Reading through the free-form responses to our Women’s Heath Survey has been a heartbreaking task. The stories from women throughout England were both shocking, but unsurprising in equal measure. Shocking because of the difficulties in getting a diagnosis, (and these were about pre-pandemic experiences) either because of a GP refusing to take symptoms seriously or because of a lack of suitable specialist clinics. Unsurprising, because these are stories I hear daily from my friends and colleagues in CII. Why do women with chronic pain in Suffolk not have accesses to the same services as women in London? Why can you get a diagnosis as an adult for EDS if you live in one county, but not if you live in the next-door county?
We received 1,871 responses that covered 6 different aspects of the difficulties that women with chronic illnesses face. The overall theme was that of medical ableism, a failure to understand our conditions or listen to our experiences.
These quotes are the voices of those women, they deserve to be heard.
Being disbelieved seems to be a rite of passage for so many women with chronic illness and/or chronic pain. These are just a few of the responses that were given to our question about the impact of being disbelieved;
“Being disbelieved makes you question everything you know about yourself and your conditions and leads into a dystopia which undermines everything in your life.”
“I have developed anxiety about being believed & taken seriously especially with professionals, I struggle with a sense that I am seen as worthless by society in general. I have become apologetic and unassertive.”
Disbelief has a very negative impact on psychological well being;
“I used to be extremely independent and I’m finding my self-esteem has gone down a lot since I’ve needed help. There are such a huge amount of physical obstacles in the way when you have to use a mobility scooter or a wheelchair, it makes you feel that society doesn’t want you around and sometimes it makes you feel like you don’t want to be around.”
Self-blame is also common;
“It took a long time and a lot of heartache to get my head around the fact that my life didn’t look like I thought it would, and the fact that I was constantly being gaslighted by medical professionals and especially the DWP meant that I did and still do struggle with the idea that this illness is somehow my fault.”
Our Director Catherine Hale and Dr Anna Ruddock recently took part in an event organised by the School of Health Sciences at City, University of London.
In this seminar they share findings from the Chronic Illness Inclusion Project. Set up in 2017 this was a user-led research action project aiming to give a voice to those with an invisible disability. Fatigue and limited energy were found to be the most common restricting factors for those with a variety of chronic illnesses, but were not often recognised as impairments and were often treated dismissively.
Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.
I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.
Leonora Gunn discusses society’s role in improving the lives of the chronically ill.
The big idea of the social model is to distinguish between ‘impairment’ and ‘disability’: ‘impairment’ is someone’s condition, ME (myalgic encephalomyelitis, or ‘chronic fatigue syndrome’) in my case, whereas ‘disability’ describes the way that impaired people are oppressed and excluded from society on top of their impairments. This challenges the assumption that disabled people need to be ‘fixed’ or changed to fit in to society, and suggests that society needs to be changed to include everyone.
This might seem like a funny thing for someone like me, with a chronic illness, to believe. Surely illnesses, like ME, need ‘fixing’? And how can it be society’s fault that I am ill?
Patricia de Wolfe is tired of saying ‘sorry’ on account of her energy-limiting illness.
I’m sorry. I’m really sorry.
Sorry I can’t make it to your birthday party, your family gathering, your funeral. Sorry, no, I can’t come over for tea on Friday. Why? No, I’m not doing anything else. But I’m going out for lunch the Tuesday before. Yes, I know that gives me Wednesday and Thursday to recover but Friday would still be pushing it. And tea is a bit late in the day for me. Yes, I am sure. Perhaps we could meet next week? Yes, I know I cancelled last time. Yes, of course I understand you’re very busy… Sorry.
I want to stop apologising. I want to stop explaining. For me, inclusion would mean, at the very least, living in a society in which it is generally accepted that some people are ill. Chronically. Perhaps permanently. And in which we are not regarded as freaks, or hypochondriacs, or scroungers, or, for that matter, just “poor things”, but as people valiantly trying to cobble together something that feels like a life in the teeth of gargantuan obstacles.