Ask Perrie: More Than Just Tired

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.

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Ask Perrie: Reclaiming Your Voice

Dear Perrie,

How do you advocate for yourself at doctors’ appointments and hospitals when you have been failed by the medical system before? (ie. missed diagnosis and now new problems are arising….)

Dear Reclaiming Your Voice,

This is such an important question, and I’m so glad you asked it! The truth is that many young adult cancer survivors experience medical mistrust. In the U.S., it’s not uncommon to encounter providers who are burnt out, overworked, and treat patients like numbers rather than people. Missed diagnoses, medical gaslighting, and difficulty trusting the system again are, unfortunately, experiences I have heard from many other young adult cancer survivors.

Despite that, we still have to advocate for ourselves. Recognizing and validating the real barriers and emotions that might get in the way is an important first step. Pushing through with a toxic positivity mindset isn’t very sustainable and can often leave folx feeling even more frustrated than before.

If you find yourself shutting down during appointments, you may need a way to come back into your body and stay present, using tools like mindfulness, fidgets, note-taking, or asking for follow-up appointments. If you find yourself overwhelmed, triggered, or angry in these appointments, you may need to practice deep regulation and communicating your concerns, even when big feelings are in the room.

A helpful tip, in any situation, is to start keeping an organizational system. You likely have access to a virtual chart, and if so, I would practice reviewing your medical notes, labs, and visit summaries before appointments. I’ve recommended to people in the past to have their own medical binder or notebook. But really, you can grab any piece of paper or even the notes section of your phone and jot down your thoughts and the top 5 questions you want to address in your next appointment. Organizing yourself this way can help you stay grounded in what is most important to cover in your appointments, even when you are feeling overwhelmed, scared, or tapped out. 

It can also be incredibly supportive to bring someone with you to appointments when possible. Having a support person can be another great grounding tool and a way for someone to have your back when you need to speak up for yourself. If it’s not possible to have a support person, you could also ask permission to record doctors’ appointments so you can listen back to them later. Recording offers a way for you to review information and return to it, a helpful strategy if it takes time for you to process information. 

It’s also completely okay to ask your provider to slow down. If something is confusing, or they are using a term you don’t understand, it’s okay to ask, “Can you explain that another way?” or “Can you walk me through your thought process as to why this test is the best option, or this other option isn’t a good idea?” Asking providers to clarify their reasoning and thoughts can help you to better understand your care and give you the opportunity to notice if your concerns are being taken seriously. If you find that you are consistently being dismissed, even after you’ve spoken up, then it might be time to pivot.

An important part of self-advocacy is remembering that seeking a second opinion or switching providers is not offensive; it is an act of prioritizing your needs. After all, this is your health! This is a normal and reasonable part of medical care for young adults with cancer or complex medical histories. Seeking another perspective or giving yourself permission to find a new doctor with whom you develop a better relationship does not mean you are difficult; it means you are taking your health seriously. 

Finally, I want to acknowledge that rebuilding trust in medical spaces can take time. If you find that you are still struggling, I want to gently encourage you to reach out for therapy, community support, or other spaces where you can process these experiences. Medical trauma is real, and you deserve support in navigating the impact it may have had on your relationship with healthcare. Advocating for yourself does not mean you have to be perfectly confident or fearless. Sometimes it simply means showing up, asking the question anyway, and reminding yourself that your experiences in your own body matter.

You deserve to be heard. You deserve to be believed. And you deserve care that takes you seriously.

In your corner,
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.

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Ask Perrie: Got Big Questions

Dear Perrie,

How do we cope with the major fear of recurrence for the rest of our hopefully long lives?

How do we choose a career where we do not want to waste our time and be fulfilled, but also gives us the stability and health benefits, especially after experiencing such a traumatic part of our lives?

Dear Got Big Questions,

I’m going to do my best here to be a supportive place to land with these concerns, because they are some heavy and really common concerns among YA cancer folks. First, I want to name something important. Fear of recurrence is a huge part of young adult cancer. So much so that research consistently identifies it as one of the top three long-term aftereffects experienced by AYA survivors. I share that not to make it feel inevitable, but to normalize the experience. You are not alone in this fear, and many struggle to navigate it. 

When you’ve lived through something as traumatic and life-altering as cancer, it makes sense that your brain and body remain alert to the possibility that it could happen again. Your mind is trying to protect you! The tricky part is that this protective system sometimes stays on high alert long after treatment ends (or longer than necessary). 

Navigating fear of recurrence will look different for everyone. For some people, it means working with a trusted therapist who understands cancer survivorship. For others, it means finding community spaces where they can talk openly with people who truly understand the experience. And for many others, it takes space and time (ugh, I know, I know….time?!?) for healing as your mind, body, and soul adjust to your reality. 

Here are a few approaches that I’ve found personally and professionally helpful in dealing with fear of recurrence: 

Let the feeling exist.
Trying to force fear away often makes it louder. Acknowledging that fear is present can sometimes soften its grip. For many people, fear of recurrence does not completely disappear; it softens with time and grows quieter with experience navigating it. I don’t say that to scare you, but to name a truth that many experience: Sometimes the work becomes less about getting rid of fear and more about learning how to let the fear exist without letting it run your life. You see, the more we try to avoid fear, the bigger it can become. You might experiment with gently allowing yourself to be scared while still doing the important things in your life. You might even try practicing being with the fear in small increments on purpose. Yes, I know that sounds a little strange, but stay with me. The more you practice letting the feeling exist, the easier it can be to navigate when it inevitably knocks on your door. 

Bring yourself back to what you actually know to be true.
Fear has a way of pulling our minds into imagined futures. When that happens, try to anchor yourself in the present moment. What do you know to be completely true right now? Right now, you are here in this moment. Right now, you are living your life inside of trauma or new symptoms. Right now, you are doing your absolute best to cope. Bringing your brain back to the current moment is not only an exercise in reeling your thoughts in, but an act of mindfulness. The practice of paying attention to the current moment, on purpose, without judgment. Mindfulness has been shown, across a multitude of studies and cultural practices, to be a cornerstone of resilience and psychological health. When you notice your brain in future-tripping land (as I lovingly call it), try to see if you bring it back to what’s right in front of you through art, music, or another novel experience. It should help take the temperature down! 

Additionally, if you are unsure what symptoms should prompt a call to your oncologist, ask them directly. Having that information can be incredibly grounding. Keep a list of those symptoms somewhere accessible (looking at you, iPhone notes app) so when your brain starts spiraling, you have something concrete. Sometimes that reminder helps us see that our mind is trying to protect us from a future that has not arrived.

Give the fear somewhere to go.
Talking about it with trusted people, journaling, creative expression, therapy, or support groups can help move fear out of your head and into a space where it can actually be processed. Giving your body an opportunity to release some of that energy can be really important for your nervous system and overall mood management. Things like movement, physical activity, grounding exercises, or emotional processing in safe spaces are all ways to help your nervous system move through fear instead of holding it alone. Give yourself and your body an opportunity to chew through the feelings by finding which activities work best for you. 

Your second question about choosing a career after cancer is another really big one. Choosing a career that balances your needs is already a complicated process in young adulthood. When cancer enters the picture, those decisions can start to feel even heavier. It makes sense that you might feel overwhelmed or even frozen when trying to choose something that is both meaningful and stable. Cancer often changes our relationship with time. Suddenly, the idea of wasting time can feel terrifying. There can be pressure to find work that feels deeply fulfilling while also making sure you have stability, health insurance, and enough flexibility to take care of your body.

The truth is that most people build meaningful lives in layers rather than through one perfect decision.

Give yourself some grace to make the next best choice you can in this moment, and maybe even some permission to change your mind later. As you continue to grow as a human, your needs and priorities may shift or evolve. That may mean a professional pivot somewhere down the road, and that is okay (and to be expected, growing and changing is so so human). 

Some tough love here: you do not have to solve the rest of your life today, even if your brain is trying to convince you that you should. 

If you still find yourself feeling stuck on the career piece, it may be helpful to work with a career coach, academic advisor, or another professional who can help guide you through what matters most to you right now. Sometimes, simply exploring your options with someone who understands the process can relieve some of the pressure to find a path that checks every box all at once.

The fact that you are asking these questions tells me you are paying close attention to the life you want to build. That kind of reflection can feel heavy sometimes, but it can also lead to a life that feels deeply intentional. What a wonderful paradox. 

Wishing you courage as you keep asking the big questions,
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.

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Ask Perrie: Waiting for the Other Shoe to Drop

Hi Perrie,

I’m about to turn 30 in two weeks, and I’ve been in remission from stage 3 triple-positive breast cancer for two and a half years now. I always struggled with taking care of myself before cancer, and now in survivorship, I struggle with the fear of losing my job due to the chronic issues I have now. I was fired while in active treatment at a different job, so it’s hard not to think it could happen again for something as minor as me having to call in sick two days in a row. Do you have any advice on how to handle that fear or advice on how to better advocate and take care of myself? 

Thank you

Dear Waiting for the Other Shoe to Drop,

Survivorship is full of polarities. There’s a push of “you should be all better now” and a pull of “I’m anything but better now.” Let’s make space for where you really are. I’m hearing that you’re juggling chronic illness, maybe even chronic pain, while also trying to take care of yourself, be an adult, pay bills, and show up as an employee. That’s a lot, and I’m probably only touching the surface!

Job insecurity carries real risk, and I don’t want to diminish or invalidate that, especially since you’ve already lived through losing a job during treatment. At the same time, I can hear how the fear of it happening again is starting to get in the way of day-to-day things like taking breaks when you need them, calling out sick, or advocating for yourself.

Giving yourself permission to take care of your body starts from within, and that often begins with self-compassion. You mentioned that caring for yourself was already hard before cancer entered the room. Survivorship can be an opportunity to gently renegotiate that relationship with yourself. Developing more self-understanding and compassion may help you rebuild trust in your own needs and limits.

If you’re open to exploring this, I’d recommend looking into the work of Kristin Neff, who researches and teaches self-compassion. Her workbook, guided meditations, and free online resources can be a helpful starting place: https://self-compassion.org/. Practicing self-compassion regularly can slowly help retrain your brain to respond with kindness toward yourself in moments of overwhelm instead of criticism or fear.

Speaking of fear, what you’re describing can also be deeply connected to anxiety. Your brain is doing what brains do best: trying to predict outcomes in order to keep you safe. The trouble is that sometimes that protective system goes into overdrive. Which, let’s be real, makes sense inside of cancer because you’ve really been through it! 

When you notice fear (whether that’s job loss or any other kind) rising, I’d encourage you to approach it with curiosity rather than judgment. That might sound counterintuitive, because most of us want to avoid fear as quickly as possible. But curiosity can help you gather important information about what you actually need in those moments.

For example, you might notice that fear shows up physically, maybe your breathing gets shallow, or your body feels restless. In that case, regulating your body through breathing or grounding exercises might help. Or maybe fear pulls you into spiraling thoughts and worst-case scenarios (honestly, relatable). In those moments, it may help to gently redirect your thinking or talk through those fears with someone you trust.

And if the fear continues to feel overwhelming, working with a qualified therapist can help navigate those patterns.

As far as advocacy goes, I want to say this clearly: advocating for your needs isn’t selfish. It isn’t a sign that you’re unreliable. It’s part of taking care of yourself so that you can keep showing up in your life and work.

If workplace accommodations might be helpful for you, I also want to point you toward a nonprofit called Cancer and Careers, which provides excellent guidance on navigating employment after cancer. They offer resources on things like intermittent FMLA, flexible work arrangements, and understanding your rights in the workplace: https://www.cancerandcareers.org/en/at-work/back-to-work-after-cancer

The truth is that we live in a culture that often prioritizes productivity and hustle over wellness and balance. Protecting your health may sometimes mean learning how to ask for flexibility or support.

At its heart, a lot of what we’re talking about here is rebuilding trust with yourself. Survivorship, and maybe even this upcoming 30th birthday, can be an invitation to try something new: listening to your body and honoring its limits, even when fear tells you there might be consequences.

You deserve a life that includes stability, self-compassion, and room to heal at your own pace.

Standing with you as you learn to take up space,
Perrie

Ask Perrie is Cactus Cancer Society’s advice column for the questions 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.

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Ask Perrie: Stuck In the Freeze

Dear Perrie,

Ever since cancer, I’ve been paralyzed by procrastination. There are so many things that need to be done that I just can’t do any of them. The phone calls, bills, having to talk to people about why the statement I got is wrong- it’s all too much. How do I move past this? I need to deal with these things head-on, but can’t bring myself to do any of it. 

I’m tired and overwhelmed.

Dear Stuck in the Freeze,

First, I want to name that what I’m hearing in your question isn’t just procrastination. Yes, you might be avoiding important tasks, but when we’re in fight-or-flight mode (fight, flight, freeze, or fawn), our nervous system sometimes tries to protect us from overwhelm by doing exactly what you described: freezing.

When that happens, it can become hard to think clearly. You might avoid tasks, numb out, or feel like you aren’t even fully present when these things are being discussed with you. That doesn’t mean you’re lazy or failing; it means your nervous system has been under a lot of pressure (and like….duh, Perrie….. Cancer is hard!)

So my guidance for moving through this starts with something simple: notice the freeze. The more awareness you can bring to those moments when you feel yourself shutting down, avoiding, or checking out, the easier it becomes to gently move through them. The first step really is awareness, as they say. 

You might start paying attention to how your body, thoughts, and emotions show up when you’re facing these tasks. Do you feel tension? Brain fog? A sudden urge to walk away or hide under your covers? Slowing down and getting curious about those reactions can help you respond with a little more compassion toward yourself.

From there, this becomes a divide-and-conquer situation. We’re not meant to handle hard things (or heal) alone. If you have access to a support system (friends, family, church members, online cancer buddies, etc.), consider reaching out for help. There’s no shame in letting someone shoulder a bit of the burden.

For example, someone might help organize bills into a spreadsheet, sit with you while you make calls, or help you figure out where to start. Sometimes just having another person nearby can make a task feel far less overwhelming.

If you don’t have that kind of support available right now, you might ask your medical team about connecting with a social worker or nurse case manager. Many oncology teams or insurance plans can help connect patients to someone who can assist with billing issues, financial programs, or simply advocate on their behalf. Having a professional in your corner can make a huge difference.

And finally, when in doubt: one call at a time.

Big mountains look impossible when we try to climb them all at once. Instead of focusing on every task waiting for you, see if you can bring your attention to the next smallest step. Just one. Giving yourself permission to handle the rest later (and maybe even tell yourself that’s a problem for future me!) can lower the overwhelm enough for your brain to move forward with one time. Do that practice enough and you might find that you’ve completed 3-5 next steps!  

You don’t have to solve everything today. One step is still movement.

Rooting for you,

Perrie

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Ask Perrie is Cactus Cancer Society’s advice column for the questions 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.