You already know that living with a chronic illness comes with a slew of new challenges, one of which is navigating your relationships. You may find that people you thought were always by your side are less available during one of your flares, or that the cheerfulness you always loved about your best friend feels more like toxic positivity when it’s directed at your symptoms.
In many cases, people who make insensitive remarks are well-intentioned but poorly informed. There may, however, be certain scenarios in which you need to reevaluate the place someone has in your life. Remember: You have the right to put your own well-being first.
“This experience is ubiquitous,” says Kim Gorgens, PhD, Clinical Professor and Director of Continuing Education at the Graduate School of Professional Psychology at the University of Denver. “The priority is always your well-being, but that can be hard for someone who maybe feels shame about time and resources being invested in their care. You get messaging sometimes that says you are not the priority — and sometimes you have to remind yourself that the experience is not uncommon.”
In addition to prioritizing your own well-being, it can be difficult to let go of certain relationships, however toxic they may be. This is especially true when someone has held a place in your life for a long time.
“I had to walk away from several friendships,” Brenda K., a CreakyJoints community member, shared on Facebook. “Sad to say, they were long ones. I had to endure hearing about all their woes, but when I would share, it was like talking to a wall. My circle is much smaller, but more supportive.”
It’s true: Although it’s difficult to let go of certain relationships, you’ll likely find that your support circle is much stronger when you prioritize the healthy relationships in your life. Here are some subtle signs that may signal a lack of support from your loved ones, as well as ways to talk to them about the problem and when to distance yourself from someone when things aren’t getting better.
What a Lack of Support Looks Like
Lack of support isn’t always intentional, but it’s important to know what it looks like. Here are the different types of friends and family you may encounter if you live with a chronic illness, and what their remarks and actions may mean.
The Person Who Asks You to Do Things You Can’t Do
This is a common behavior. Let’s say a friend keeps asking you to sit down when you have arthritis and neuropathy, or a family member keeps pushing you to go biking with them even after you’ve told them it’s too painful for you.
“That indicates an insensitivity and may also be them implying that you are making up or exaggerating in terms of your limitations,” says Barbara Van Noppen, PhD, LCSW, Vice Chair for Faculty Development & Clinical Professor of Psychiatry and Behavioral Sciences at Keck School of Medicine of USC. “I think people tend to assume it’s in someone’s head and they should be able to get over it, especially when it’s an unseen illness or disability.”
It’s something members of the CreakyJoints community agree with. “I find the problem is people don’t understand quite how serious a condition it is. I feel some people don’t care what’s happening to me, but they really just don’t know how bad I am suffering from rheumatoid arthritis,” says Karen H.
“Most people want to see proof and that’s disappointing,” says Kristina H.
This type of person might also make statements like “everyone gets body aches” or “everyone feels tired,” which can feel very minimizing.
“What’s really behind those kinds of comments is often fear and a sense of a loss or grief that they are missing out on activities that they can’t do with their loved ones,” says Dr. Van Noppen. “Often people can seem angry or get hostile when they’re really fearful.”
The Person Who Makes Ableist Remarks
Ableism is essentially discrimination against disabilities Sometimes ableism can be very obvious, such as environments that are not accessible to people with disabilities (buildings without ramps for wheelchairs, for example). Some ableist language can also stand out and may be easier to flag and fix, such as phrases like “dumb,” “crazy,” “turning a blind eye,” “falling on deaf ears,” “being psychopathic,” or “acting bipolar.”
But many aspects of ableism are much more subtle and challenging to address because they’re so pervasive in our society and culture. For example, people who use the accessible bathroom stall when they are able to use the non-accessible stall without pain or risk of injury. Additionally, assuming people have to have a visible disability to actually be disabled (which is often the case when it comes to chronic illnesses.
Ableism can also commonly come in the form of inconsiderate assumptions. For someone with a chronic illness, that may be someone making a simple assumption like: “We’re all going to go on this big hike,” or “We’re all going to stay out late for drinks and dancing tonight.”
“In this case, there’s no sort of understanding that it might not be possible for you and you might be left out,” says clinical psychologist Laurie Ferguson, PhD, Vice President of Research and Education for the Global Healthy Living Foundation.
It’s surprising that ableism still has such a large presence in our culture, especially when you consider that 61 million adults in the United States live with a disability — or one in four, per the U.S. Centers for Disease Control and Prevention. That’s where educating your loved one comes into play (more on this below).
The Person Who Exhibits Toxic Positivity
It can feel like a dagger to hear “You don’t look sick.” or “Just try not to think about it, and you’ll feel better.” This is probably coming from a place of good intentions, albeit ignorance.
“I think often this is somebody who thinks they’re being helpful,” says Dr. Ferguson. “It’s often because a person themself doesn’t have the experience of pain and they don’t have the imagination or empathy to understand what’s going on with someone else. Or they don’t want to feel dragged down by it, so they try to override it.”
This doesn’t always come from a lack of support, but it can come from not understanding that just thinking positive doesn’t help with symptoms.
You might also hear a version of this: “My cousin has that, but it’s so much worse.” Of course, that can leave you feeling dismissed and minimized.
“I think that some of this comes from a need to deny that things can be really bad,” says Dr. Ferguson. “If someone has a loved one who is ill or struggles with chronic illness, that person should really discipline themselves to not override the person or try to be positive — but instead to really listen and feel what’s going on with that person.”
The Person Who Drains You of Energy
Sometimes, it just comes down to intuition: If you feel dragged down or less cheerful after spending time with someone, it may be time to reevaluate if they should have a place in your life.
“It’s very subtle, but it’s a feeling you get inside yourself,” says Dr. Ferguson. “Your intuition just says, ‘I don’t feel like this person gets me.’”
Perhaps you tell someone about a symptom, you explain how difficult a doctor’s appointment was, or you’re not able to follow through with plans. If you get a feeling of cluelessness or even a bit of disapproval from that person — as though they think you should push yourself a little harder — consider it a red flag.
Of course, sometimes the lack of support is more apparent. That’s when it’s certainly time to consider distancing yourself from that person.
“A family member complained to me yesterday that ‘you’ve been sick a lot this year… there are so many times when you don’t feel well,’ as if I’m ruining all the fun. It really hurt. And I was just diagnosed in August 2020 after many years of symptoms,” says Chris B.
The Person Who Always Gives Their Expert Opinion
By now, you know you can’t eat your way out of your arthritis diagnosis, yet there’s no shortage of people who want to tell you to get rid of gluten or sprinkle turmeric on everything because it helped so-and-so feel so much better. And the longer you live with chronic illness, the more of these “solutions” you encounter — and the more frustrating they get.
In today’s world of readily available information, it can be easy for everyone to feel like they have a certain amount of expertise about your chronic illness. This doesn’t necessarily reflect a lack of support — in fact, it can often show someone is investing their time in trying to help, even if it comes off the wrong way.
“If you reframe the intention in your mind from complete annoyance to well-intended but annoying, it can take a little sting out of it,” says Dr. Gorgens. “Remembering that it’s well-intended increases your patience and your ability to deflect it in a really benign way, versus responding with irritation.”
Deflecting it may be as simple as saying: “Thank you so much, send me that info.” If it really does bother you, though, you can always tell your loved one that while you appreciate their efforts, it would be even more helpful if they accompanied you to a doctor’s appointment or helped carry groceries inside.
Sometimes, telling someone exactly how they can help goes a long way. People typically want to feel useful, so don’t feel shameful about asking family and friends for specific favors, the American Psychological Association suggests.
The Person Who Excludes You
There’s a continuum to consider here that’s benign (but irritating) on one end and risky on the other. For instance, if someone plans an event in a public space that you’re trying to avoid because you’re immunocompromised and may not have had a full response to the COVID-19 vaccine, their behavior may be irritating but ultimately just absentminded.
“Responding first with some education is a good way to approach it,” says Dr. Gorgens. “For instance, you could say, ‘I think we’ve talked about this, but I can’t do X, Y, and Z.’”
If the person altogether excludes you from planning or events, try talking to them before you write them off altogether.
“You could start by saying, ‘Hey, there’s a way we can do this that would work for me, and I think would work for the rest of the group. Here are some ideas,’” says Dr. Gorgens. “Start on the education side with that person. Of course, the shame of it all is that the ball falls in the court of the person with the illness to provide the education.”
If someone doesn’t take what you’ve told them into account and moves to the side of the continuum that jeopardizes your well-being, it’s time to start creating distance from them. This is the person who may invite you to plans in crowded spaces without giving you a heads-up that the situation may be unsafe or unsuitable for you — or who may misrepresent their vaccination status and come over to your house unmasked.
“You may make a determination that they’re really not trustworthy and you can’t rely on them to have your well-being in mind,” says Dr. Gorgens. “It’s important to realize your right to exclude them in whatever way. You get to prioritize your well-being.”
How to Talk to Someone Who’s Not Being Supportive
A lot of times, enlightening an unsupportive friend or family member can be as simple as giving them direct feedback or offering more information about your condition. Here’s how to start a conversation that is beneficial for both you and your loved one.
Use “I” instead of “you” when possible
To avoid coming off as though you’re blaming your loved one, try framing feedback like this: “Sometimes I feel really alone with this. I’d really appreciate it if you were reading or sitting with me and looking at this website. I’d love the opportunity to explain a little bit more to you what I’m going through. That would mean a lot to me, because our relationship means a lot to me and I feel like there’s now this distance that we have.”
Focus on your feelings and how you’re experiencing them. “I think people can hear those a lot better than if you were to say ‘You don’t support me’ or ‘You don’t understand,’” says Dr. Van Noppen. “Those come off as accusations and people tend to get defensive.”
Gauge their interest and comfort level
If someone has never asked you about your chronic illness, it may seem like they’re not interested — but it could also be a sign that they feel uncomfortable bringing it up because it’s such a personal topic.
When you suspect your loved one doesn’t know how to approach the topic, Dr. Ferguson recommends broaching the conversation by saying, “I’m wondering if there are things you’d like to know about how this is for me, and I’d be glad to talk about it. It’d be helpful for me if you understood some things.”
If your loved one shows they’re not interested or acts dismissive after you offer to share more, that shows it may not be someone you want to have close to you long-term. “Good friends stay and learn,” says Shelley L. “Removing yourself from toxic environments is key to lowering stress and symptoms.”
Give direct feedback
If your loved one keeps telling you “Cheer up, it isn’t that bad,” or “If you keep talking about it, you’re going to feel worse,” don’t let those remarks fester. Instead, immediately give feedback in that moment, such as: “Sometimes when I hear that, I feel like my feelings are being dismissed. It would be really helpful to me if you could just say, ‘I am really sorry it’s a bad day.’”
This is often just a matter of giving your loved ones the appropriate language to use. “Sometimes, you have to train people because we are a culture of ableist deniers, so you have to give them language for what would be helpful,” says Dr. Ferguson.
You can also send them an article (like this one) on how to have effective conversations or offer other resources that can shed light on your situation.
When to Remove Someone from Your Life
When you find someone simply isn’t receptive to conversations about your experience or puts you at risk through their behavior, it’s likely time to remove them from your life.
“Our relationships are part of what’s good medicine,” says Dr. Ferguson. In fact, you can think of your relationships in three categories:
- Good medicine with no side effects: These are people who bring good things into your life without taking things away. They leave you feeling energized and happy — and you want to spend a lot of time with them. “My fiancé is my rock. I couldn’t have made it this far without the people I love. They pick me up (literally sometimes) when I’m down,” says Kim A.
- Medicine with side effects: These are people you don’t want to remove from your life, but you should watch how much time you spend with them. They might make good-intentioned but ignorant remarks or try to include you in plans while forgetting to check in on your needs.
- Toxic drugs: These are people who really aren’t good for you. They are the friends or family who may put you at risk by intentionally fibbing or concealing information. They are also the people who leave you feeling drained after spending time together.
“I think it’s up to each person to really be aware of the effects of that relationship — including what it costs and what it offers to be in — and to have some good healthy boundaries around it,” says Dr. Ferguson.
If you find someone who falls into the “toxic” category and it’s time to remove them from your life, you can do so in a number of ways. It doesn’t necessarily need to be a dramatic break.
“There are lots of ways to go about it,” says Dr. Ferguson. “For some of us, it’s just that you stop going out with them and you’re busy when they call you. Or if you’re the person who always makes the calls, you stop calling them and see if they reach out to you. Sometimes you just allow the drift to happen.”
If the person is consistently in touch with you and you don’t want to be in touch with them, you may need to say something direct but simple, such as: “You know, this relationship just isn’t working out for me really well.” If it’s a family member, you might start to put boundaries around how much time you spend with them — perhaps by not visiting as frequently.
“It can also be really helpful to enlist allies in your family to help buffer you,” says Dr. Gorgens. “For instance, you might say, ‘My sister Meg is going to field John’s phone calls from now on. I can’t get involved in his planning because I just don’t have time to deal with that kind of drama.’”
And of course, if you don’t want to remove someone from your life entirely, there are many other ways to get the support a given individual isn’t offering you.
“It’s sort of like any relationship — we take the good things,” says Dr. Van Noppen. “I think individuals with chronic illness have to be careful with their expectations because not everybody is going to be that sensitive shoulder. That’s why support groups, blogs, and reaching out with others in that community is really critical.”
You can also enlist the help of a mental health professional who works with patients and families struggling with chronic illness, particularly if it’s a close family member you can’t cut out of your life. There are even support groups for family members of individuals with chronic illness that may be helpful for your loved one. Support groups (like CreakyJoints) help you or family connect with others who are going through similar situations, helping to reduce feelings of loneliness, isolation, or judgment, per the Mayo Clinic.
Remember, in most cases, people aren’t trying to be hurtful. That said, they may need a little help learning about your situation or coping with their own emotions.
“A lot of times, it’s about ignorance when people make comments because they’re not well-informed,’ says Dr. Van Noppen. “Or they might be fearful, and there could be other emotions behind those insensitive behaviors.”
Focusing on the positive relationships in your life — and on the people who are willing to learn — can make a significant impact on how supported and valued you feel.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Disability Impacts All of Us. Disability and Health Promotion. U.S. Centers for Disease Control and Prevention. September 16, 2020. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html.
How to help a friend or loved one suffering from a chronic illness. American Psychological Association. 2011. https://www.apa.org/topics/chronic-illness/help.
Interview with Kim Gorgens, PhD, Clinical Professor and Director of Continuing Education at the Graduate School of Professional Psychology at the University of Denver
Interview with Barbara Van Noppen, PhD, LCSW, Vice Chair for Faculty Development & Clinical Professor of Psychiatry and Behavioral Sciences at Keck School of Medicine of USC
Interview with Laurie Ferguson, PhD, a clinical psychologist and vice president of research and education for the Global Healthy Living Foundation
Support groups: Make connections, get help. Mayo Clinic. August 29, 2020. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655.