Not every disability is visible - In fact, most aren’t. In 2002, the United States Census Bureau estimated that 96% of illnesses are invisible. So why do so many in the disabled and chronically ill community struggle to access proper healthcare and support? We live in a society that favors non-disabled people over those that are disabled. If you have someone with an invisible illness in your life, they need your support and understanding more than you may realize. One way to show your loved ones you support them is by deconstructing how the world treats them differently and how your own assumptions may affect your view of them.
I have an aunt I only met once as a kid. I grew up hearing stories about how crazy she was; how she was lazy and couldn’t be bothered to get a job, how she faked illness to avoid responsibility, and that she was a leech to the government and my grandmother. She was confined to a wheelchair, but I grew up being told she didn’t need to be, that her illness was all in her head.
I didn’t challenged that narrative until I was nearly 40 years old. Only then did I learn several of my cousins have been diagnosed with Ehlers-Danlos Syndrome (EDS), which I was acutely familiar with because my best friend with EDS lived with me during Covid. EDS is a genetic condition that affects the production of collagen. Collagen is found in every muscle and organ in the body; without enough of it, joints are loose (hypermobile) and organs are weakened. It is a difficult condition to diagnose because it affects so many different parts of of the body, so doctors often miss the connections, and medical gaslighting is rampant.
It is a very painful condition. The constant pain and fatigue, the migraines and dislocated joints, the gastrointestinal issues, and common comorbidities like POTS, IBS, and MCAS create a cascade of health problems that can be truly disabling; many with EDS end up in wheelchairs. When I learned that EDS ran in that side of my family, I realized my aunt was likely truly disabled and always had been. But because her condition hadn’t been understood by science, she had a lifetime of being dismissed and vilified to show for it.
Unfortunately, people with a chronic invisible illness can struggle to get diagnosed and receive the support they need from their doctors, families, and communities. While the cause of their chronic illness or disability can vary widely, advocates and members of the disabled community report a strong similarity in experiences living in a world that can be cruelly ableist (ableism: discrimination in favor of non-disabled people).
One of the most common experiences among the invisibly ill is not being believed or taken seriously. This can take a severe toll on the mental health of someone who is chronically ill. Some of the experiences I have heard about from various friends include:
- being told it’s psychosomatic or a panic attack
- being told losing weight would fix their health issues
- being told they couldn’t be in pain because they were smiling
- being yelled at by strangers for using handicapped parking
- Ending up in the ER because their family didn’t believe they had a food allergy
- being reprimanded by an employer for leaving meetings to throw up
- losing relationships because they were too unreliable to make plans
- fainting after a non-disabled person refused to give up a seat on public transport
- being exposed by siblings to sick children
- told they are just looking for attention
The constant gaslighting is as unnecessary as it is cruel.
Another experience those with invisible illnesses largely share is receiving unsolicited advice. If you look at conversations happening on social media, just about every chronically ill person has been told that yoga and meditation would fix their problems. And, if they are in a bigger body, they are told that losing weight will fix them. It took a while for me to realize that when my best friend expressed her difficulties, making suggestions was pointless, as she had done so much more research than I had. She had tried every solution I could imagine, and more.
It can be hard to relate to someone with chronic pain or a chronic illness. There is a huge difference between an occasional headache and experiencing years of constant pain, nausea, migraines, or gastrointestinal issues. The mental stress of living in a body that feels like it betrayed you and your dreams for your life can be excruciating. You have so many experiences stripped from you, whether that is marriage and kids or the ability to travel or have a career. All of it can take a huge toll. It can make your disabled loved one understandably stressed, depressed, bitter, or angry.
How to Support
So, what can you do to support your loved one with an invisible illness? A few suggestions:
- Believe them. Even if they don’t look sick to you, challenge yourself about why you think that. What assumptions are you making? Consider this before you challenge them about their lived experiences, and then…just don’t.
- Be flexible without judgment. They get judged a lot for canceling plans or not being able to do as much as non-disabled people. Be a safe space for them and make plans knowing they may change or get canceled. Let them know there will be no repercussions on your relationship if they cancel at the last minute.
- Offer support, not advice. Ask them what they need from you, rather than making suggestions. Sometimes they may need space to deal with things themselves, and sometimes they may want someone there to help or support them. Don’t assume you know what they want or need better than themselves.
- Be patient. Whether it’s hearing the same complaints about their life repeatedly, or understanding if they don’t get back to you for a week, they are aware people get annoyed with them. Remind them often they don’t need to apologize for taking care of themselves and their health.
- Have conversations about what you can do to make their life easier. Sometimes they are too embarrassed or uncomfortable to ask for help, or they may desperately be trying to maintain some semblance of independence. Communicate what you are able to help them with, and find ways to make it easy for them to get help from you. For example, it may be more tiring to explain the chores they need done or the groceries they need ordered than to just do it themselves. Having access to their Google calendar, grocery list, or to-do list could help ease the burden of communicating their needs. You can pick up their groceries or prescriptions while you are out running your own errands.
- Be considerate of their energy and needs. Check in regularly on how they are feeling when you spend time together, and let them know that if they need you to leave so they can rest, it’s okay and safe for them to say so. If you enjoy giving gifts, think about gifts that will actively make their lives easier, like subscriptions or devices that make their day-to-day tasks easier. Consider their allergies, scent sensitivities, and how functional the gift will be for their specific needs.
- Do your research on your own time. The burden of explaining their condition and how it affects their life can be exhausting. You can show you care and support them by proactively researching yourself so you can be educated about their condition and experiences without burdening them with educating you.
- Avoid toxic positivity. It’s okay to not be okay. You don’t have to always be positive, and when someone is chronically ill, being told they need an attitude adjustment or to look on the bright side can feel extremely dismissive. Sometimes things just suck. Trying to brush over that to avoid negative feelings will just make your loved one feel less important than your own comfort.
Everyone deserves people they can feel safe around, especially when they live at a distinct disadvantage in our society. By challenging your own assumptions and learning to provide support in the way your chronically-ill loved one needs it, you can be a safe space for them.