February: 10 Ways to Support Your Chronically Ill Friends

We are living in troubling times. Despite ongoing disability rights activists’ protests, House members passed the Americans with Disabilities Act (ADA) Education and Reform Act (H.R. 620). This bill makes accessibility (creating ramps, wide aisles, entrances, and parking spaces, etc) optional for private businesses, thus dangerously hampering and excluding people with disabilities from some hotels, restaurants, movie theaters, and more.

I know I shouldn’t have to reiterate this but people with disabilities face barriers everyday: inaccessible restrooms, inaccessible medical equipment, inaccessible parking lots, inaccessible entrances, and inaccessible tables at restaurants. Instead of fixing those problems, H.R. 620 would force people who have historically faced the most marginalization and discrimination in society to become legal code experts and navigate a byzantine bureaucratic process before being able to assert their rights under the ADA. As a matter of law and justice, businesses owe it to people with disabilities to proactively ensure access — not the other way around.

With unjust reforms to existing policies and the addition of new, dangerous legislation, we have an obvious responsibility over the survival of those around us. I know this is easier said than done in practice.

I am impacted by Lupus SLE (in the kidneys). In my body right now the disease manifests with debilitating joint pain and fatigue (an invisible disability). While I’m in remission and perceived to look great (alhamdulillah), I routinely visit a Rheumatologist, Nephrologist, Ophthalmologist, and Orthopedic doctors — I’ve also got a Primary Care Physician (PCP). Lupus is what I call a gateway disease, in that, it is a foundation or home for other illnesses. In fact, most living with Lupus juggle a few other harmful medical conditions. I developed an irreversible joint disease called Avascular Necrosis (AVN). Because of AVN, both of my hips have been replaced with prosthetic parts (hip replacements saved my life!). I get injections to relieve AVN pain in both knees and am currently in hard conversations with orthopedic specialists regarding next steps for my shoulders and ankles. Shoulder and ankle joints aren’t as easy to replace and if/when replaced, the procedure may not be successful. This means that over time and depending on the rapidity of AVN, I may see myself on the physical disability spectrum again. For the most part I am able to walk and maneuver stairs without aide. Still, there are times I absolutely need to use the escalator/elevator or a hand for support. I bring out my cane as needed.

I am sharing a synopsis of my personal journey for readers to better understand why I am invested in contesting the ways in which we show up, care, and continue to be there for one another. I am also invested in approaching care from an Islamic-faith perspective, wherein wellness requires and is attained through interdependent and communal care. I welcome more faith-based conversations on this.

Here are 10 intentional ways to support your chronically ill and/or disabled (including invisible disabilities) loved ones (extending to acquaintances, neighbors, and others in your reach). Many of us struggle with naming what I’m about to list. Many of us (especially adults with aging parents or those who live alone) struggle with immediate access to support and care. Many of us don’t know how to show transformative, active care, and that’s why we’ve got to learn it! This means I’m learning too. The point is also to shift and revolutionize the way we care and show up for our communities, so feel free to apply these tips in all of your relationships. For those who are chronically ill, be sure to thank your friends and care-takers. Do not take care for granted. Return the love in ways that are easy for you; the words below are reciprocal. Please contribute to this list in the comments.

1. Accompany them to a doctor’s appointment. If your friend is okay with it, sit-in when the doctor is meeting with your friend. Sharing a meal before or after is a plus.
2. Help with grocery/medicine purchases and deliver to their homes. Additionally, support with funds if needed to cover the costs. Gift Lyft/Uber/car ride credits to ease their commutes to doctor’s visits, hospitals, or non-medical related events.
3. Read over and/or help write appeal letters when the medical institution is a pain about offering treatment, health insurance, and medical/medicine costs.
4. Visit them or hangout routinely. This includes the other kinds of hangouts that are not in person (video call, text, etc). Checking-in is crucial.
5. Offer to drive/pick up if you’ve got a car.
6. If they’re comfortable with responding, instead of asking “how are you?,” rephrase by wanting to know more about their treatment process, check to know if they’re taking their medications on time, and how they’re doing emotionally/physically. Become an expert listener, sometimes this is the best you can offer. There is no need to become a doctor or pharmacist and prescribe medications or cures. Instead, make sure they’ve got the necessary medications, tinctures, oils, books, etc.
7. Offer to be an emergency contact when the workplace, school, hospital, doctors, and others are unable to reach your friend.
8. Share songs, movies, and memes to brighten their mood; pictures of cute cat, kitty, sloth, puppy, seal, alpaca, any animal they like; recordings of you verbally sharing words of affirmation and healing with them, that you love them, that you fully accept them and think they are awesome, magical, any definition you are comfortable with.
9. Read and pray together. Share articles, astrology, uplifting messages, etc.
10. Read current articles to learn new developments around disability rights advocacy, especially now when healthcare access in the US is fickle. Find an organization that is advocating for your friend(s) and provides updated educational materials. Donate coins to that organization because many of these groups do research around medications and up to date treatments. Most autoimmune conditions need researchers and research funds. Remember: most autoimmune disease don’t have cures, only precarious, lifelong treatment plans.

Halo hanging out at Sunny Meade Alpacas farm.