Do you ever get tired of people not taking your chronic illness seriously? If your condition involves chronic fatigue, you might get suggestions like:
Why don’t you take a nap?
Why don’t you just have a cup of coffee?
How about going for a walk to boost your energy?
I understand well-meaning recommendations like these because they can be quite helpful for some people. However, if you’re dealing with a chronic illness like chronic fatigue syndrome (CFS), you can sleep until the cows come home, and you’re still not going to feel well-rested (or at least that’s my experience).
I’ve tried caffeine, and sadly, it doesn’t pump me up. Instead, I feel jittery and shaky, kind of like a low blood sugar episode.
I’ve also tried going for walks or doing other forms of exercise to perk myself up, and I only end up feeling even more tired afterward.
So what can you do? Well, it can be tough to get someone without a chronic illness to understand the challenges you encounter, especially when it comes to low energy. Unfortunately, fatigue is often mistakenly perceived as laziness.
Now, I know some people use their condition to their advantage to try to get out of things they don’t want to do, but that’s not the majority. Most people with chronic illness really do want to get out there and do the things that other people seem to do so effortlessly. They want to earn a comfortable living, take care of household responsibilities, and stay active on the weekends. That can be a tall order for those with chronic conditions who struggle to get through daily activities like preparing meals, showering, and working, even if it’s just part-time hours.
Anyone who has never experienced chronic fatigue cannot begin to understand how debilitating it can be. Sometimes, they’ll reply with “Yeah, I get tired sometimes too.” But their fatigue may be related to a poor night’s sleep, and if they get to bed earlier the next few nights, they feel just fine.
On the other hand, a person with a condition like CFS often feels tired all the time, no matter how much rest they get.
And granted, there are some truly empathetic, compassionate souls out there who try their best to understand what their loved one with chronic illness is going through. But for anyone who’s having a hard time explaining to your friends or family members why you’re often tired and need extra breaks, you might need to be a bit more strategic about how you talk about your condition.
(Note: This post doesn’t cover employment situations where you may need to request workplace accommodations or consider applying for disability benefits. It is focused on interactions with your loved ones regarding chronic illness.)
Compare Your Symptoms to an Illness They Might Have Personal Experience With
I usually describe the symptoms of chronic fatigue syndrome as feeling like I have a case of the flu that never goes away. Many people can relate to having the flu, so they can understand what I’m going through. With the pandemic, many more people have experienced severe COVID symptoms and even long COVID, which shares many of the symptoms of CFS.
Explaining your symptoms in this way can help your loved ones get a better idea of what it feels like to have a chronic illness, instead of thinking it’s just a matter of feeling a little sluggish and needing a nap.
Reframe Your Limitations and Focus On Your Abilities
When you have a chronic illness, it can be hard not to constantly focus on your limitations in life. Understandably, you may be angry or depressed about not being able to live life the way you want and keep up with what your friends and family are doing. But eventually, even the most patient loved one may get a little tired of hearing you say, “I can’t do this, I can’t do that, etc,” and they may even question the validity of whether you can or can’t do a particular thing.
So, how do you reframe your limitations? Start by thinking about what you are capable of doing.
For example, if you struggle to work forty hours a week, think about whether you would be able to handle part-time hours. Perhaps consider a type of work that is less mentally or physically demanding. Also, consider the option of working from home, which can be more accommodating for chronic illness.
After thinking it over, you may even come to the realization that no type of work is accessible to you. And that is the case for some people. But don’t completely write yourself off if you can manage part-time work, even if it’s just a few hours a week. Life doesn’t have to be all or nothing with chronic illness. Do what you can to support a better quality of life without overdoing it or pushing yourself too much.
Be Honest About Your Symptoms
Going back to what I mentioned about not using your condition as a crutch, it’s important to be honest with yourself and others about what you can and can’t do. I’m not suggesting pushing yourself past your limits, but instead asking you to recognize what you have the capacity for.
Notice whether your symptoms always seem to worsen when you are expected to do something you don’t want to do, like working, cleaning, or going somewhere you don’t want to go. Then, notice how your symptoms are when you really want to do something, like going on vacation, attending an event, or dining at your favorite restaurant. If you notice a correlation between your symptoms not bothering you when there’s something you really want to do versus symptoms flaring when you don’t want to do something, then you might be using chronic illness as an excuse to get out of things.
If someone invites you to an outing you’re not interested in, just be honest and let them know you don’t want to go. Don’t use your illness as an excuse in these situations, or people will no longer believe you over time. It’s kind of like the boy who cried wolf.
It’s perfectly okay to say no simply because you’re not interested. Of course, we all have obligations that we can’t avoid. But just like everyone else, with or without chronic illness, you are entitled to decline invites to outings that aren’t truly necessary and/or don’t float your boat.
For example, my sister-in-law adores dancing and has invited me to attend open house nights at her dance school, but I don’t particularly enjoy dancing, so I let her know it’s not my thing. Sometimes, people with chronic illness grab the most convenient excuse and roll with that whenever something comes up that they don’t want to do.
If I were to pull the chronic fatigue card and tell her I’m too tired every time she asks me to go dancing, eventually, she would start to catch on that I’m using my condition to my advantage, and she won’t believe me when I’m legitimately experiencing an energy crash and can’t attend something I’m interested in doing with her.
Advocate for Yourself, Gently
I know that many people with a chronic illness can get very frustrated and even angry when people don’t consider their needs or accuse them of exaggerating their condition. This type of reaction is understandable, but from what I’ve witnessed, lashing out at people or yelling at them gets you nowhere and can even make people less likely to show you compassion. But that doesn’t mean that you ignore your needs for the sake of keeping the peace either.
Instead, I like to practice what I consider gentle self-advocacy. For example, I am prone to social hangovers after outings—sometimes referred to as introvert hangovers—even though I enjoy spending time with my loved ones. For that reason, I avoid scheduling get-togethers on consecutive days whenever possible (vacation is an exception).
If someone invites me to hang out on a weekend when I already have plans one day, I let them know I’m unavailable because I need downtime. Most people are understanding—some think it’s weird or lame. I don’t get mad if they don’t get it. I just stick to my guns, knowing I’m protecting my energy, and I’ll feel better for it.
If you have physical limitations due to a chronic illness, you can practice gentle self-advocacy in several ways.
If your friends want to go to a concert, you can let them know that you would like to join them but would need reserved seats rather than general admission. Or if they want to go on a hike, suggest a trail that is manageable for you instead of the more advanced trails with steep climbs.
When it comes to vacations, you can let your companions know you’ll need some time in the middle of the day to duck out for a nap to recharge. If you’ll be visiting historic sites or botanical gardens, give them a heads-up that you may need to sit on a bench and rest from time to time.
Gentle self-advocacy often works well but if your friends really want to push to the front of the crowd to be close to the band, you can either skip the event or see if anyone would like to get seats with you and you could meet up with the rest of the group for dinner before or after the show.
The idea is that you’re advocating for your needs while also understanding that there will be times you may need to decline an invite or do your own thing.
I have some family and friends who enjoy intense hikes, and as much as I love being out in nature, I know that will stretch me beyond my capacity. I did manage to climb the Cascade Mountain with my brother and husband years back, and I honestly still don’t know how I managed to do it. But today, I plan alternative times to do nature walks or easy-to-moderate hikes, depending on how I’m feeling, so I still get to spend time with my loved ones out in the forest.
Let Them
In closing, I’ll bring up a phrase from Mel Robbins, one of my favorite inspirational speakers. Basically, if someone doesn’t want to take your chronic illness seriously, “let them.” Realize that you can’t control what they think, and it’s not your responsibility.
Focus on what’s within your power: taking good care of yourself, recognizing the difference between not being able to do something and not wanting to do something, and advocating gently for your needs. Your mind and body will thank you.
