Voices from the edge
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.”
Relationship with health and care providers
Lots of common themes emerged, especially in relation to inadequate care, or not wanting to access services because of experiences of disbelief.
“The experiences I’ve had has destroyed any trust or respect I had for Social Workers. I now dread any interaction and have less care than I need because I’m scared to ask for more.”
“With medical care I assume I will be disbelieved especially regarding ME and so keep my interactions to a minimum. This means my healthcare is not adequate. With social services, I’ve recently found it doesn’t matter what I say about my health condition or care needs, their agenda seems to be about reducing my care provision.”
Many responses talked about a lack of trust;
“I don’t trust health and care providers. My health – both mental and physical – have deteriorated and I refuse to seek help.”
Relationships with family and friends
The experience of disbelief was all too common, and was an overwhelming sense of the loneliness of life with chronic illness.
“Negative responses to my diagnoses have ranged from derision to aggression, some showing indifference; neither challenging me nor acknowledging it. I have to assume disbelief.”
“I chose to stay away from everyone because I’m too exhausted to get anywhere or cope and get sensory overload. I’ve ended up living alone and fear my future and dying alone.”
“My conditions have particularly affected my relationship with my partner. He has had several affairs. He is now essentially my carer.”
Relationships with employers
Very few responses told of supportive or understanding employers. The sense of being a ‘nuisance’, experiencing discrimination and bullying were strong themes.
“My condition completely destroyed a dream job. I had just been promoted when I got sick and the new accommodations that I needed I just wasn’t able to effectively advocate for. I felt like a burden and an inconvenience.”
“Despite being highly qualified including a doctorate I have no job its so difficult to get anything. I think it’s compounded by gender and race and how they intersect with disability. Bottom of the pile sadly.”
“I’ve experienced really bad discrimination and bullying because of my health conditions at my last workplace. Since they made me redundant because of my disability, I have not been able to return to work, I am terrified of more bullying.”
Access to benefits and services
Unsurprisingly there were no positive experiences of the DWP and claiming benefits. The theme of systemic disbelief was extremely strong.
“I put off claiming for a higher award of DLA (that I knew I would qualify for), until I was obliged to claim PIP, because of knowing how stressful the inevitable disbelief would be and the inevitable impact on my health.”
“I’ve not claimed anything due to fear of not being believed My GP and surgery are not supportive. I’ve been made to feel that my conditions were in my head, that I wasn’t worthy enough and certainly not believed, it has fuelled my anxiety and worsened my agoraphobia.”
“I have had to constantly fight for my benefits. I’ve appealed them often and even had to go to tribunal as the assessor incorrectly assumed I could walk over 200 meters. It really took it out of me to prove to them I am actually disabled. It made many of my conditions worse and has left me with assessment PTSD. I’m forever worried I wont be believed.”
Identity as a disabled person
The overwhelming arcs were those of shame and fear of disbelief. The damage that does to our sense of self and it’s impact on our lives is immense.
“I still find it very hard to accept my disabilities, especially as few people acknowledge them. The constant dismissal and not being believed or simply being belittled makes me doubt my symptoms and health status on a daily basis. I have internalised these constant doubts and dismissals and I find it very hard not to be ashamed to the core for not being fit and healthy.”
“I think that I should be able to identify as a disabled person but fear that as I look and move as a normal person most of the time that others think I do not justify the status. Even though I spend much of my time at home in bed.”
“I often feel very embarrassed and ashamed of being on benefits, using my wheelchair, using my blue badge and needing help with things. I know these feelings don’t make sense because I need these things. But I think because there is such little awareness of invisible illness it makes you feel like a fraud.”
Thank you to all the women who took part in our survey. Your truths have been spoken and they informed our response.