What Are Invisible Illnesses? 7 Things People With Invisible Disabilities Want You To Know
It's estimated that 10 percent of the U.S. population suffers from an invisible illness, or a chronic condition or disability that isn't obvious to anybody who doesn't have a trained medical eye. And often these conditions result not only in pain and physical issues, but in social difficulties. Being the friend, coworker or family member of a person with an invisible disability (or several) means confronting your own preconceptions about what disability "looks like." To get a perspective on what people with invisible illnesses wish they could tell those around them, Bustle spoke to Dr. Rebecca Quigg, a writer and events manager who has Ehlers-Danos Syndrome Type III, an invisible inherited disorder that causes joint hypermobility, which increases the possibility of dislocation, fatigue and pain, and affects everything from eyesight to circulation and breathing.
"Many chronic conditions are invisible: don't assume that someone's fine just because they don't seem to be bleeding all over the floor," Dr. Quigg tells Bustle. "Many people with chronic problems are very good at pretending they're feeling better than they are." Awareness of this performance, she says, needs to influence how you respond to people with invisible conditions. "If they confide in you, don't tell them that they don't look unwell, or that they seem fine," she advises. "Equally, if you can see how rotten they're feeling, don't make a big song and dance about telling them they look awful, and should sit down/rest/take some painkillers." Here are seven things that Dr. Quigg wants you to know about invisible illnesses and the people who have them.
Invisible Illnesses Aren't Always The Same Every Day
A basic understanding of invisible disability and chronic conditions, Dr. Quigg tells Bustle, involves understanding that markers of "wellness" and "illness" don't necessarily apply as they do to a person with the flu. "Just because they were well enough yesterday to go and run a mile but today they can barely walk up the stairs doesn't mean they're faking it," she says. "Just because they were really awfully unwell last time you saw them but seem really chirpy this time doesn't mean they're getting better."
This isn't an experience that you, as a well person, need your disabled friend to explain, either. "The unpredictability sucks for the patient; don't put them in a position where they feel like you need an explanation every time their situation changes," Dr. Quigg advises. "Accept them for what they are at the moment, and work with what you both have."
It Is Important To Them That You Listen & Believe Them
"A lot of people who have chronic conditions, and particularly chronic pain conditions, have struggled an awful lot to get people to take them seriously," Dr. Quigg says. "Knowing that their friends explicitly trust [that] they're being honest about how things are means an awful lot, and doesn't take much." Basic rule: if you wouldn't question how a person with a visible disability is feeling, you shouldn't do it to a person with an invisible one.
If they have chosen to tell you what's happening, that's a privilege, and it's one you should take advantage of, says Dr. Quigg. "Sometimes having to keep explaining is utterly exhausting," she explains. "It would be amazing to feel as if someone was really listening- frankly, even taking notes, so they actually understand what is going on." If you've never heard of their condition, go away and research it to understand it better and be more aware of their needs.
They Don't Want To Talk About It All The Time
Disability is not necessarily a person's defining feature. Whether they choose to talk about themselves as "a disabled person" or a "person with a disability", and how much they want you to actually discuss it with them, is up to them. Just because they've made the choice to reveal it to you doesn't mean you need to keep going on about it. "Sometimes it's nice to pretend it's not there, and to ignore it," Dr. Quigg says.
Practically speaking, she says, you need to give people with invisible conditions agency and let them steer the conversation. "Don't hover, and don't repeatedly ask if they 'should' be doing [whatever they're doing], don't keep bringing it up. Let them decide if it's time to talk about it," she tells Bustle.
People With The Same Condition Are Not The Same
"A lot of chronic conditions have a really wide range of associated symptoms, problems and issues," warns Dr. Quigg. "Just because your first friend has a particular set of symptoms doesn't mean your other friend has the same, so don't tell them airily that you know all about it. You don't. And definitely don't tell them that your other friend 'has it worse' or 'has the serious version.' Just don't."
It's also important to note that people with the same condition remain different emotional beings with different needs, so a one-size-fits-all reaction from you isn't the right approach. "Some people like cheerful dismissal when they're feeling crappy, some people like a wee bit of hand-holding," says Dr. Quigg. "Some people like to be in the middle of everything when they're feeling like sh*t, some people like to be in peace and quiet. Some people want lots of hugs, for others hugs will cause more pain. Sometimes the same person can need one thing at one point and another thing at a different point." Understand and be sensitive to what the person with the disability needs, and don't assume that their needs will be static or identical to anybody else's.
Sometimes Your Help Isn't Really Helpful
If you're not their medical professional, it's probably not really a good idea to weigh in on how they're managing their symptoms and dealing with their condition. Asking "have you tried this?" is likely not to get a good response. "They probably have tried it, and if they haven't, there's usually a reason," Dr. Quigg says. "If you find some information you think is interesting or could be useful, feel free to pass it on (unless they've asked you not to), but don't keep asking if they've tried buffalo semen or only eating cabbage and almond milk." Many people with invisible illnesses, she says, are given a lot of unsolicited advice, and that doesn't make dealing with it any easier. "It's exhausting being belabored with 'miracle cures', and in the case of things that require massive lifestyle changes, it can leave the patient feeling like a failure for not doing everything. Give them helpful info, and then leave them alone to make choices for themselves."
So what can you do? Practically speaking, she says, it's most helpful to ask. "If they admit they're feeling grim, don't flutter about them and fret. Just ask what you can do to help — and don't whine if it's all dull things like a cup of tea, helping them upstairs, running a bath, or fetching some meds," she says. Don't over-romanticize their conditions or what your help might require: Do what you're told. "Even if it isn't as glam as mopping their fevered brow and feeding them grapes, it makes much more difference," Dr. Quigg tells Bustle. "Don't put them in a position where they have to prioritize reassuring you over helping themselves feel better." Even Cleopatra-style grape-feeding can get really boring after a while.
They're Still People, Too
A person with an invisible disability is not a saint or an inhuman being, and it's important to keep that in mind. "Even ill people can be a bit shit sometimes; it's hard sometimes to admit that your ill friend has done something not cool, because it can feel like you're blaming someone who can't stand up for themselves," Dr. Quigg says. "But that's as disrespectful to them as disbelieving them. If you're not sure whether something they've done is a result of how they're feeling or just them being human (and thus a bit rubbish), gently mention that you found their behavior quite difficult and ask whether it's related to how they're feeling."
And don't exclude them or leave them out of the loop unnecessarily. "I wish people understood that even though I get it, it hurts to hear that they didn't come to me for help because I'm often in pain," Dr. Quigg tells Bustle. "I can't change this, so I wish people didn't see it as changing who I am and what I'm good for. It doesn't make me less able to help, most of the time. And when I'm not able to help is a decision I have to make and live with, not you. You don't get to choose for me."
It's Not Just About The Condition Itself
Invisible disabilities, like many chronic conditions, contain multitudes, and being aware of those is a crucial part of helping somebody with one, Dr. Quigg explains to Bustle. "It's not just about the disability," she says. It's about the weariness of being in pain all the time, and the lack of sleep and the sheer effort of putting one in front of another. It's constantly balancing side effects versus pain, and pain versus the need to try to have a life. It's always having to be great because otherwise people worry; it's having to organize your life around how many steps you can grit your teeth through. It's concentrating on a conversation even as your hip is on fire and your knees are gripped by brambles."
While you may not be able to fully understand or empathise with the full extent of the pain and difficulty experienced by a person with an invisible disability, it's important to remember this. "It's not an invisible illness, it's an invisible life," says Dr. Quigg. "An invisible world." And being a part of that world means behaving in a supportive way that doesn't cross boundaries or make anybody feel like an idiot. If you make mistakes, apologize and admit what you did wrong, and you can move forward together.