Dear Perrie,
I am a few years out of active treatment, and I still have significant post-treatment fatigue. Not looking for strategies to combat fatigue, but more on how to explain it to other people that my “tired” (bone-deep exhaustion) is different than other people’s “tired.” It’s hard, because I also look physically well now and I’m able to “function” well. Advice needed, Perrie!!
Dear More Than Just Tired,
First, I want to validate that your experience makes sense, and you are far from alone in this. So many young adults I talk to share this exact tension: they look “functional” (especially as young adults). Some may even have a habit of pushing through chronic symptoms so they can still participate in regular life, but end up crashing later. This all happens while carrying bone-deep fatigue and the internal battle of managing capacity as an adult. That’s a lot.
One tool that can really help put language to this is Spoon Theory. If you’re not familiar, it’s a way of describing energy as a limited number of “spoons” you start the day with. Every task (like getting dressed, working, socializing, even thinking through something emotional) costs a spoon. Using this framework with others can sometimes help them visualize what it’s like to balance capacity while living with chronic fatigue.
So, instead of saying “I’m tired,” you might say: “I only have a certain number of spoons each day, and I have to choose carefully how I use them.” Or “If I spend my energy here, I might not have enough left for something later. I’ve found that language like this can sometimes help ‘normies’ understand that chronic fatigue isn’t about willpower or effort, it’s about capacity. In my personal life, I’ve even set up a system at home so my husband knows my spoons/capacity that day. I’ll write on the whiteboard or text him how many spoons I have, which helps us adjust our schedule accordingly.
It may also help to pair Spoon Theory with language such as “dynamic disability” and “invisible illness”. Dynamic disability means your abilities are not fixed. Your capacity can shift day to day or even hour to hour, so what feels manageable one day may feel impossible the next. Invisible illness means what you’re experiencing may not be obvious to others. You might look “fine” while your body is working overtime just to function. Together, these terms can help explain why chronic fatigue is so hard for others to see or understand and help to reinforce your limits when discussing your fatigue with others.
Lastly, it may also be supportive to get concrete about what support actually looks like. People often want to help, but don’t know how, having never lived through cancer or chronic fatigue. You might say something like, “It helps when plans are flexible,” “I may need to cancel at the last minute,” “Offering options instead of expectations makes things easier,” or “Low-energy time together still means a lot to me.” These types of statements set expectations and communicate directly the type of support that feels most helpful for YOU. You might need to practice these statements on your own at first, and that’s okay! I’ve been known to have a mirror conversation or two to help myself practice naming my needs.
All that said, there is a hard truth we can’t avoid when communicating our needs: Even the best explanation won’t make everyone understand.
You can do your best to explain your experience. You can offer tools to understand. You can be vulnerable and honest. But you cannot control whether someone truly gets it. What you can control is how you care for yourself in response. That’s where boundaries come in. That might sound like, “I need to head out early so I don’t overdo it.” “I can’t commit to that right now.” “I need a slower day today.” Try not to over-explain, and try not to apologize for having real limits! Boundary work is often easier said than done, because we then have to sit with someone’s uncomfortable reactions to our boundaries. I recommend checking out Nedra Glover, a licensed therapist and author who discusses boundary-setting extensively, as a tool for support.
And as a side note, if you do share vulnerably (which is always optional) with someone and take the time to explain your fatigue, your limits, your reality, and they dismiss it, minimize it, or continue to expect more from you than you can give… that’s important information about the relationship. Don’t get me wrong, some people will meet you there. They’ll adjust expectations, move plans around, respect your limits, and truly care about your capacity. They’ll make a real effort to accommodate your needs and still include you. These types of relationships are worth their weight in gold. And still…. others won’t. Part of navigating life after cancer is learning to invest your energy in the relationships that can honor your reality, not fight against it.
There is also something really powerful in your question. I can tell that you are learning how to listen to and honor your body, name your limits, and advocate for yourself in ways most people never have to. This work is hard, but it’s absolutely vital in reconnecting with yourself after an experience like cancer. I’m really proud of you for doing the hard things!
With you in it,
Perrie 🌵
Ask Perrie is Cactus Cancer Society’s advice column for the questions that young adult cancer doesn’t come with instructions for. Community members submit anonymous questions, and Perrie offers thoughtful guidance, perspective, and practical ideas for navigating life during and after cancer.
