When I was in college, a group of friends and I decided to go for a hike one Saturday morning. We planned out our transportation, schedule and hiking route. I loaded up my backpack with plenty of water and sunscreen, and did everything I could to prepare for the trek. But when we made it to the trailhead around 8 a.m., I could tell I was in trouble: there was zero shade on the trail and the temperature was already in the 90s.
Less than 20 minutes into our hike, and I was starting to feel funny. I knew I could push myself to press on, but it would probably make me sick for days to come – and with a new semester beginning, I just couldn’t afford that. As difficult as it was, I told them I couldn’t continue, and because they didn’t want to leave me stranded in an unfamiliar place all by myself, they begrudgingly turned around with me, and we headed back to campus. Though I greatly appreciate them accompanying me, I was not the most popular person in our group that day.
Deciding between what’s best for your health and what’s “popular” with those around you may not always be easy, but for those with chronic illness, it is especially important. Putting yourself and your own self-care first can be helpful in managing your chronic illness as well as any mental health struggles you may face.
Some may find it stressful and upsetting to make “unpopular” decisions that frustrate friends or family, while perhaps there are others who couldn’t care less how “popular” their health-related decisions are. Whether you fall into one of these two camps or somewhere in between, know your feelings are valid and it is always OK to put your health first.
We wanted to help the loved ones of those with chronic illness better understand why they do the things they do, so we asked our Mighty community to share one “unpopular” thing they do for the sake of their health. Before becoming angry or put-off by the actions of someone with chronic illness, consider what they’re experiencing and why they might have made the choice they did. It never hurts to spread kindness instead of judgment.
Here’s what our community shared with us:
1. Canceling Plans
“Canceling plans. I’ve lost so many friends because of it. I wish people understood that’s it’s not because I don’t want to be there and take part, it’s just my health kind of makes all my decisions nowadays.” – Hmarie H.
2. Using Controversial Medications
“I use cannabis as my main medicine to manage multiple sclerosis. It is effective on my pain, depression, lack of appetite, insomnia, overall well-being and so much more. It is a very controversial subject, but the research is there and more importantly I know it helps me have a quality of life.” – Jessica L.O.
“I take an opiate pain medication and I get criticized about it from people in my life who don’t understand that the medication doesn’t take away all the pain but makes it so I can function better than without it.” – Letia N.
3. Saying No and Setting Boundaries
“One of my self-care strategies was learning to set boundaries and say no to people who were accustomed to me saying yes to things all the time. People don’t like change and don’t like boundaries, but self-care is health care.” – Sarah N.
“I turn down opportunities for social engagements left and right (sometimes work-related engagements like a dinner or retreat for everyone in the department). It is sometimes seen as ‘lazy’ or ‘anti-social’ or maybe just that I am making a vague, [silly] excuse not to participate. It’s not always something I’m happy to do, but I’ve learned that my body’s need for rest has to trump all else.” – Mikhaile S.
“Respecting my limitations, telling people ‘no’ when I’m reaching my limitations and educating others while asking them to respect me and my limitations. People don’t like it when you say ‘no’ and communicate what you need and why. Because if they push over you and your boundaries, they can’t say they didn’t know because you properly communicated… and did it consistently.” – Lyd T.
4. Avoiding Alcohol
“I don’t drink alcohol. Ever. I need to give my liver as much support as possible because of medications I will be taking for the rest of my life for my chronic illnesses.” – Brandi S.
“I don’t drink. No alcohol at all. Even a little sets off a flare and a migraine.” – Jessie L.S.
5. Not Keeping Up With Personal Hygiene
“Not showering daily. I wash the important areas daily but taking a full shower is beyond my energy levels. I also wash my hair once every five days or so. I don’t have oily skin so my hair never gets that ‘greasy’ look. Raising my arms aggravates my shoulders so I try to minimize how often I do that. I still smell clean but many people get grossed out at not showering daily.” – AnneMarie G.
“Letting my personal hygiene suffer. When any little thing can drain your energy or send you into a flare, you have to determine what’s most important to you. Showering, shaving my legs and the like are sometimes so exhausting that I have to skip doing them more often than others would deem appropriate.” – Megan E.M.
6. Sleeping Frequently
“I was all about the push and crash making myself so sick I would be in bed for days if not weeks. Now I rest when I need to. I am seen as lazy, but it is what I need to do so I can get things done.” – Susan D.
“I go to bed early. I am usually exhausted by 8 p.m. and need extra sleep. I’ve always gotten made fun of for this.” – Olivia R.
“I sleep. Every single second that I’m not doing something or have to be somewhere, I’m in bed. Non-weight bearing is the only position I’m comfortable in. I never shirk on my duties and responsibilities, but as soon as I’m done, I’m in bed. My husband and daughter understand completely. And it doesn’t really matter what other people think. That’s the least of [my] concerns!” – Amy C.
7. Having Particular Eating Habits
“Eat relatively junk-type foods. I’m at such a low weight, along with a strong lack of appetite, that right now, all I need to do is pack on calories, any way possible. So when I eat that whole cake for dinner, instead of something balanced, just know it’s about getting as many calories as possible without having to eat as much. Once I get to a healthier weight and my appetite comes back, I can focus on better eating. One step at a time though. What’s unhealthy for some, may be exactly what I am directed to be eating by medical professionals.” – Jo M.
“I eat a gluten-free diet and 99 percent grain-free as well, and for some reason, that just really grinds some people’s gears. I mean, it’s my body and my health and I’d gladly trade you bodies and then feed you bread so you can know what it’s like, but since that can’t happen, let me do what I need to do to be in the best health possible.” – Sara W.
8. Not Being Able to Help With Physical Tasks
“I can’t help carry things for get-togethers, everyday tasks or when I’m gigging. I’m a musician/singer. I basically have to sit down and watch everyone else carry things around which makes me look lazy and unhelpful. But until I have surgery to remove these cysts/endometriosis, I can’t do much of anything. I currently have a stent in to keep my kidney draining and if I move wrong or lift something I end up in severe pain and bleeding. I hate not being able to do my share of the work, but if I try to help I just end up hurting myself.” – Candie A.
9. Using Alternative Therapies
“I use alternative therapies, like acupuncture, massage and chiropractic, along with herbal supplements. A lot of people see these things as fluff, luxuries or just silly, but they are typically not people who suffer chronic illness or pain. I still take my prescription meds and visit my doctors regularly, but unless you are faced with the reality that you are going to be dependent on certain medications *for a lifetime*, it’s probably much easier to judge my decisions about what works for me.” – Mikhaile S.
10. Needing to Adjust the Temperature
“I am super sensitive to temperature so my constant need to adjust the heat, air conditioning, fan, add or remove layers of clothing or even get ice on my neck to cool myself down can be tricky.” – Bethany C.E.
11. Bringing Your Own Food to Gatherings
“I tend to bring my own food to family/group gatherings. Unless I can absolutely trust the food and the person who made it, I’d much rather bring my own and know I can eat safely.” – Courtney M.
12. Not Allowing People Into Your Home, or Not Going Into Others’ Homes
“I rarely ever have people over at my house – friends, family, my children’s friends, etc. It causes so much stress for me with all the extra noise and visual stimulations and trying to entertain people all the while trying to make sure my house isn’t getting destroyed. People think it is rude and unwelcoming, but every time I have people over, my pain escalates exponentially and it just makes a bad situation worse. I have too much pain and sensory issues to handle it, and every time I try to do it, I pay for it for days afterward. Not worth it.” – Tonya M.W.
“I don’t go into people’s houses that have animals. I also don’t allow people to get into my car or come into my house if they have any perfume on. I have asthma and pets and perfume will make me really sick really fast. I wish people would be more accepting of this. Some people are extremely rude about it. I wish they could see it from [my] point of view. I wish they could see what it’s like to not be able to breathe for weeks because of their pets or perfume. I have had people stop talking to me because of this.” – Vienna L.
13. Being Realistic About Your Health
“Coming to perfectly frank, matter-of-fact terms with my future. I’m still driving and going to yoga and tagging along when my parents go shopping, but in a few years, I won’t be as capable. So I’m in the process of getting a service dog. Everyone is like ‘you don’t need a wheelchair! If you keep saying you’re going to need one, you will need one!’ No. I’m going to need a wheelchair no matter what I do. I’m going to need a service dog no matter what I do. I’m just deciding to train the dog while I’m still strong enough to do it so he’s ready when that day comes.” – Jaque V.
14. Not Being Able to Go to Crowded Places
“I can’t go to bars, clubs, movies or anywhere where there are a lot of people. It’s not that I don’t want to go out, it’s that my body can’t handle the noise, smoke, vibrations, etc.” – Rebecca R.
15. Staying Home or in Your Room
“Leaving my house. Even to go see my kids. My husband and kids don’t get how uncomfortable I am away from home. Physically and mentally.” – Kim H.P.
“Isolate myself for recharge.” – Liz W.W.
“I stay in my room so people don’t see my symptoms and judge me.” – Shannon M.
“Basically turned myself into a hermit. I don’t go out unless I have to.” – Kelli K.
16. Not Being Able to Travel
“I try to avoid traveling, even just going an hour away is super hard on my back. I will do it if I’m going to visit someone for a few days and we don’t plan on doing anything but hanging out.” – Ashley C.
17. Opening Up About Your Health
“I share my struggle with my body and chronic illness honestly on social media. A lot of people would rather I say nothing, regardless of how I’m feeling. I just think it’s so important to raise awareness and make sure no one else feels alone.” – Angela H.