How to support someone with chronic illness
How to support someone with chronic illness
Knowing how to support someone with chronic illness can be difficult. Here are some practical tips and resources on how to help.
Hustling, running, paying bills, staying hydrated, laughing with friends, drinking too many mimosas at the occasional Sunday brunch. Life is happening. Things are good. Then, BOOM. Cancer. Depression. Multiple Sclerosis. Lupus.
Shit.Your friend, your work colleague. Someone you know or love is diagnosed, and whatever it is, it’s serious. Life halts, and your perspective shifts. You feel horrible, scared, and concerned. You want to know how to support someone with a chronic illness, but you have zero ideas on what to say or do.
It’s understandable. No one has taught you how to support someone with a chronic illness. But if there’s one rule you absolutely need to remember when someone entrusts you with the news of their chronic illness, it’s this: Don’t be a dick.
You’d think so, but in reality, a lot of well-meaning people get this so very wrong.
Every one of us has been ill before. Most of us know how to look after a family member when they get something like the flu or Covd-19. This empathy you have to offer support lets them know that you’ve felt their pain and can relate to what they are experiencing. But, in order to empathize, it helps to have a rich understanding of what’s happening to them because you’ve experienced it yourself.
The challenge is how to support and comfort someone when you can’t relate to their debilitating chronic illness.
To be on the safe (i.e., non-dicky) side, check out the advice below. These snippets of wisdom about how to support someone with a chronic illness come straight from the source and pull no punches. Please read carefully, then pull it together and go be somebody’s rock.
Snippets of wisdom on how to support someone with chronic illness
Listen to them talk about their chronic illness
So, the news is out someone close to you, or perhaps someone you just casually know, has just been diagnosed with a chronic illness. As hard as this sounds for many of us, the first (and sometimes only) thing you can do is listen to them talk about their chronic illness.
Chronic illness and friendships are not always good bedfellows. Many people feel isolated when they have a chronic illness.
This is especially the case with people with an invisible illness (i.e., not all disabilities are visible.) This is because sometimes other people simply don’t believe that something is wrong with them unless they can see it with their own eyes. Sure, they may look fine. But their illness is invisible. Simply because you can’t see the symptoms doesn’t mean they aren’t real.
Lorraine Harris, 62, who was diagnosed with breast cancer in 2006, told us that “those friends she appreciated the most,” she said, “were those able to listen to all of my concerns, doubts, and choices while respecting my decisions without judgment.”
When someone with a chronic tells you about their symptoms, just listen.
Validate their chronic illness
One of the best ways to support someone with a chronic illness is simply to validate their experience. As mentioned above, many people feel isolated when they have a chronic illness, especially those with an invisible chronic illness, some of which come with stigma and misconceptions.
Validation is as simple as saying, “I understand that chronic illness can be debilitating. I can’t imagine what it’s like, but I am here to support you in your journey."
Validation is definitely not saying any of the following ableist remarks:
- But you don’t look sick
- You’ll be fine
- At least you’re young
- It could be worse!
- Just push through it
- If you just ate exercised more and lost weight ...
- You’re sick because you are not positive enough
- Everyone gets tired
- Everyone gets aches and pains
- But you don’t look sick
- But you were fine just the other day!
Or if the person is much younger than you, "wait until you’re my age."
That said, it is okay to recognize when a person with chronic illness has a good day and achieves more than they normally do. But, whatever you do, don't tell a person with a chronic illness that they inspire you. They are not your inspiration porn.
Chronic illness and toxic positivity
Beware of the friendship-hurting combination of toxic positivity and chronic illness. In addition to validating their chronic illness experience, it is important to stay grounded in reality. Chronic illnesses, by their very nature, are chronic and may never be cured.
Therefore telling people with a chronic illness to be positive – to wish themselves better – is toxic positivity. Accept that not every chronic illness can be cured.
Some examples of what toxic positivity looks like when talking about a chronic illness are:
- Everything happens for a reason
- You just have to be positive
- You’ll be fine
- In no time, you’ll get over it
- Don’t worry, be happy
- It could be worse
- What doesn’t kill you makes you stronger
- At least you don’t have ________.
Ask about their chronic illness, don’t assume
After all that listening, it’s your turn to talk about their chronic illness. Hell no! A good thing to do is to ask them if they need any help. Trust me, any offer of help will always be appreciated. However, given there are so many different chronic illnesses, and everyone has their own unique experience of the illness, no two people will need exactly the same type of help.
Rather than looking on the internet for ideas, why don’t you just go ahead and ask them what they need? And when they do ask for help, whatever you do, don’t question why the help is needed. Saying they don’t need the help they just asked for, or saying they could do it themselves, is not validating their illness; it is gaslighting.
When asked what kind of Sarcoidosis-related support he desires from friends, Ron Walker, 41, states it bluntly. “If you want to know how to support someone with chronic illness, don't mention shit about my chronic illness and let me enjoy life. And if you want to help me, just ask”. Ron adds a caveat: "if I start talking about my chronic illness, feel free to join the conversation!"
Don’t compare someone's chronic illness to another person
Of course, while some people have no intention of starting a dialogue about their illness, others want to have a two-sided conversation. It’s best not to compare the person to anyone else you know or have heard about with the disease.
Liesl Peters explained that with her chronic illness, “it’s not uncommon that someone will ask about what’s going on. When I try to explain to them that I have inflammatory bowel disease (IBD), I’ve been interrupted several times with comments like, ‘Oh! I totally understand. I have irritable bowel syndrome (IBS).’ While I understand that they’re only trying to relate to me and establish a connection, it feels a bit insulting. These conditions are wildly different, and that needs to be recognized.”
Have great health advice about living with chronic illness
If you have some great medical advice, maybe keep that to yourself…Before you start talking about the caveman diet, veganism, or pineapple juice cleanses, stop and think, “Did anybody ask me for my opinion?” If so, great – forge ahead, my friend! If not, refer to #2 on this list.
“I never felt comfortable being overwhelmed with attention or advice,” says Harris. “I always felt grateful for the time and space to process the diagnosis, medical care, and recovery in my own way.”
The same is true in situations where a person chooses alternative methods of healing over conventional care. Spiritual Health Nutritionist and self-proclaimed “Cancer Kick-asser” Kenda Bell, 48, used a mind-body-spirit approach after her diagnosis in March of 2017. “I didn’t take the traditional medically advised route to heal, so some of my loved ones had concerns,” she says. She stresses that it’s important for family members to “respect [a person’s] choices.” It isn’t your body. It’s theirs.
If you want to know how to support someone with chronic illness do some research
If you want to know how to support someone with a chronic illness, do some research. I know this sounds obvious, but I'll say it again, one of the best ways to support someone with a chronic illness is to do some research about their condition.
It doesn’t have to be a lot; after all, you’re not trying to find a cure or become a doctor. Some people with a chronic illnesses like to talk about what they are experiencing and how the illness affects their daily life. And if they do open up to you, and you have made an effort to do a little research on your own, they will feel more understood. Saying something as simple, “I’ve read about that,” is a welcome gesture showing you care. And you will definitely get bonus points if you can correctly pronounce the name of their chronic illness!
To support someone with a chronic illness you need to show up!
Living with a chronic illness isn’t fun, cute, or sexy. It doesn’t make a great happy hour conversation, and it’s rarely Snapchat or Instagram-worthy. Our “live your best life” culture can be hard to reconcile when someone you love is living through what could be some of their worst times yet. It can be extremely tempting to go ghost. Don’t.
“I never felt alone in my journey,” says Harris. “This gave me peace of mind and allowed me to move forward with confidence and strength.”
Even if you don’t know exactly what to say or do, making yourself available can be a meaningful way to give support. Simply showing up, staying present, and providing quality companionship can go a long way to supporting someone with a chronic illness.
If swiveling, tipping your hat, and metaphorically moonwalking out of someone’s life when they tell you they have a chronic illness is the biggest dick move ever, then standing strong and being there makes you the exact opposite of that. No, not a vagina – a good friend.
It can be frustrating when your friend with a chronic illness constantly has to cancel plans or needs a ride to the emergency room. It’s mentally draining when they’re depressed, and you can barely get them out of bed. They may even be absent for a little while (I’m guilty of this myself). But that doesn’t mean they don’t care about you. No matter what, don’t give up on your loved one.
Carmen R. H. Chandler
Carmen R. H. Chandler is the creator of the online community The Body Temple, where she writes and provides culturally relevant wellness information for women of color.