Approximately 20% of Americans are living with an invisible illness. Some of them have always had it. Others, people like me, are still adjusting to life with a hidden disability.
Because our society still clings to outdated narratives, there are numerous misconceptions about invisible illnesses and disabilities. Unless we have an invisible illness ourselves or know someone who has one, we might not really understand what they are or how they work. That lack of understanding may seem minor, but they infiltrate our perception of the world around us.
7 Things People with Chronic and Invisible Illnesses Need You to Know
#1 We Don’t Look Sick
I have a Peloton and a paddleboard that get regular use, and I teach yoga when I’m not writing full-time or single parenting two kids. I don’t look sick. Yet, I have an invisible illness that impacts my life about half the time.
I have PMDD or premenstrual dysphoric disorder. I didn’t always have it. I first became aware of it in December of 2019, and I wasn’t diagnosed until 2021. It’s an invisible disorder that can impact anyone with a uterus. It’s considered a neuro-endocrine disorder that comes with mood swings, brain fog, a lack of impulse control, heightened anxiety, depression, pain, and suicide ideation. Just because I don’t look sick doesn’t mean I don’t have a chronic, invisible, and hidden disability.
Many people with invisible illnesses don’t look like they have one. Yet, there’s still an idea that a disability is something we can see. Society promotes the idea that a disability is a wheelchair or a missing limb, something tangible we can see and understand. We think accessibility means larger doorframes and ramps for chairs, but schools and workplaces rarely stretch to accommodate the needs of those whose disabilities cannot be seen at a glance.
If we don’t “look sick”, then the assumption is that we’re not.
#2 Doubting the Diagnosis Won’t Change It
I don’t mind explaining PMDD because I feel like it helps with awareness, but many people with invisible diseases are tired of having to educate people who could easily go educate themselves. I understand the frustration. I get tired of telling people that PMDD isn’t something that happens while I’m menstruating. It happens every 14 days and lasts until the second or third day of bleeding. In other words, I experience PMDD for about two weeks each month.
Doubting the diagnosis won’t change it. When my children were first diagnosed with autism spectrum disorder, we encountered this attitude often. They don’t look autistic, people would say. They don’t act it either. In other words, they don’t meet a common stereotype about autism. Yet, the stereotype isn’t inclusive of the full spectrum of neurodivergence.
It’s important for people to understand that (a) we don’t always want to take the time to explain our condition in detail and (b) doubting the diagnosis of professionals won’t change it and actually invalidates our lived experience.
#3 If We Didn’t Ask for Your Advice, We Don’t Want It
I don’t need a list of what essential oils someone thinks will “cure” my PMDD. I have medical professionals I see and groups I’m a member of who are better qualified to give advice. I have traditional and alternative practitioners involved in my care. If it’s out there, I’ve probably tried it. What works for someone else may not work for me.
People with invisible illnesses often receive advice. Many of them begin have you tried … Yes, we probably have. What would be more helpful than advice is understanding, kindness, and support. Instead of giving advice, ask how you can support us.
A good rule of thumb for life is to always ask before offering advice.
Unsolicited advice is unwanted advice.
Giving advice is usually something that soothes the person giving it. When we offer suggestions, we’re trying to show support and be helpful. It alleviates the discomfort we may be experiencing, but it’s helpful to remember that it may cause discomfort for the person who has to listen to it. Asking is a best practice to avoid causing someone with an invisible disability added stress or frustration.
#4 Our Limitations Can Vary
I sit down at my computer to work and take a sip of coffee. I haven’t started yet because I’m trying to remember if I took my medication the night before. Brain fog is just one symptom of my diagnosis, and it feels some days like it’s getting worse. I reach for a memory of taking my medication but can’t be 100% sure that the memory is from the night before.
It’s important for healthy people to remember that our limitations can vary. On my good days, I am ambitious, motivated, and athletic. My mind is sharp, and I have plenty of energy for work, working out, and even taking on new projects. But on my tough days, I struggle to remember basic things. I’m exhausted even if I haven’t done anything. My body sometimes aches, and I’m simultaneously anxious and depressed. When unmedicated, the suicide ideation is strong. It often feels like a rollercoaster.
People with invisible illnesses are often held to a healthy person’s baseline.
Because we don’t “look sick” and meet a stereotypical view of illness, we’re rarely extended accommodations or granted leniency for our limitations. Most of us learn to work through them, gritting our teeth and doing our best approximation of “normal”.
Over the last couple of years, I have learned to flow with the cycles of my condition. When I’m well, I work harder than ever to make sure that I’m prepared for the days when I struggle to do even the most basic of tasks. I’ve learned how to adjust my life to my disorder, but I know even that is a privilege. Most people with chronic pain and invisible disorders can’t look at a calendar and know which days will be good or bad.
#5 We May Use Handicap Spaces and Stalls
If someone parks in a handicapped space but doesn’t “look handicapped” or uses that bathroom stall, mind your business. The fact is that many people with invisible illnesses need that space or that stall, and they don’t have to explain to you why that is or how they managed to qualify. Nor should they have to wait for healthy people to finish using the spaces or stalls that are supposed to remain available for them.
It’s important to understand that those accessible stalls and spaces should remain accessible for those who need them.
Additionally, it’s important not to park on or over the line in spaces beside accessible parking. Understanding basic etiquette can help keep parking and bathroom stalls available for those who need them even if we don’t understand why they need them.
#6 Rest isn’t Lazy
It would help if our societal consciousness would embrace productive rest. Rest isn’t about being lazy. It’s useful and necessary.
Even for healthy people, rest helps health and productivity.
However, rest isn’t a cure for an invisible illness. It won’t make all our problems magically disappear, but it can help. The last thing we need when trying to rest our bodies is the accusation of laziness.
Honestly, this was something I had to adjust to when I first began having symptoms of PMDD. I was used to being highly productive and full of energy. Yet, on my PMDD days, I need extra sleep. I go to bed early, I sleep a little later when I can, and I take naps whenever possible. I am exhausted, and sleep seems to alleviate some of my discomforts. I’m not being lazy. I’m taking care of a body experiencing the fluctuations of an illness.
#7 We Might Need Medication
People who have chronic pain and invisible disorders aren’t “drug-seeking”. Many of us actually require medication. One of the more frustrating parts of having a disorder no one can actually see is that I’ve had people talk at length about why antidepressants are bad. Let me be clear: my antidepressants are saving my life. It has been the only thing that has helped with the full-blown suicide ideation caused by my disorder. It doesn’t make me feel high. I’m not addicted. It returns me to myself. It makes me feel more like me.
For people who don’t want to take medication, don’t. But remember that other people are different. We don’t need judgment or criticism for taking care of ourselves.
Many people need medication for symptoms other people can’t see, experience, or understand.
These tips aren’t all-inclusive. Invisible illnesses can include ADHD, anxiety, autism, chronic fatigue syndrome, cystic fibrosis, depression, Ehlers Danlos syndrome, endometriosis, fibromyalgia, lupus, rheumatoid arthritis, and more. The list of invisible illnesses and chronic disorders is long.
When we consider that 20% of Americans have a hidden disability, we can overlook the fact that this simply includes people who are diagnosed. It doesn’t include people who don’t yet realize their symptoms qualify as an illness, and it doesn’t include diseases we haven’t yet discovered. That’s a lot of people struggling every day with something other people can’t see — and often don’t try to understand.
It’s important to raise awareness about the different types of invisible illnesses and disabilities out there if only to make the world a kinder, more inclusive space. While society may be slow to change, we can do our part to make sure that we’re being sensitive to the needs of the people around us. We can stop making assumptions based on outdated stereotypes. We can stop applying our own life experiences, energy levels, and work ethics to everyone else. We can remember that everyone is different, and kindness costs nothing.
Originally published on Medium