Lacking representation of non-visible disabilities has led to a substantial lack of understanding and adjustments for those who suffer from them.
According to the Equality Act 2010, a disability is ‘if you have a physical or mental impairment that has a “substantial” and “long-term” negative effect on your ability to do normal daily activities.’ Those with visible disabilities like mobility issues can have more obvious adjustments made for them in workplaces and public areas, ie. Ramps for wheelchair users.
Non-visible disabilities are harder to recognise, diagnose, treat, and make adjustments for. These can consist of mental health conditions, cognitive learning conditions, sensory processing problems, other physical impairments like chronic pain, as well as many others. The lack of representation and diagnosis can lead to long-term – and even life-threatening – psychological and physical effects, and therefore it is highly important to consider how we can support those with non-visible disabilities.
Chronic pain can only be considered a disability if someone has been suffering for over 12 months. As many as 15.5 million people in the UK suffer from chronic pain, and 5.5 million of those suffer from high-impact pain that disrupts their everyday activities.
Distilled Post spoke to ‘Billie’ about her experiences suffering from chronic pain due to hip dysplasia in her right hip, and a labral tear and joint damage in her left hip. Her chronic pain in both hip joints – caused by medical intervention and damage – began four years ago:
‘I was on holiday in Croatia, and I was hiking, which is something I used to enjoy doing. My hip was hurting a lot, so I rested for a few days. Then I felt something twinge and I couldn’t walk for days. I rested some more, but then a few weeks later it got to a point I was in so much pain I was limping, and that’s when I was taken to the ER. I postponed seeing a doctor for so long because I didn’t want to believe it would be a long-term condition.’
How Billie manages her pain varies from day to day. She tries to rest as much as possible and avoid doing things that will aggravate her pain, such as sitting incorrectly or climbing stairs.
‘I have to take rest days if I do too much activity. I take ibuprofen, low-dose co-codamol, and Duloxetine which is also an antidepressant. I’ve been sticking to a consistent pain regime for about a year now.’
When trying to get a diagnosis, Billie had to be the one to use the term chronic pain:
‘Even though there was this massive problem with my hip that was causing me chronic pain, they still didn’t explain to me that I would experience chronic pain, or that this was considered a disability. It took friends with similar conditions to explain to me that I needed to take it seriously, and I had to push for my GP to put it in my medical notes.’
Limited treatment options
Billie’s experience of treatment and support has been incredibly mixed. At first, she wasn’t offered anything.
‘For the first two years, I was advised by my consultant to take nothing or very strong Solpadeine (a strong painkiller) when necessary, which of course isn’t sustainable. That was it, I didn’t get much help at all. It didn’t occur to anyone to offer me help. I got lucky about a year ago because I asked for a blood test as I was experiencing chronic fatigue and couldn’t lose weight, and had a low mood generally so thought that I could have a thyroid issue. I was told that my symptoms were actually just due to chronic pain and that it could have physical and psychological side effects as well.’
Her treatment from the NHS has been very sporadic:
‘I was put on the waitlist for a pain clinic, but there’s very little research on how to deal with chronic pain. It’s not the same as short-term pain, and it affects the body completely differently. I have had multiple surgeries which have helped me a bit, but it’s taken a long time to heal. You can’t just take painkillers because, eventually, that stops working as well. You can’t just ignore it. You can’t just do exercise. None of the traditional methods work. You need a holistic approach with lots of different elements to help manage the pain, because you may not be able to ever get rid of it.’
Like many others living with chronic pain or other chronic conditions, Billie struggled to have her experience taken seriously by the medical professionals around her.
‘My first consultant, who I had been dealing with for about four years, was actually an expert on the particular issue with my hip, but he didn’t take my pain seriously. I had gone from being a very active person who went to the gym four times a week, to someone who could barely leave the house. He wasn’t particularly interested. He suggested that I lose weight, which didn’t work. Every GP I spoke to has said this despite me not being overweight by the NHS standard. It’s hard for me to lose weight because my body thinks I’m injured or dying. When I tell doctors my pain is bad, they have suggested I take painkillers when this arises, like paracetamol, which wasn’t effective.’
Billie noted this is also very much a gendered issue:
‘Men get their pain taken more seriously than women. I have a problem that can be observed on an X-Ray or MRI, and yet lots of doctors speak to me like it’s a psychological issue, and women are far more often advised to lose weight than men are. I felt like they really did dismiss my pain. When I said to a consultant that menstruating makes my hip pain worse, I was advised to use a hot water bottle which can’t even be applied to my hip. Women are more likely to suffer from chronic pain but much less likely to be diagnosed with it. Men are also more likely to be given stronger painkillers, and doctors have admitted that they believe women are more likely to exaggerate their pain. Likewise, men are less likely to have the psychological effects of their pain discussed, which is also a really big problem.’
Starting to live with a chronic pain condition takes a lot of getting used to. There is also an adjustment period for those around you, and some adjust better than others.
‘My family and friends are good at dealing with my pain, but it has taken quite a long time. People will forget the adjustments you need because it’s not in their head, but it is in yours; that’s quite frustrating, having to tell people over and over again. I don’t really tell people at work I have chronic pain or a disability as I’m worried that people discriminate against me. I’ve told people that I’ve had surgery, but nothing else.’
‘Very few people get the adjustments I do from friends and family. I think that there’s a perception that young healthy-looking women must be claiming to have a hidden disability for attention. There have been times I have been on the bus with my crutch and people have asked for my seat. They just assume that there’s nothing wrong with me.’
A lot of adjustments are required across society to better support those with disabilities. While some accommodations exist for those with visible physical disabilities, there is still much more to be done.
‘I think there do need to be more adjustments, a lot more accessibility, a lot more places without lifts. You need to have areas that are restful and comfortable for people who need to rest rather than hard plastic benches that aren’t really good for anyone.’
‘You also need to educate GPs and consultants on how to deal with chronic pain: how it works, how it looks, and how it may affect someone psychologically and physically. I only found this out recently, but I actually experience worse than most people as my nerves are more activated. I can’t produce endorphins or serotonin properly anymore because I’ve been in pain for so much time. You also get so much fatigue all the time. Very little knowledge is out there about chronic pain.’
‘I think the public needs to be educated more, and more adjustments should be made in the workplace. For instance, some people may need to work from home or work shorter hours because they have less energy.’
We asked Billie if she felt there is a difference in perception between visible and non-visible disabilities. Her answer was immediate:
‘There’s a huge difference in perception. If somebody has a visual mobility issue like a wheelchair user, it is easier in some ways to know how to accommodate them. I think there’s an attitude with non-visible disabilities that you’re making it up for attention and that you’re literally just pretending for a bus seat and it’s all a long con.
Until they experience an invisible disability, people may not think they even exist.’
About the author: Jennie Howitt is a contributing features writer with a degree in English Literature, a series of published poetry, and an interest in arts, culture, feminism, and healthcare.
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