The last couple of weeks haven’t been too bad health wise. I’ve been lucky enough to be performing in a lovely play with some lovely people, and consequently have taken some time off work so had more rest than usual. Late nights though have impacted on the chronic fatigue, so I’m very sleepy!
Interestingly this week, I’ve apologised to someone else with chronic illness for mentioning my fatigue, made excuses for taking painkillers and promised to make an effort not to limp.
Impostor syndrome is defined as the phenomenon where you think you’re not actually as competent as other people think you are, and you consequently develop anxious feelings over everyone finding out that you are in fact a fraud and your whole world collapsing around you. Often referred to in a work context, particularly after a great achievement or success, I’ve noticed how often people with chronic illness exhibit impostor syndrome type behaviours.
We are told, often for years, that our symptoms are imaginary
The first time I read about PoTS was in the first Deliciously Ella book. When reading the book, I was aware I was hypermobile, but at that time it hadn’t really been taken seriously, I had been living with the symptoms of PoTS for half of my life and my health was not in a great place.
But, regardless of reading Ella’s story, I didn’t give a second thought to PoTS being responsible for many of my symptoms. She talked about being so ill, and I was OK, mostly. I hadn’t been in hospital with these symptoms for years and every time I had been, I had been sent home with a diagnosis of anxiety. I stopped going to the hospital, accepting my palpitations and lightheadedness as an everyday part of my life and managing to hide my blackouts from everyone else by spending a lot of time hiding in the accessible toilets at work.
It wasn’t until my optician noticed a breakdown in the white tissue of my eye that I was referred to a rheumatologist who referred me to a cardiologist who finally made the diagnosis of PoTS.
But of course, some people still think I’m making it up, including some medical professionals. My hip dysplasia had also been put down to my overactive imagination, with my seeing doctors for over a decade before anyone even considered doing an x-ray, which was followed by profuse apologies after the results showed just how deteriorated by hip socket had become.
But regardless of eventually receiving a diagnosis (I’m sending hopeful thoughts to everyone still fighting this battle that theirs comes soon), the build up of years and years of people telling you that you’re faking or imagining things has a profound effect on your perception of reality. So you start to wonder, even after the proof that the symptoms are real is written in your medical notes, whether you really are making it all up after all.
Everyone else with chronic illness seems so ill. You’re not as ill as they are. Maybe you are exaggerating. Maybe you are doing it for attention. Maybe the pain isn’t real. Maybe it is a painkiller addiction.
Even when the pain is so bad you can’t walk or the fatigue is so overwhelming you can’t move or everything is such an effort that all you can do is sit at home and cry, those feelings of doubt still resurface.
And of course there’s always someone who says you don’t seem that ill, which reinforces it all over again. When your illness is invisible, and there are no symptoms for people to see, it’s very easy for them to believe they are imaginary.
Because nobody ever sees you on your worst days.
Take care,
Donna
Self-care snippet
This week I have been writing a lot, particularly working on my current book, and I’ve also been writing a poem which expresses some of my thoughts around living with chronic illness and trying to explain it to people.
Writing is my key self-care ritual, whether it’s in my journal, here or my creative work.
Things I’ve seen, heard, read and talked about
Quanked! Listed in A Glossary of Words Used in the County of Wiltshire (1893), this sadly obsolete word means “overpowered by fatigue”. Let’s bring this one back. Next week. Today I’m quanked!
The AutistiX A unique rock band from London, UK, who have two band members with autism, Saul Zur-Szpiro (drums) and Jack Beaven-Duggan (electric guitar + backing vocals). They are joined by their talented mentor Jim Connelly (lead vocals), Jack's father John Duggan (electric guitar) and Saul's father Michael Zur-Szprio (harmonica). Very talented, they are proud to be musicians with autism. They showcase the potential of musicians with disabilities and the valuable contribution they have to make to society.
On my cancer journey, doing makeup has helped me feel like myself I love this story of finding refuge in make up to feel like yourself during a serious illness. Sunita’s strength shines through in this article and is a wonderful illustration of the power of self-care.
A slow day at home Another great example of self-care, this video features food, exercise and reading recommendations, among other things.
Marks & Spencer: Midget Gems change name after academic's campaign The story that Marks & Spencer have rebranded their sweets as Mini Gems after a campaign by Liverpool academic, Dr Erin Pritchard.
Tamworth girl 'excited' over first running blade prosthetic The story of Amelia Eldred, who had a leg amputated after being diagnosed with cancer and has been fitted for her first running blade.
British Sign Language to become recognised language in the UK The story that British Sign Language (BSL) is at last on course to become a recognised language, after the government backed a proposal by a Labour MP. The private member’s bill aims to improve accessibility for deaf people and promote equality for users of the language.
The Diagnosis – The Fizzy Sherbet Podcast This was an audio play which I reviewed for North West End which explores the experience of disabled people in a world which doesn’t want to listen to them. I particularly enjoyed the discussion about sweets at the beginning following the last edition of Sea Invisible and there are lots of self-care snippets in the Q&A following the play too.