“But you don’t look sick,” is a sentence many people living with an invisible illness will often hear when discussing their health. It may be expressed with no malice – or perhaps even be intended as a compliment – but such language can undermine the seriousness of invisible illnesses. It is one of the challenges people living with such illnesses face when it comes to communication, particularly with friends and family members who may struggle to understand a condition they cannot immediately see the effects of. We reached out to a number of individuals living with invisible illnesses, ranging from anxiety to rheumatoid arthritis, so they could share their experiences, and offer pearls of wisdom to both those who have loved ones with invisible illnesses, and others living with such conditions.
Living with an Invisible Illness
Invisible illness is an umbrella term for a chronic condition that is not immediately apparent to others. It covers a broad range of illnesses; diabetes, arthritis, lupus, depression, anxiety, and irritable bowel syndrome (IBS), to name but a few, all fall into the category. The invisibility of such illnesses presents challenges when it comes to expressing the effects it has on one’s life, particularly to someone not living with such a condition. The oft-cited Spoon Theory was contrived as a result of its author, Christine Miserandino, struggling to express the reality of life with lupus to a close friend.
“Personally, I find that living with an invisible illness is as much of a challenge as living with any other disability or chronic illness,” says Victoria Bartle, who blogs about her life with primary biliary cholangitis (PBC), an autoimmune disease that attacks bile ducts in the liver.
“But then you have to add on top of that having to constantly explain and advocate for yourself because people generally don’t understand something that they can’t see, or that they’ve never heard of before. I’ve found that in every new social situation I feel the need to explain why I use a walking stick or walker, why I walk really slowly, use the disabled toilets, always take the lift, and why I’m always fidgeting, changing position, or asking for a specific type of chair.
“So, I explain my conditions. I explain that I’m in constant chronic pain and suffer from chronic fatigue. I explain that I get brain fog and might stumble over words or forget what I’m talking about. I tell everyone that I can’t really function outside of the hours of 11am - 3pm because of fatigue, and I usually go to bed about 6pm, so doing something in the evening just isn’t going to happen. I tell them that I need home care now, and that I’ve had a cleaner for years because I just can’t manage to do everything, and I’d much prefer to spend the energy that I do have on doing fun things that make my life more liveable.
“It’s a hard thing to live every day like this, but I’d prefer to explain, educate, and inform those I meet about my conditions than feel as if I’m being stared at, judged, and verbally challenged for being ‘unusual’ (which happens to friends of mine with invisible illnesses all the time).
“It means that I get to explain that loads of people have invisible disabilities, that we should all be a little less quick to judge each other, and just be quicker to be kind.
“I find that talking to people about my health makes it easier for them to treat me normally. I can ask for help without feeling embarrassed because people understand why I need it and are therefore fine about helping out. Knowledge and understanding is key to us being able to interact with society on the same level as everyone else. I don’t want to be labelled as ‘lazy,’ ‘work shy,’ or, worst of all, to be seen to be ‘faking it’ which seems to be the prevailing opinion of lots of people when it comes to invisible illnesses. The media portrayal of people on benefits does us no favours at all, so I think that we have to advocate for ourselves and create our own opportunities to educate others to not simply look at face value.
“We all have things going on, we all have our own personal challenges, so let’s help each other through them instead of insisting that you can only really be sick if you have an obvious, visible, or understood condition.”
Compassion is Key
Devri Velazquez lives with a rare autoimmune disease called Takayasu’s arteritis (TAK), which causes inflammation in the walls of arteries, leading to symptoms such as pain, fatigue, and dizziness. Her message is one of compassion and solidarity.
“There are a lot of misconceptions about the term invisible illness and honestly, I didn’t know what it meant until I was diagnosed with one,” says Devri.
“To go through the uncertainty of getting told you have something that currently has no cure and will give you unbearable pain every day for the rest of your life can be some tough pills to swallow (no pun intended). The biggest takeaway that I’ve received for anyone with a close friend or loved one who claims they have chronic pain that you cannot see: practice compassion to the utmost of your capability.
“Never doubt their words. I have found that expressing myself verbally is the best way to communicate what my body is asking for at any given moment. I have learned to become vocal so that I can protect myself from potentially more pain, physical or mental, in a particular moment. What we as invisible illness sufferers go through is something you may never understand.
“But know that it is enough to just be there for us as an ally, someone willing to help alleviate our suffering in any way they can.”
Every Day is Different
Shireen Hand lives with endometriosis, a gynaecological disease causing tissue that normally lines the wall of the uterus to grow elsewhere, such as on or around the ovaries, Fallopian tubes, or pelvis. Since her diagnosis at the age of 21, Shireen has also been diagnosed with fibromyalgia and osteoperosis, and has lived with bouts of depression and anxiety. She says that while the behavior of those living with invisible illnesses may seem difficult to understand, each day presents unique challenges and there is a reason behind every action.
“Chronic illness isn’t straightforward and the fact it is invisible doesn’t make it any easier for others to understand. It must be hard to see someone looking a mess, tears running down our faces, popping pills left, right, and centre, barely able to walk with the pain on one day, and then the next, be dressed and out the house like nothing is wrong.
“But, let me assure you, it’s all a facade. A face we plaster on to make us fit in with everyone around us. Something that makes us feel a little bit normal, even if it isn’t our own normal.
“We’re not attention seeking, nor are we hypochondriacs.
“We are simply trying to live in any which way our bodies will let us.”
Learning Through Teaching
Eileen Davidson lives with two forms of arthritis, a condition thought by many to affect only elderly people. Having been diagnosed, Eileen found that teaching not only helped educate others, but also herself.
“Sometimes the best way to really learn something is to begin teaching it. I found the best way to educate people around me is to be straight about what’s up with me.
“It also helped me understand my chronic illness more as I got better at communicating the misunderstood pain I felt inside.
“Looking at me you can’t tell I have two common forms of arthritis; rheumatoid and osteoarthritis. When I do inform someone, which I don’t hesitate to, responses always vary from person to person. Sometimes you can be surprised or hurt who’ll get it or won’t, whether old or new in your life. It’s particularly hard for people to understand how different forms of arthritis can debilitate someone’s life at any age, including children.
“The harder I fought my arthritis and lost weight, the healthier I would look, which makes people question or respond with but you don’t look sick or you are too young for that. Unfortunately for some it takes time for them to understand you are sick or how your illness is affecting your life.”
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Overcoming Restrictions
Robin Parrish was diagnosed with lupus in 2013. Four years later, while also living with fibromyalgia and a cardiovascular disease, POTS, he decided to take up a martial art. While some may have raised an eyebrow at his decision, it has given him a new lease of life, despite the challenges presented by his invisible illnesses.
“I was petrified when I attended my first Hapkido class in March 2017. Convinced I would fail at everything. That I would be expected to do things far beyond my physical limitations.
“I was a 41-year-old man with lupus, fibromyalgia, POTS, major depression, and more. I was unathletic, uncoordinated, and had zero physical talents. I was also out of shape, overweight, and my quality of life sucked.
“But every one of my doctors begged me to exercise more, and I came across this form of martial arts called Hapkido through a friend from church. Hapkido is one of the lowest-impact forms of martial arts. You don’t have to have giant muscles or endless stamina or tremendous energy reserves, because you use your opponent’s energy and strength against him. For example, if an enemy throws a punch or a strike, Taekwondo or other forms might have you hard block that blow. Hapkido does the opposite: you side-step the attacker and use their momentum to seamlessly move them into a takedown or an “arm lock.” Hapkido is not about fighting; it’s about ending a fight as quickly and efficiently as possible.
“Although my family and friends were supportive, some questioned the wisdom of a 40-something man living with chronic pain, fatigue, and brain fog attempting this, knowing the toll it would take. I had nothing but self-doubts about the likelihood of my addled, foggy brain learning these complex, fluid moves.
“That was almost a year ago, and I’ll soon be testing to enter my fifth belt level (of 12). I’ve lost over 40 pounds. My attitude, self-discipline, confidence, coordination, and so many other things have improved immeasurably.
“No drug in the world makes me feel better than I feel when I leave class. And I can’t believe how much I love going!
“There are a million reasons why I shouldn’t be able to do Hapkido – pain and physical limitations chief among them. It’s still some of the hardest physical activity I’ve ever done, and it always takes me a little longer than the rest of the students to catch on to a new move. That’s okay, because I don’t give up.
“So far, I’ve pushed through a metatarsal stress fracture, a twisted knee, plantar fasciitis, asthma, the worst lupus flare I’ve ever experienced, and more.
“And without hesitation, I would do it all again. As I’ve gotten into better shape and gained greater understanding of how Hapkido works, for me it’s becoming less about getting fit and more about proving to myself that lupus and fibro and everything else do not define or control me.
“It’s my life, and they can’t have it. Against all odds, Hapkido has become the greatest weapon in the battle for my life.”
Opening Up About Mental Health
Conditions such as depression and anxiety not only fall under the “invisible illness” umbrella, but also come with the social stigma associated with mental health conditions. Amy, whose blog details her own life with anxiety, believes this must be addressed in order for those living with mental health conditions to feel comfortable in speaking up.
“When someone has high blood pressure they’re prescribed medication, even though to the outside world high blood pressure can’t really be seen. In the same way, mental illness is invisible but isn’t treated with the same respect. Why is this? Both, if left untreated, can kill. Mental illness deserves the same respect as any other physical illness because one cannot function without the other.
“Do not be ashamed. Talk, get help and know that you can get through it.
“It’s easier said than done, but amazingly beneficial. Trust me!”
A person who does not have an invisible illness may never completely understand how those who do truly feel. However, by simply keeping an open mind, listening, and withholding judgement, everyone can help make the daily lives of those living with invisible illnesses that little bit easier.
A big thank you to those who contributed to this blog post
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