Invisible illness and disability: what other people should know

Illness and disability affect many people’s lives. For some, their conditions are apparent, but for others, their conditions aren’t visually obvious. Although someone may look fit and healthy, they may have a debilitating condition that means they suffer from low mobility, chronic pain and have difficulty going about everyday tasks such as bathing and getting dressed, often having to rely on walk in shower or bath units and other mobility aids.

Examples of invisible illnesses and disabilities include chronic pain conditions, such as fibromyalgia; and mental illness, such as depression; but they can also include conditions and diseases such as diabetes, arthritis, IBS, heart conditions, celiac disease and many, many more.

We spoke to three bloggers living with a hidden disability who are passionate about educating others and breaking the stigmas surrounding their conditions, asking them how they feel others could be more understanding and supportive.

Heather, Dizzy The Donkey

“Just people knowing that someone can be sick, without looking sick, makes the world of difference.”

Heather from Dizzy The Donkey is a teacher and actress living with MS. Heather uses her blog to educate people about the condition and shed light on how debilitating its symptoms can be.

“Living with MS is like being in a tale of never-ending sleepiness,” says Heather. “A sleepiness which can completely stop you in your tracks and can even suddenly turn up with some little friends along the way (the dizzies, blurry eyes etc.). This can make day-to-day life a bit trickier, and constant planning is required to get through the day.”

Heather told us what she feels are the main preconceptions around invisible illnesses.

“The problem with invisible symptoms, such as sleepiness and the dizzies, is that no one else can see them. This can lead to problems, such as people being judgemental when they see you on the bus not getting up to offer your seat to the elderly lady who has just got on, or parking in a disabled parking bay. The dirty looks you get thrown are not exactly helpful, and you end up feeling like you’re doing something really awful, even though you know you’re not.”

Heather believes that the more people that understand that illness and disabilities aren’t always visible, the better.

“For every judgemental person, there is an amazing, understanding person, and as more people learn about invisible illnesses, the more understanding people there are out there. Just people knowing that someone can be sick, without looking sick, and just understanding, makes the world of difference.”

Donna, February Stars

“The most important thing someone can do is to have empathy and compassion. Listen to someone and believe what they are saying.”

Donna from February Stars set up her blog in 2013 after initially being diagnosed with fibromyalgia. She has since, however, also been diagnosed with Lyme disease and chronic fatigue syndrome.

“I have lived with chronic illnesses for several years and, during that time, have functioned at varying levels; from working full-time to being mostly housebound,” says Donna. “Right now, I’m in the grey area that exists between the two. I can go through periods of feeling reasonably well but, equally, can experience times where my symptoms are exacerbated, and I have no option but to rest. My health is still unpredictable.”

Although the conversation surrounding chronic illness has opened up in recent years, Donna still feels as though there is prejudice.

“I feel there is still a stigma attached to invisible illnesses. Simply because people don’t understand the variable nature of them and make assumptions based on how someone looks and acts.

“Luckily it hasn’t happened to me, but I know of people who have been accused of faking how sick they are. When the reality is that they are putting on a brave face and acting well, despite their symptoms.”

Donna says it’s important to remember that when someone with a chronic illness looks like they’re doing well, you never know how they might actually be feeling.

“It’s worth remembering that going to the effort of putting on make-up isn’t necessarily a sign of doing better. It can be for self-confidence to hide the dark circles and dull, pale skin. That gorgeous, floaty dress that makes someone look so well put together? It could be because it’s the only thing they can tolerate touching their skin as waistbands are far too painful.

“The most important thing someone can do is to have empathy and compassion. Listen to someone and believe what they are saying.”

Eileen, Chronic Eileen

“Stigmas don't just stump compassion and understanding, they also hinder crucial treatment, funding and research.”

Eileen from Chronic Eileen was diagnosed with rheumatoid arthritis at 29 years-old, later being diagnosed with osteoarthritis and fibromyalgia before she turned 33. After becoming an ambassador for the Arthritis Society, Eileen started her blog as a way to create further awareness about the disease.

“Rheumatoid arthritis is more than just joint pain,” says Eileen. “It's consistent chronic fatigue, lowered immune system, muscle pain, stiffness, cognitive dysfunction and inflammation that affects organs such as the heart, lungs, skin and eyes. Each day is a struggle with overwhelming and multiple types of pain, debilitating fatigue, weakness, memory issues, malaise, side effects and mental health problems.”

Eileen told us more about how her rheumatoid arthritis affects her day-to-day life.

“It can be a challenge to grip everyday items you take for granted, like a toothbrush. Problem-solving and critical thinking can feel blurry, and it takes crucial management of daily activities to manage pain and fatigue. It also makes you a germaphobe because your lowered immune system makes it harder for you to fight off infections, including the common cold.

“But looking at me, I look like a young, vibrant 33-year-old woman who doesn't have more health concerns than nights out with friends or dates. I don't look like I struggle to make my 6-year-old son's bedtime or when my 70-year-old father, who walks with a limp from osteoarthritis, drives me around, that handicap parking pass is actually for me. When I’m with him I escape the judgemental looks of people questioning how I am disabled when I look fine. They wouldn't expect him to have more energy than me.”

Like Heather and Donna, Eileen also finds it hard to have her chronic illnesses taken seriously because of the misconceptions surrounding a hidden disability.

“Those who look straight at me to move out of the disabled seats on public transit can't see how rheumatoid arthritis had riddled my body and caused secondary osteoarthritis. They can't see how much I need that seat.

“The misconceptions that arthritis is only joint pain, only affects the elderly and that it’s ‘not that serious’ - these stigmas don't just stump compassion and understanding for those living with any of the 120+ forms of the disease, but it also hinders crucial treatment, funding and research.”

When it comes to hidden illness and disability, just being in the knowledge that someone could look healthy, but actually have an illness or disability that you can’t see, can make all the difference. Being kind, considerate and believing someone’s pain or discomfort, even if you can’t comprehend it, is all it takes to lift the stigma surrounding invisible illnesses and disabilities.