Living with Pompe disease can mean a lot of uncertainty. Much on the medical side — how the disease progresses, what your test results show, decisions about treatment, changes to your infusion schedule — can feel out of your control. This loss of control is one of the hardest parts of a rare, chronic condition, and it weighs on many patients.
A wellbeing check-in is a simple way to turn some of that feeling around. It’s a short, honest look at the parts of your health and daily life that are still yours to influence — your mood, your rest, how you move and nourish your body, your relationships, your sense of purpose, your role in your own care.
This guide walks you through seven areas to check in on, with a few questions to ask yourself and one small, doable thing to try in each. There are no perfect scores or expectations. It is simply meant to be something you can come back to whenever you need to feel a little steadier.
Quick Note: What follows is not a substitute for your medical care, your treatment, or the advice of your care team.
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1. Checking In with Your Mind
The mental load of a chronic condition is real, and it’s easy to carry a lot of feelings without ever acknowledging them. Grief for how things used to be, worry about the future, frustration on the hard days — these aren’t signs you’re coping badly. They are normal responses to genuinely difficult situations.
Check in with yourself:
- How have I actually been feeling lately — not the polite answer I give to others, but the honest one?
- When was the last time I felt okay?
- Is there a worry I’ve been holding on to but haven’t said aloud?
One small thing to try:
- Name the feeling, either out loud or in a journal. Sometimes writing down “I’m worried about my next infusion” takes some of the weight off it.
- If a heavy mood has been sitting with you for weeks rather than days, consider mentioning it to your family doctor or care team. Emotional health is part of your health, and support for it is available — including counsellors who work specifically with people managing chronic illness.
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2. Staying Connected to Others
Isolation is one of the quieter risks of a rare disease. When your condition is something most people have never heard of, it’s easy to feel invisible — and equally easy to withdraw, especially on low-energy days. But connection is good for your health, and it’s something you can control.
Check in with yourself:
- Who have I talked to this week, beyond appointments and errands?
- Is there someone I’ve been meaning to reach out to but haven’t?
- Do I have anyone in my life who gets what living with Pompe is like?
One small thing to try:
- Reach out to someone who makes you feel good. It doesn’t have to be a deep conversation — sometimes just complaining about the price of eggs or talking about a recipe you tried recently can be cathartic.
- Consider connecting with others in the Pompe community. Talking to someone who understands the specifics, without needing it all explained, can be a different kind of relief. Patient organizations (like CAP) and online support groups exist for exactly this purpose.
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3. Holding On to What Makes You You
It’s easy for a diagnosis to quietly take over your identity. You may feel like you are a patient first and a person second. But you are still someone with tastes, curiosities, a sense of humour, and things you love that have nothing to do with Pompe. Protecting that is one of the most grounding things you can do.
Check in with yourself:
- What is something I enjoy doing that I haven’t done in a while?
- Is there something I’ve always been curious about but never made time for?
- What’s one thing coming up — however small — that I’m looking forward to?
One small thing to try:
- Reintroduce one small pleasure this week: a favourite album, a hobby, a show, a walk somewhere you like being.
- If something you loved isn’t accessible in the way it once was, ask yourself if there’s a modified version of it that still brings the same feeling. The activity can change shape without losing its meaning.
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4. Protecting Your Rest
Rest is more than sleep, and it’s more within your influence than it often feels. Fatigue is a real part of living with Pompe, so how you disperse your energy and calm your body genuinely matters.
Check in with yourself:
- Am I resting before I’m completely depleted, or only once I’ve crashed?
- What tends to wind me up, and what settles me?
- Have I been feeling rested after sleep?
One small thing to try:
- Build in one deliberate pause tomorrow — a genuine break before you hit empty.
- Try one simple way to settle your nervous system: a few slow breaths, a few quiet minutes, stepping outside. Small resets add up.
- If sleep or fatigue has changed noticeably, it’s worth raising with your care team — sometimes there’s a practical, addressable reason behind it.
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5. Caring for Your Body
How you move and how you eat are two of the most direct ways you can support your body day to day — and, importantly, they’re areas you have influence over. This isn’t about strict regimens or getting it “right.” It’s about small, sustainable choices that help you feel steadier, made in whatever way works for your energy and your abilities.
Because these two topics deserve their own space, we’ve covered each in detail elsewhere — so here we’ll keep it to a check-in and point you to the full guides.
Check in with yourself:
- Have I moved my body in a way that felt good — not punishing — lately?
- Am I eating in a way that supports my energy, or mostly grabbing whatever’s easiest?
- Is there one small, realistic change that would help?
One small thing to try:
- Pick one bit of movement that fits today’s energy — a solid workout, a short walk, a few seated stretches. For ideas and motivation on tougher days, see Staying Active: Finding Motivation to Move.
- Prep some easy-to-grab nourishing snacks or meals, to make the next few days easier on yourself. For more ideas, see Tips and Hacks for Sticking to a Pompe-Friendly Diet.
- Because everyone’s needs are different, your care team, physiotherapist, or dietitian can help shape a longer-term movement and nutrition plan that is right for you.
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6. Building Steadying Routines
When big things feel unpredictable, small predictable ones become surprisingly steadying. A day with a few reliable anchors in it — a morning ritual, a regular walk, a set time you wind down — tends to feel more manageable than one with none. You get to choose those anchors.
Check in with yourself:
- Which parts of my day already feel steady, and which feel chaotic?
- Is there a small routine that used to ground me that has slipped?
- What’s one point in the day I could make a little more predictable?
One small thing to try:
- Choose one anchor and protect it: the same wake-up time, a morning coffee you don’t rush, a set moment to step away from screens.
- Make your immediate environment work for you. Keeping the things you use most within easy reach, or clearing one surface you look at often, can quietly lower the friction in a day.
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7. Being an Active Partner in Your Care
This is the area where “taking back some control” is most literal. You can’t control every medical decision, but you can be an informed, organized, well-supported partner in your own care — and that role is genuinely powerful.
Check in with yourself:
- Do I understand my current care plan well enough to explain it to someone else?
- Are my records, contacts, and key information organized and up to date?
- Is there a question I’ve been meaning to ask my care team but haven’t?
One small thing to try:
- Keep a running note of questions as they come up, so you’re not trying to remember them all in the room. Bring it to your next appointment.
- Keep your key medical information current and accessible — an up-to-date summary of your diagnosis, treatments, and care team contacts is a concrete form of self-advocacy. (Our guide on creating an emergency medical file is a good starting point.)
- Stay connected to your patient community and organizations like CAP. Being informed about your condition and knowing where to turn for support is one of the steadiest sources of control there is.
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A Starting Point
You don’t need to work through all six areas at once — in fact, please don’t. Pick the one that stood out most, choose a single action item, and start there.
And because life keeps changing, this check-in is meant to be returned to. Some weeks you’ll have energy for several of these; other weeks, simply noticing how you’re doing is enough.
The medical side of Pompe disease will always involve things outside your control. But it was never the whole story. So much of your wellbeing — how connected you feel, how rested, how much like yourself — still belongs to you. Coming back to that, again and again, is its own quiet form of strength.
If any part of this check-in surfaces something that feels too heavy to carry alone — low mood, anxiety, or a sense of being overwhelmed — please reach out to your family doctor, care team, CAP team members, or a mental health professional.