On my seventeenth birthday, I lost sight in my left eye. After a week of treatment, with my sight restored and no news from any tests, that was the end of it…or so I thought. Four years later, after waves of other mysterious symptoms coming and going, I was diagnosed with multiple sclerosis.
I’ve been living with MS for 12 years now (eight officially), and I’ve come to embrace having MS as a part of who I am. With an invisible chronic illness, I’m fortunate in that I get to choose when to tell my story and who knows this part of me—and for me, it’s a part of myself that I am wildly proud of and happy to share.
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Even after all these years, I still find it hard to call myself “disabled.” I’m rarely visibly sick, and my quality of life isn’t consistently impacted to a significant degree. There’s also such a stigma around the word “disabled”—why does it feel like such a yucky word? Especially when there are so many people in the disabled community?
Disability affects one in four Americans, and it’s a community that you can enter and exit at different times in your life. It covers a range of more than 500 physical and mental illnesses and conditions—some that improve and get better, some that are lifelong and some that horribly take lives early.
Even if you are not disabled, it’s highly likely someone around you is, visibly or not.
Knowing how large the disabled community can be—and what a huge range of experiences being disabled can encompass—it’s important to find unique and meaningful ways to reach out to disabled friends. (And yes, it’s okay to call us that.*) But because I can only speak to my own experience, I reached out to friends in Hallmark’s Disability Inclusion Group to ask what is meaningful to them, too.
Below are some tips on how to support people in the disabled community, drawn from friends who live across a range of disabilities: mental illnesses, chronic illnesses, limb differences, neurodivergence and more.
These meaningful moments will be different for everyone, even those with the same disability. Pay attention to what info your friend shares or what topics come up on a regular basis. Even just a general, unprompted check-in to see how things are going can mean the world.
Celebrate and acknowledge personal milestones
Every person with a disability will have different milestones, good and bad. It might take a little while, and even a few awkward conversations, but learning these milestones for your friends with disabilities will mean a lot.
Personally, living with MS, I celebrate my “diagnosis day” because it was the day I got an answer for all the unknowns, and I like to remember how far my body has come since my diagnosis. Not everyone may remember (or want to recognize) their date of diagnosis though.
A friend with a limb difference doesn’t like celebrating her “alive day” (the anniversary of her accident) because it feels sad and a bit traumatic. Sometimes her family will do things that are meant to be fun and distracting on that date, but she doesn’t really want to shout it out. She does, however, really like what she calls her “legiversary,” which is the anniversary of getting her prosthetic after a long battle with insurance. (She even has a friend who makes her cards to celebrate that day!)
- DO make note of milestones they experience or mention and send messages of support and encouragement on those milestones or anniversaries. This might be yearly tests or doctor’s appointments, victories of insurance battles, or even just getting a depression room cleaned. Little things can be a big deal that are worth celebrating! But…
- DON’T worry about making everything a big deal. A quick text can be more than enough to make us feel included, thought of and cared for.
Be authentic in your message and authentic to their experience
For friends with chronic or terminal illnesses, it’s important to think about the disability before saying things like “everything will be okay,” “things will get better” or “get well soon.” There are many conditions that simply won’t get better, and it can be draining to respond appropriately.
During a relapse a couple years ago, I was going to the hospital for IV treatments in the morning and then going to work in the afternoons, IV port still in my arm. The week after treatments ended, with the port removed, a co-worker told me she was glad I was “feeling better.”
While I appreciated the sentiment and knew she meant it from a good place, it was hard to know how to respond since I wasn’t actually feeling any “better.” My legs were still numb, and I had a month of residual side effects from the high-dose steroids ahead of me.
- DO acknowledge what is happening in that moment, realizing that it is indeed a moment and not an “end point.” In the situation above, had my co-worker said “I’m glad you’re done with IV treatments!” or “I’m happy you can leave that part behind you now,” or something similar, that would have recognized the good part of the situation without implying that it was “the end” or “all better now.”
- DON’T be so afraid of saying something wrong that you don’t reach out at all. Believe me, nobody will get it right 100% of the time. Even as a person with a disability, I still don’t get it right all the time. But so long as you’re trying and willing to listen, learn and adapt, you’re doing it right.
Don’t worry about the right time—just reach out
For those with mental illnesses like anxiety and depression, reaching out on the good days is just as important as reaching out on the bad days. Don’t wait for a reason—just send a simple “thinking of you extra today” message and understand that even if you don’t get a response, the gesture means a lot.
One of the side effects of my first MS medication was depression—something I already struggled with beforehand. Reaching out to friends and family (or even finding the energy to respond to their messages) took more energy than I could muster most days.
It seems counterintuitive, but the friends who kept sending me messages—funny jokes, cat videos or “Hey! Been thinking of you!” notes—made me feel less guilty about not responding because it showed they hadn’t given up on me.
- DO know that there are a lot of reasons someone might not respond to your text. ADHD, depression and other disabilities present obstacles in responding and even perceiving time. When you continue to reach out, it helps us know we are not abandoned and are still cared for.
- DON’T relate what your disabled friend is going through to a minor malady of your own. “Oh, I get so tired, too!” or “I’m so OCD about kitchen drawers!” or “Whoops, I’m a little ADD today!” discredits what we go through on a daily basis.
Making plans with busy friends is already challenging enough—but on top of typical scheduling conflicts, your friends with disabilities have important considerations you might not have to think about. Everything from the controllable (the location, the time, transportation) to the uncontrollable (weather, energy levels, anxiety levels) will be a factor.
Helping take care of some of the controllable variables will be an immense help for a disabled friend—and you can go the extra mile by making plans that can adapt around the uncontrollable.
Whether it’s a hang-out or a help-out, find specific ways to be a support.
If you’re meeting in person, consider the venue
Things that might not seem overwhelming to you—crowd size, noise level, how far of a walk it will be from the parking lot to the venue, the heat or cold, etc.—can be massively daunting for people with certain disabilities. Try to take everyone in the group into consideration when making plans.
If your friend uses mobility aids (prosthetics, wheelchairs, canes, etc.), are there accessibility features and handicapped parking if needed? Is the venue outdoors on a hot summer day and you have a heat-sensitive friend? Are there nearby bathrooms for friends with IBS? Is there loud music or big crowds that might be overstimulating to someone with autism or other sensory processing disorders? Will you be stuck sitting at a high-top table or bar seating, which can be difficult for those with prosthetics?
- DO ask your friend if there’s anything you should keep in mind when you choose a venue. Once you have a place in mind, do some online research or call ahead to confirm details that work for everyone in the group.
- DON’T stop inviting your disabled friend, even if they can’t make it most times. We want to be included in the plans and considered part of the group!
Be flexible and understanding about last-minute changes
I used to have this old phone with a horrible battery that would never hold a charge consistently. Some days, 100% would get me 12 hours of life. Some days, I’d only get six. Sometimes the battery would be at 46% and then just…die. Sometimes at 1% battery my phone would run for another couple hours.
This phone has become my metaphor of managing my own levels, mental and physical. I can do the same thing every day, sleep or recharge the same amount of time, and every day is still unpredictable.
So when including friends with disabilities, understand we likely won’t be able to accurately gauge our physical or mental ability to attend until a few days (or hours) beforehand. Understand that cancelling plans doesn’t bring us pleasure (if anything, we feel extra guilty about it) and extend patience and understanding.
- DO follow up with us close to the start of the event if you need to know headcount—but stress that it’s totally okay if the original RSVP needs to change.
- DON’T take it personally, guilt trip your friend or feel the need to cancel if others are involved. We totally understand and want you all to still have fun with the original plans (unless you want to reschedule!).
Help those with disabilities feel more at-ease in social settings
Take the pressure off friends who are socially anxious or not able to read situational cues as well.
Many people with disabilities like autism struggle to both understand and express emotions naturally. People with mental illnesses or disabilities can also often feel a need to “info dump” or overcommunicate to fill space.
Some friends establish hand signals to let each other know when it’s okay to stop talking. Other friends will be especially great at making sure a disabled friend is not interrupted when trying to articulate their own point at a slower pace.
Listening and using straightforward language can be a huge help—a great rule of thumb for a neurodivergent friend is to “say what you mean and mean what you say.”
- DO ask your neurodivergent friends how they are feeling if you aren’t sure. What a neurodivergent person seems to express on the outside doesn’t always match what they are experiencing. Asking can prevent misunderstandings for both of you.
- DON’T rush to offer physical support. If a neurodivergent friend is having a meltdown, shutdown or is struggling, your first instinct might be to stay near them, hug them or “be there” for them, when for a lot of neurodivergent people, that is the last thing they want. The best thing typically is to get away from everyone and all stimulation—but that differs from person to person. You can always ask a friend (when they are not currently in the middle of a shutdown) what their preferred response is.
Research what might be helpful for the challenges a friend is facing
Offering “I’m here to help with anything” or asking “What can I do to help?” puts the responsibility on the person with the disability to articulate their needs, which can be mentally exhausting and overwhelming. Especially on an already-hard day.
If you want to find useful ways to offer support, there are a lot of great resources online—from social media to blogs to support groups. You don’t need to focus on understanding the disability from a medical standpoint but look for information and stories about living life with this disability and what common obstacles can be.
- DO offer specific examples of support. “Hey, I’d like to bring you dinner sometime this week. Can you let me know what day would work best for you?” is a great example of specific support on a flexible timeframe. You can also offer to try a new PT exercise video with a friend, pick up groceries for someone…whatever you can think of will mean a lot.
- DON’T push a friend about specific ways you can be a support when you sense they’re already having a hard day. Asking “Are you sure there’s nothing I can do to help?” will not help us know any better what kind of help to ask for—most times, we don’t even know what kind of help we need.
I won’t go into details (and this is not something I ever thought I’d post online), but there are times when my medicine causes…gastric distress. And let me tell you, there’s no better friend than the one who will pull over in the middle of nowhere for you to find a good tree and share a good laugh.
Be a trusted and safe space for your friend
The best way to show support for anyone with a disability is to be a trusted and safe person to talk to. Let us share details without dismissing them, listen without interrupting and respond without judgment. It can be nice to talk to someone who can relate to what we are going through.
- DO reach out. There will be times you don’t know what to say. But reach out anyway. Be there to listen and don’t rush to fix things. Sometimes there are bad days or there is bad news and we need a friend to sit in that with us.
- DON’T—for the sake of all that is good, please don’t—compare what we’re going through to something your aunt’s-friend’s-sister’s-cousin had. Authentic connections are great, but so is just a listening ear.
Get comfortable with the uncomfortable
This stuff can be embarrassing or uncomfortable to talk about, and maybe that comes from our own internalized perception of disability being a bad thing. But sometimes we need to vent about a bladder problem or other less desirable topics without you cringing or only talking in hushed tones.
This will go a long way in normalizing disabilities. (However, we also totally respect that you might have certain boundaries—so please just tell us that.)
- DO make people feel comfortable so they don’t feel like they have to put on a happy face for you.
- DON’T make every conversation about the disability. Approaching us with immense concern every time you ask “But really, how are you” can make us feel a bit overanalyzed.
Everyone has unique challenges. People with disabilities understand that better than most. That means no matter what you are going through, you can trust those of us with disabilities to be there for you, too.
One more thought…
My disability makes me even more empathetic to what others are going through, that we all have something going on behind the scenes that keeps us from being at 100% all the time. Invisible or not, having a disability is a secret strength—and while developing and maintaining friendships with a disabled person or person with a disability might take a bit more time, patience and understanding, it can be one of the most rewarding and meaningful friendships you have.