'Just because someone looks fine, doesn’t mean that they can’t be ill': Living with an invisible disability

Raven Lane was out at a club in Glasgow, dancing and enjoying herself like most 28-year-olds, when she needed the bathroom.

She took a friend into the disabled toilet with her to help her get out of the jumpsuit she was wearing, when a security guard knocked on the door.

Lane was escorted out of the toilet to the front door of the club and asked what she was doing using a disabled toilet.

“You’re not going back in there because you were taking drugs in the toilet,” she says the bouncer told her. “I’m really not, the only drugs I’m taking are the ones that are prescribed me, and I have a note from my doctor for that,” Lane replied.

The police were called and she was forced to leave the club for using the disabled toilet.

“I was raging,” Lane tells Holyrood.

Lane lives with two painful, long-term conditions – rheumatoid arthritis and fibromyalgia – but her disability is invisible. And that night at the club the security guard was not listening.

“The bouncer said, why are you using the disabled toilet? And I said, because I’m disabled. And they asked, so why do you need an extra person in there with you? I said, because I’m wearing a onesie and I can’t get out of it,” she says.

“He’s like, if you knew you were disabled, why did you wear a onesie?

“I didn’t know there was a fashion police. I didn’t know I needed to check a disabled website to wear a onesie.”

She says the bouncer told her: “If you have to put a blue badge up on your car, then you have to bring it into the club to show us you are disabled, or tell us before you go in.”

In Scotland there are 2.2 million people living with one or more long-term conditions. One third of adults have a long-term limiting mental or physical health condition or disability. Many of these people hide their conditions well, but this can cause them to be judged unfairly.

"If I had a pound for every person that stared at me when I parked in a disabled parking space, I’d be so rich,” Alex Collins, who also suffers from rheumatoid arthritis, tells Holyrood

A simple trip to the supermarket can become a debilitating chore for people living with chronic illnesses. Both Collins and Lane have blue badges that allow them to park in designated bays.

“What seems like only two or three steps, it’s a huge difference when you’re constantly just getting waves of pain every step or feeling like you’re standing on glass. It’s overwhelming,” Lane says.

She says parking in a disabled spot “gives you a bit longer in the shop to do what you need to do, before you’re out of breath and you have to go home”.

Disabled parking and toilets aside, finding an understanding employer can be almost impossible.

When Collins was first diagnosed with rheumatoid arthritis she worked at a supermarket. After trialling working in a few different sections of her workplace and taking some sick leave, she says her manager told her she should “just look at quitting my job and going on benefits”.

“I’m like, that’s not really the solution, I want to work I just need a bit of help to work,” she says.

Collins now works part-time for a call centre, and says it surprised her how understanding her new employer has been.

“They’re really good, they’ve made loads of workplace adjustments, they’ve reduced my hours twice in three years that I’ve been there. They let me away for all my appointments and they always have a catch up with me when I get back to see how it went, if I need any support.”

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But on the flip side, after three years with this employer Collins is afraid to seek work elsewhere. She feels “stuck” because what if the next workplace is different?

“The job’s a bit boring, but I don’t want to look for a job anywhere else that’s more interesting or better paid because they’re probably not going to be as good of an employer,” she says.

“I feel like I’m just kind of stuck there. It’s not the worst job, but I don’t really want to work in a call centre forever.”

Lane says many employers don’t understand why she is tired. Her conditions often cause excessive fatigue and to get to her interview with Holyrood, Lane says she needed to rest for two days prior.

“I get really tired to the point that I don’t have a choice whether I go to sleep or not. It’s just really hard to get a good employer, a lot of them are just like, well, you cannae come in, you’re tired.”

She often feels guilty when she isn’t using her wheelchair.

“If I am in my wheelchair, I feel alright to be off work, but because I’m not in a wheelchair 24/7, I’m like, oh, people are going to think I’m like cheating the dole or skiving work and just being lazy. I feel like I’m taking the Mickey because society is built that way of, you are young, you should be working and that is it.”

Lane worked in scientific research administration when she was diagnosed with her conditions. Being away from work caused her to miss training, so she decided: “I better jump before I’m pushed, so I left and I’ve been on PIP [Personal Independence Payment] and ESA [Employment and Support Allowance] since.”

On top of losing work, Lane has lost some friends who didn’t understand why she could not always keep up with them.

“It is very isolating, but I do try my best to get out and see as many people as possible,” she says.

John Paul McBride, who lives with myalgic encephalomyelitis (ME), a long-term and fluctuating neurological condition that causes symptoms affecting the nervous and immune systems, says it took his family time to understand his condition.

“It took my children a while to realise how sick I was, because they were used to me being super dad,” he tells Holyrood. “It was brutal, horrific and I was ready to go on complaining, but when you start pushing negativity, it was affecting me.

I was just basically being really angry, and the anger is because you’re not visible

Sometimes he has to lie down for days, weeks or months because of ME. When he tells people about his condition, he says they often suggest treatments or medical advice.

“A lot of people take on that role of ‘I can help you, by drinking green tea, doing exercise, you should go to this place and weed daffodils’ or whatever,” he explains.

“People want you to feel better, they’re always offering you some kind of medicine.”

With all these problems, what’s one thing all three would like to change? The overwhelming answer is PIP.

For people with long-term or lifelong illnesses, having to go in and get reassessed for PIP every few years can cause a great deal of anxiety. Lane says her PIP is up for renewal in May 2020 and she is having “nightmares” about it.

“I hate it, I hate it, I hate it,” she says. “Even though my condition is a lifelong condition and there is no cure for it, every three years I get my car and my money stopped to go in for an assessment to see if I’ve got better.

“Then you have to go in and if the person that you’re seeing is having an off-day or doesn’t like you or is just really angry at anybody in their life, you get it taken out on you and your benefits get stopped, your car gets taken away and you have to go through it all again.”

For PIP to be renewed, a letter is sent out and the individual is asked to fill in a form, which is then sent back with supporting information to the Department for Work and Pensions. The individual might be asked to go for a face-to-face meeting with an independent health professional “to discuss how your condition affects your daily life”.

“It makes you feel like you are fraud because you’ve got to go in on your worst day,” Lane says, adding: “When I say you need to go in on your worst day, I mean you need to be like two days, not having a shower, no deodorant on, no makeup, don’t even bother brushing your hair for a week, let it go wild, go for a jog and then go in.”

She says PIP assessors need to be better trained to understand invisible conditions and says she is often subject to “tricks and things to get people off the dole”. “Like, sit and wait for three hours in the waiting room, before you get taken in – it’s a test to see if you can wait three hours sat down.

“If you’ve got medical certificates and you’ve got the evidence to back you up, why are we getting treated the same as people that don’t have the evidence? If you’ve got a long-term condition, why do you need to go through it over, and over again? Everyone I know that’s got it is scared that they just have to hiccup wrong and they’ll get everything taken away.”

Collins says: “They basically judge you on that one hour that they see you, that’s all that counts. We have a friend who had somebody come to her house and do her eyebrows, wax them, and when she went to her PIP assessment, they told her because she could get her eyebrows done, she was fine, and she didn’t get an award.”

“For the last two years I’ve been in a panic about it. If I lose my PIP, I lose my car, and I can’t afford a car like that by myself.”

The Health and Social Care Alliance of Scotland has 2,700 members including large, national support providers as well as small, local volunteer-led groups and people who are disabled, living with long-term conditions or providing unpaid care.

“The key issue for us is making sure that we bring to the surface the lives and experiences of those people,” chief executive Ian Welsh tells Holyrood.

The Alliance recently published a book titled Humans of Scotland, with stories about the struggles of living with illnesses, disabilities and as an unpaid carer.

Welsh says it’s vital that those living with invisible conditions have their stories told. “This is about awareness, it’s about bringing out into the open some of the daily issues that people face, people who live with an invisible condition or who are managing or self-managing a long-term condition don’t live in isolation. It’s about making sure that these issues are aired in a public policy context.”

Earlier this year an All-Party Parliamentary Group on Any Disability Signage was created at Westminster, chaired by East Lothian MP Martin Whitfield.

Whitfield has been promoting a new “any disability” sign, which he says should be used in toilets and parking spaces across the UK. The sign (pictured below) replaces the wheelchair symbol and is based on a design produced by 14-year-old Grace Warnock, who has Crohn’s disease.

This is one positive step forward, but for Lane, Collins and McBride, greater awareness would be lifechanging. As Lane puts it: “All we can do is just chip away and chip away until everyone’s got the message –

 Just because someone looks fine, just because someone’s a specific age, doesn’t mean that they can’t be ill.