of the condition.
I was lucky. I was seen by a rheumatology consultant who believes that the condition is caused by a problem in the hypothalamus. There are a few different theories but this one makes sense to me because of how stress affects the hypothalamus and it’s role in the human body. Before I was diagnosed (and before the hypothalamus was even mentioned) I told my GP that it feels like something in my brain is ‘stuck’ and that my body is constantly releasing stress hormones, even when I’m asleep.
Just because the powers that be can’t agree on what’s causing the condition, this doesn’t mean that the condition doesn’t exist or that it’s all in the mind. I can assure you, it’s not all in the mind. The pain is real and pain can be measured – which is why a lot of us have blood pressure issues because pain raises BP.
Some of the comments I’ve seen on social media highlight the ignorance of this condition with people telling us to ‘stop moaning and do some exercise’.
Yeah, if only it were that simple, mate!
Nine years ago, I was active – a grafter. I had an appetite. I rarely needed painkillers. Now, I am in pain all of the time and that pain generally cannot be managed because of sensitivity to medications. I haven’t had a decent or restful night’s sleep in 9 years. I have nightmares. I wake up numerous times a night with my body flooded with stress hormones. I have migraines which last for days at a time, IBS, arthritis, tachycardia, osteopenia, disc disease, chronic constipation, pelvic floor disorder, neuralgia, anxiety, depression, premature menopause, atrophy (inside and out), bone pain, muscle pain, itching, nausea, headaches, twitches, brain fog, tinnitus, dizziness, food and medication sensitivity/ allergies and the list is endless..
There isn’t one part of my body that works properly, not one.
Some symptoms overlap, others are due to the natural wear and tear that comes to us all with age – the difference being that my body is hypersensitive and I experience a lot of pain whereas healthy people experience little or none at all.
I wake up some days and feel that I cannot take another day of pain and I never know from one day to the next how much pain I will be in or what part (s) of my body will be inflamed. I cry and feel nothing but despair, then I pull myself up by my pants and carry on because I have people who need me, even if it’s me at my Z game.
One of my biggest problems is that people just don’t take chronic illness seriously – especially invisible conditions like mine, but the reality is this:
Patients with chronic pain are twice as likely to take their own life.
Physically – chronic pain is debilitating.
Psychologically – it’s soul destroying.
As if life isn’t enough of a shit-storm, there are people around us who show their ignorance, instead of their support.
When somebody tells me that It’s ‘all in my head’, I visualise murdering them with what little strength I have left!
When people tell me that ‘I’ll fine once I get out of the house’, I like to imagine them sat on the toilet having the horror of all shits because they’ve resorted to constipation inducing codeine having reached the conclusion that they cannot take ONE MORE SECOND OF PAIN!!
But then I remind myself that, actually, it doesn’t matter what these people think and I refuse to spend another second (after I’ve written this post, obvs) in stressing over their ignorance because, at the end of the day, I have a letter with an NHS stamp on it that says Diagnosis: Fibromyalgia.
Decades of suppression, fear, anxiety and the traumatic loss of my mother led me into chronic illness.
People can accept my autism and my illness, or not, but I will lose no more time over their ignorance.
The highest form of ignorance is when you reject something you don’t know anything about.