Inclusivity for Chronic Illness + Disabilities
Inclusivity is a topic that is discussed cyclically in our TuesdaysTogether group for creatives with chronic illness. This is a topic near and dear to my heart for obvious reasons. One of the best things that I am asked when someone finds out about my condition is asking how they can learn to be more inclusive of people living with chronic illnesses and/or disabilities. After discussing and crowdsourcing tips from friends who, like me, live with a broken body, I've started compiling a list of ways to course adjust behavior and attitude to better support and advocate for our community.
I've broken it down into three main buckets: understanding, responding, and leaning in. These are areas where I see the biggest gaps in how we treat people with chronic illness and disabilities. At the end, given that we live in a digital age, I've also included a few tips on how to use social media to be a better advocate.
Understanding
There are nuances and overlaps in terminology. Not everyone who has a chronic illness considers themselves as having a disability, and vice versa. A chronic illness is a condition that lasts for a long period of time, or permanently. A disability is a condition that impairs one’s ability to complete normal daily tasks. The two are not mutually exclusive. To add another layer, not everyone who has the same diagnosis has the same way of defining the impact that the diagnosis has on them. The way my MG impacts my daily life, I consider myself to have a chronic disabling illness. There are MG patients whose normal daily tasks are not impacted by the disease, and only relate to the “chronic illness” label.
Not all conditions are visible, so do your best to reserve judgment and assume the best in someone who is disclosing a disability or chronic illness to you. They are not lying or dramatizing their life, and it takes a great deal of courage to reach that level of vulnerability.
Many people living with chronic illness and disability note chronic fatigue as either a primary symptom, secondary symptom, or a side effect of their medication/treatments. This type of fatigue is not what healthy people know as every-day sleepiness. That’s the type of tiredness that a nap or a good night of sleep can remedy. The type of fatigue we experience is persistent exhaustion that transcends naps, caffeine, stimulants, and good sleeping habits. We lack the energy to such a degree that simple daily tasks can feel insurmountable. This is in addition to the other symptoms we experience.
We can be very sick and also find happiness. We can also rearrange our schedules and prioritize tasks/responsibilities to ensure we can use our limited energy stores on the things that bring us joy.
Responding
Most versions of, “you look great” or “you don’t look sick” are unnecessary and oftentimes can be offensive. Invisibility does not mean that the condition does not exist. And while often well-intentioned, phrases like that are minimizing and denies the experience of the person sharing. Instead: ask if there is anything you can do to help or tell them you're sorry to hear that they are having a symptomatic day.
When someone opens up to you about their condition, avoid the temptation to say something like “at least you don’t have (insert well-known disease here)”. Many of us are grateful to keep any additional diagnosis off of our medical records, and we are already overwhelmed managing the way our bodies are broken. With more than 7,000 rare diseases in the world, there is a good chance that the condition someone dislocating to you that you’ve never heard of before is severe, disabling, or life-threatening with the added bonuses of being incurable and lacking effective treatments. Instead: ask them where you can read more about their condition if you are unfamiliar with it.
Unless you have a medical background in the specialty that covers our conditions, refrain from making suggestions to tweaking our care or lifestyle. It is not that we are ungrateful for your recommendations. For many of us, “fixing” and “problem-solving” is our way of loving. Trust me when I say most of us have tried it all, and then some, under the care of top specialists. Instead: ask them how their treatment plan is going or if there is a way you can help support them this week. Do they need a ride to the doctor? Someone to pick up their medications? A hand to hold during an infusion? A homecooked meal delivered to their doorstep?
Those are 3 ways to avoid sticking your foot in your mouth when talking to someone about their health. Also, know that saying something is usually better than saying nothing at all. Recommendation: if you don't know what to say, you can tell them you don't know what to say. And that you want to acknowledge that so they know how deeply you care. Ask them how you can support them.
Respect our boundaries. If we aren’t ready to talk about something, we can try revisiting the topic at a later time. Emotional stress can be a symptom trigger for many chronic illnesses and disability patients. Recommendation: tell them you respect their boundaries, and are willing to lend an ear when or if they feel ready. Then ask if you can bring over some Ben and Jerry's and a good movie, because who doesn't love a low key night in and a good distraction?
Leaning in
Practice empathy. You can share the feelings of someone dealing with a chronic illness or a disability without comparison or an attempt to draw a parallel. It is inappropriate to try to liken a chronic illness or disability to other health ailments that don’t fall into those categories.
We need support, even when you think we are doing just fine or the newness of our diagnosis has worn off. We are also quite skilled at masquerading as being okay in order to get through our responsibilities. Being sick for years (and for someone like me, decades) can be very isolating. It is hard to continually ask for help over and over again. I still remember when a friend, who had just had a baby, delivered freezer to oven homemade food to my apartment during a very difficult MG season. This was several years ago, and that sacrificial act of kindness when she already was balancing the newness of motherhood blew me away. When I am having a bad day, I think about that and am reminded of how loved I am.
Be conscientious of how you assign value. Try to see us as capable of so much more than inspiration porn. I am always happy to share my story to encourage others to be advocates for our community and to reduce the stigma that surrounds physical health in today’s society. And I also know that my worth is not dependent on whether or not I inspire someone able-bodied. My condition does not define me, but it shapes my life and I hope you can appreciate all the things I do both without pity and without objectifying me. Connect with me as a human, not just an inspiring story.
Keep asking us to do things, and try not to get mad when we say no. Being included without the pressure to participate means the world to us. I promise we are not lazy when we cancel plans at the last minute. It can be hard to predict when we will have a flare or just a bad day.
All of these things take practice, so it is okay to feel like there is a lot to catch up on. Most of us are still learning how to love ourselves well in our own way so we will give you the same grace and patience we also need to give ourselves.
How to Use Social Media as an Advocate for Inclusivity
If you see a friend or loved one share about their health on a status, in a caption, or on a story—acknowledge it. Like it, comment, or share it. Send a little DM saying you are thinking of them or asking how they are doing. See the "responding" tips above to help with knowing what to say/what not to say.
Caption your Instagram stories! It makes your content very accessible to people for a variety of reasons—auditory processing disorders, deafness, etc.
If you have a loved one with a chronic illness or disability, seek out friends and family support groups on Facebook. The resources provided for free in these groups are indispensable.
Do you have tips to share on how to be more inclusive of people living with chronic illness and/or disabilities? Share in the comments below and let's keep this conversation going!