Forty percent of Americans live with at least one chronic disease, and a third of us live with multiple chronic conditions. If you don't have a chronic illness yourself, you likely interact with people who do.
I’ve lived with lupus and other chronic conditions for over a decade, at times keeping my health problems hidden for fear of being discriminated against or misunderstood. In that time, I’ve learned a lot about how people treat chronically ill folks. For instance: I’ve had a therapist tell me, “You can never be too rich or too thin,” when I lost weight as a result of gastrointestinal problems; and a co-worker complain, “I know she’s sick, but it sometimes feels like she’s just using it as an excuse to be flaky,” about someone with an incurable disease. But I’ve also had co-workers pick me up from emergency rooms late at night and offer to make me meals when I was living thousands of miles from my partner.
Having a supportive network is crucial when you have a chronic illness. But hearing problematic assumptions or intrusive questions is hurtful and exhausting, especially when they come from friends, partners, colleagues, teachers, and well-meaning strangers. So, here's a list of suggestions for how to be a better ally to people with chronic illness, based on my experiences and conversations with friends who have other diagnoses, including Verena Hutter, who blogs about Crohn's. The list is by no means exhaustive, but it's a place to begin if you want to be better about checking your health privilege, if you have it, and supporting those who don't.
1. Able-bodiedness and health are privileges. Recognize that.
2. In other words: Just because you have the physical capacity to do something or live a certain lifestyle doesn’t mean everyone does, so don’t expect them to.
3. Read up on different chronic illnesses, especially those affecting people close to you. Educating friends and family about your condition can be exhausting and annoying when information is readily available. Also, having a chronic illness can make you feel like an alien. Having close ones who know what’s up can be a real comfort.
4. Google is definitely your friend, but make sure that you are checking your sources. There are many scam websites and fad diet books that spread false information to take advantage of people with chronic illness.
5. But don't start acting like you are an expert by trying to educate someone about their condition. They may talk to their doctor more than you do to your BFF.
6. Don't ever question the legitimacy or severity of someone’s illness. Comments like, “I heard that was psychological,” or, “Everyone seems to have an autoimmune disease nowadays,” are extremely insulting. Sit down.
7. Know that not having a diagnosis does not mean someone is faking it. Many chronic illnesses take years to pin down and some symptoms never add up to a neat diagnosis. That doesn't mean that the person experiencing them is not suffering.
8. Keep in mind that even doctors and researchers don't have it all figured out when it comes to chronic illness. That doesn’t mean certain illnesses aren’t real, just that they are not yet classified. All medical conditions weren’t defined at some point—think about it.
9. Just as a rule: Believe people with chronic illnesses! I can assure you that they are not exaggerating. And they are definitely not using their illness to get out of commitments or get attention. If anything, they are probably minimizing what they are going through, especially if they are a woman.
10. Never tell someone with a chronic illness that they look “tired” or “sick” as a way of affirming them. That’s not the kind of affirmation we need, thanks.
11. It's more than OK to tell someone with a chronic illness that they look good. Who doesn't like to hear that? But don't say, “But you look so great!” when someone is telling you they don’t feel well. It’s invalidating.
12. Saying “But you look healthy!” is even worse, obviously.
13. Also, please don’t compliment someone with a chronic illness on weight gained or lost as a result of symptoms or treatments.
14. In general, don’t assume that you know whether or not someone is well or healthy based on the way they look. Many people have chronic illnesses with symptoms you can’t see.
15. Know that just because you've seen someone with a chronic illness be active or take on many projects, that doesn’t mean that they were not experiencing symptoms at that time or that they can constantly keep up that level of activity.
16. Don’t say things like, “But you were fine just the other day!” With some chronic illnesses, there are periods of remission and flares. For others, that distinction isn’t clear and symptoms can fluctuate within short periods of time.
17. Don't demand constant updates about someone's health, even if you’re coming from a place of concern. Diagnosis and treatment often take a long time and constant questions can add stress.
18. Avoid asking someone with a chronic illness whether they plan on having kids. For some, it's an extremely sensitive issue. There are illnesses that make it difficult or even impossible to have children.
19. In that vein, never, ever ask someone with an illness, “What if you were to pass on your disease to your kid?” We can make our own reproductive decisions, thank you very much.
20. In general, avoid questions about how chronic illness affects people's sex lives and relationships. It’s invasive.
21. If you are close to someone with a chronic illness, don't speak about their symptoms in front of them unless you are invited to. Let them do the talking and decide how much they want to share. Plus, you may not actually know what they’re going through.
22. When someone tells you about their symptoms, just listen.
23. Don’t tell that person, “You're going to be OK, I know it!” To some people, that can make it feel like you don’t take their well-founded fears about their future seriously. Better to say: “I’m here for you if you need me. Let me know what I can.”
24. Similarly, resist the urge to suggest thinking positive thoughts or saying that being optimistic is important for recovery. Can we please have feelings?
25. Remember, people with chronic physical illness are at higher risk for depression. So, it’s especially important not to dismiss their emotional responses.
26. This is a big one: Do not try to cure people with chronic illness. Thanks for caring, but unsolicited advice is just that—unsolicited.
27. Listen: Exercise is not the blanket solution to all health problems! Stop promoting it as such. And know that many exercise environments aren’t safe or welcoming to people with chronic illness. Teachers and trainers sometimes push their students in ways that lead to injuries or shame them for not being able to keep up with the rest of the class.
28. But exercise is an important means of symptom management for people. If you see someone with a chronic illness exercising, don’t assume they’re all better.
29. Never shame someone with a chronic illness for taking medications. Being critical of “big pharma” is OK, but there is nothing more annoying than being asked, “Aren't you worried what all these chemicals are doing to you?” about medications that keep you alive.
30. Never, ever suggest to someone with a chronic illness that they should get off their meds and heal themselves with a diet, crystals, or supplements instead. That can be extremely dangerous.
31. Do not poo poo “western medicine.”
32. Do not poo poo “alternative medicine.”
33. Know that different kinds of treatments work for different people and just stay out of it.
34. Avoid advising someone with a chronic illness on which medical professionals they should be seeing. It may be tempting to say, “You have to go see [some rockstar doctor] at Stanford” but be mindful that not all health plans cover visits to random specialists. First, find out if someone has affordable health coverage. Some people with chronic illness are struggling with co-pays. Plus, you shouldn’t assume that HMO doctors or doctors outside of major cities are incompetent.
35. Banish the words “Have you tried...?” Yes, yes we have. Just assume that we've tried everything, from conventional drugs to parsley tea.
36. Trust us: Weed is not a cure-all for everyone and everything. We wish.
37. People with chronic illness sometimes have dietary restrictions. Make note of those that affect the people in your network. If a friend comes over to your house, don't say things like, “I know you said you couldn't eat tomatoes, but you must try this caprese salad!” We’re not playing.
38. If you make a commitment to accommodate someone with a chronic illness, make sure to find out what they need. Don’t say you can put up a friend with arthritis, for instance, and then only offer them a saggy couch.
39. Showing sympathy is really important but please don’t suggest you “know what it's like.” Getting stomach aches all the time is not the same as having Crohn's, and being “low energy” is not the same as having Narcolepsy. It’s just not.
40. Do not shame someone with a chronic illness for needing what you consider too much sleep or for going to bed early.
41. Do not assume that someone can handle manual tasks. “Pizza and beer for helping me move my apartment this weekend!” may sound like fun to one friend but like a nightmare to someone with chronic pain.
42. Avoid putting your friends in a position of having to excuse themselves and remind you—once again—why they can't help you. It .can make someone feel like you haven’t been listening.
If someone with a chronic illness has to cancel last minute, cut them some slack instead of considering them a flake. Symptoms can flare up at any moment.
43. Ask your friends with chronic illness how you can help them. Cooking meals, giving rides, or accompanying on doctors' appointments, can mean the world to those who need the help. This may be especially true for people living alone.
44. Urban and rural areas hold various challenges for someone with a chronic illness. Cities can be hectic to navigate for those who are tired, in pain, and sensitive to noise. Rural areas can be hard to get around for those who don’t have accessible transportation. They are also isolating. Be mindful of this and reach out to offer support if you can.
45. But please no illness-related gifts, unless you are certain that the recipient wants them! Hearing “I got you this massager for your chronic back pain!” can make someone feel like you only think of them as being sick.
46. Don’t assume that people with chronic illness can’t ever hang out! Include them, but if they can’t make your event, offer them alternatives like watching a movie or having a face-time session.
47. Support and respect people who take care of those with chronic illness. Care-taking is a legitimate and important job that often goes under-acknowledged.
48. Assume that you work, go to school, or otherwise interact with people who have chronic illness and act accordingly. Having at least one chronic illness is statistically normal in the US.
49. When scheduling work meetings and socials, ask your co-workers about accommodations. Get to know who, for example, can’t handle noisy rooms or being outside. Find out who needs guaranteed seating because they can't stand for long periods of time.
50. Give people who can’t make in-person meetings alternative ways to get information and participate rather than excluding them.
51. When scheduling meetings, avoid assuming that unusual times are fair game. For some people with chronic illness, symptoms are worst in the mornings, for others in the evenings.
52. This should be a rule in general, but don’t plan work events solely centered around alcohol consumption!
53. Avoid accidentally disclosing someone's diagnosis. Just because someone confides in you, doesn’t mean that they are out at work. It's always better to double check.
54. When you have to accommodate someone with a chronic illness, do not act like you're being put out—no groaning, moaning, or haggling with someone who is asking for accessibility, please.
55. Remember that a request for accommodations is not an invitation to pose countless questions about the illness. Google when you get home.
56. Seeing someone take medication, adjust their insulin pump, or use a cane is also not a good reason to bombard them with questions. And definitely don’t stare.
57. Don’t underestimate co-workers with chronic illness. Many of them are doing their jobs excellently, even when in pain.
58. But don't assume that “treating them the same” is the way to go. It's better to ask. The person with the chronic illness knows best what they are capable of in a given moment.
59. If you are in a managerial position, show that accessibility is a priority. Rather than waiting for employees to come to you with a doctor's note, open the conversation by asking what they need to thrive in their positions.
60. In general, try to make it easy for people to get accommodations. Those with chronic illness should not be the ones always initiating the “Sorry to bother you, but” conversation.
61. Whether or not you’re in charge of a team, be wary of worshipping at the altar of productivity. We should all be less focused on productivity as a measure of success or competence—it's ableist.
62. Teachers: Include the voices of people with chronic illness in your classes. Disability Studies courses are not the only spaces where students should learn to think critically about illness.
63. Make a real effort to not single out students who need accommodations. Don’t let that note from the disabilities office be the last word on how you give access. Talk to your students face-to-face and find out what they need beyond the most basic accommodations.
64. Few things are as demoralizing as hearing a teacher say, “Sure, I'll accommodate you, so long as you know that you won't get 'extra time' in the real world.” Don’t be that teacher! If you are, you clearly haven’t heard of the Americans with Disabilities Act. Also, you don’t actually care about your students.
65. Doctors: Don’t shame your patients or minimize their experiences if a symptom doesn’t qualify as “serious” to you.
66. Women are more vulnerable to illnesses that come with chronic pain and are regularly under-treated for pain. Black patients are routinely under-treated for pain. If you’re a doctor, let that inform how you give care.
67. Therapists: Why are you sometimes giving unsolicited medical advice? Hearing “Have you tried...?” or “This could be psychological...” from you is especially frustrating and counter-productive.
68. Also to therapists: Do not expect your patients to educate you about their illnesses. This takes up valuable therapy time. Remember, people with chronic illness have to juggle many different medical appointments and it’s often not easy for them to make time for therapy.
69. Business owners: Being ADA compliant is the least you can do. Take additional steps to be less hostile to people with disabilities. To you, hard, minimalist stools and flat benches may seem like the height of cool, but to people with chronic pain, they are hell.
70. Bathrooms, bathrooms, bathrooms. If you are a business, clearly mark your bathrooms and do not turn away people who are not customers. No one should have to beg for a bathroom key or disclose that they are having a medical emergency.
71. Call out television shows and movies for using chronic illnesses as stupid plot devices or for comic relief. When you see a show like House treat lupus as a punchline, or movies like The Theory of Everything use illness and disability as Oscar bait, tweet at the producers and actors.
72. Support television shows and movies that tell chronic illness stories responsibly and hire actors with illnesses and disabilities, like RJ Mitte on Breaking Bad and Gaten Matarazzo on Stranger Things.
73. Support cultural institutions that make their art and events accessible via livestream or online. Not everyone can always enjoy art in person.
75. Also, these women have published or forthcoming books on chronic illness. Buy them!
76. Celebrating health is OK. Using language that suggests that lives with illness and disability are less worth living is not. Know that living “a full life” means different things to different people.
77. Be wary of participating in wellness and fitness movements that promote ableist culture by getting their participants to push beyond their “breaking point” and shaming them for failing.
78. If you belong to a fitness community, work on making it more inclusive to people with diseases and disabilities. Ask if your gym or yoga studio makes accommodations or offers special classes.
79. The only yoga class I’ve been able to regularly attend since being diagnosed gave people with injuries and disabilities the option of working on a separate routine, with equal attention from the instructor.
80. Living with a chronic illness is expensive. This can't be understated. Even people who have health insurance have additional financial burdens that can be astronomical. So keep that in mind when inviting people out for expensive dinners or trips.
81. Advocate for universal health care! Remember that thing I said about having a chronic illness being expensive? This would help.
82. Advocate for paid medical leave for all at national, state, and local levels. FMLA only requires that someone be allowed to take off twelve weeks without pay and not lose their job. This is not enough time for many people to go through the process of diagnosis and stabilize through treatment. And people in the gig economy have no safety net at all.
83. Show up in whatever way you can, but never guilt-trip people whose health issues prevent them from doing the kind of activism that’s accessible to you. In our pussy hat, protest-selfie moment, there’s a tendency to idealize in-person activism. Resist the urge.
84 . If you have a chronic illness, support people with other chronic illness and disabilities. Work on building a wider coalition.
85. Be intersectional in your allyship and advocacy. Race, class, gender, geographical location, education level, and other factors are predictors of health. It should come as no surprise that “minorities experience earlier onset of illness, greater severity of disease, and poorer survival.”
86. Research for some chronic illnesses is woefully underfunded. When donating money or time, find out which causes are especially in need of support.
87. And get to know illnesses that disproportionately affect minorities. For example, 90% of patients with lupus are women and the disease is two to three times more prevalent among women of color. Women of color are also more likely to experience serious complications as a result of the disease.
88. Rather than thinking in terms of how people fail to function in our world, think about how our world fails to serve them. A lot of disabilities are disabilities because of a lack of accommodation, as opposed to lack of ability. For instance, someone who has chronic pain in the morning can still do the job, just not in the morning; and someone in a wheelchair can’t access a building only because there is no ramp. I know, take a moment.
89. This may seem obvious, but no one deserves to be ill. No one deserves to be in pain. No one deserves to be without healthcare. Not because of their occupation. Not because of their diet.
90. Actively resist language that puts blame on people who suffer. Hearing, “It’s no surprise she has digestive problems, she doesn’t eat ‘clean,’” or, “If he had taken better care of himself, his symptoms wouldn’t have been triggered by all that stress,” is judgey and unfounded.
91. Resist language that divides people into simplistic binaries like healthy and ill, able and disabled. When you say, “I’m all for the ACA, but it sucks that I have to pay so much for health insurance when I’m perfectly healthy,” you’re basically othering ill people and ignoring the fact that most of us were deemed healthy until suddenly we weren’t.
93. Don’t just avoid all conversations about chronic illness. Pretending that someone with a chronic illness does not have it does them no favors. Instead, ask people with chronic illness how they are doing and let them steer the conversation. Again, tell them you are ready to support them in the way that they need.
94. Be prepared to hear what they have to say even if it's painful and disturbing to you. People with chronic illness should not have to sugar-coat their experiences. Don't expect them to comfort you. It's not about you.
95. Avoid ableist language. Hearing words like “sick,” “crazy,” and “lame” used pejoratively can hurt people with longstanding symptoms.
96. Learn whether the people in your network like inspirational talk. Not everyone with a chronic disease wants to be called a “heroine,” “warrior,” or even a “survivor” when they are just trying to live their everyday lives.
97. In general, do not romanticize illness. It is scary, exhausting, and financially draining.
98. Be prepared to make mistakes and get called out. People are not always going to be patient or generous toward you. They are not always going to be down for a “teachable moment.”
99. Remember, living with a chronic illness is tiring, tiring, tiring.
100. Don't get defensive. Do better. And know that your efforts are appreciated.
Source : https://broadly.vice.com/en_us/article/mb4kzx/how-to-support-people-with-chronic-illness4253