Why taking the time for mental health as a caregiver is important
Therapy gave me a place where my grief and exhaustion were allowed to exist
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Talking about mental health isn’t the easiest thing to do. Sharing our feelings can be uncomfortable, and asking for help may seem like exposing a part of ourselves we’d rather keep hidden.
I’d always shared my feelings openly and leaned on family and friends. For a long time, I thought that was enough and didn’t think I needed any additional help. But everything changed when I became a mom, and especially after my second child was diagnosed with Pompe disease.
After my first child was born, I experienced postpartum depression but didn’t ask for help. I didn’t realize I had it because it didn’t look like what I’d imagined. I was still getting up and doing what needed to be done, but beneath the surface, I felt anxious, numb, and overwhelmed. I thought it was just new parental stress or the shock of having a child with medical needs. I truly believed I could handle everything on my own.
Two years later, my second baby was diagnosed with late-onset Pompe disease. That news brought another wave of emotions. Additionally, I was overwhelmed by her treatment plan, which entailed medications and other therapies, appointments, insurance calls, and more. Everything focused on her care. I wasn’t the one who was sick, so why was I struggling?
For a long time, I didn’t think my mental health mattered. Obviously, I was wrong.
Over time, I realized that my mental health struggles weren’t going to simply disappear. Instead, they piled up. I became irritable, foggy, resentful, and had trouble sleeping. I felt like I had to earn a break or rest, and that my feelings were a burden. Asking for help felt like I was failing as a partner, a mom, and a caregiver, even though I had chosen to be a parent.
Eventually, I reached a point where I knew something had to change. I realized I couldn’t handle it alone.
Facing the truth
Caregivers are praised for their strength and resilience. I used to take pride in “doing it all.” But real strength is facing what’s hard, not pretending it doesn’t exist. Taking care of my mental health has made me a better mom and advocate who is more present for my family.
Looking for therapy wasn’t a big, brave moment. It was stressful and overwhelming. I felt like I had to get it right the first time and didn’t want to waste time on a bad fit. I tried several therapists before I found someone who understood me. Some didn’t get what it’s like to care for someone with a rare disease. Some only talked about anxiety and missed the grief that comes with chronic illness. Sometimes, starting over felt harder than just staying where I was.
When I finally got help, I saw that caregiving trauma and anticipatory grief are real. My depression and anxiety weren’t failures; they were my body’s reaction to constant stress, postpartum hormones, and knowing that my child faces a rare and unpredictable future.
Taking care of my mental health gave me the tools to regain control of my life. It didn’t give me extra “me time,” but it did teach me to relax, pause, breathe, and compartmentalize things. Now I can give myself permission to step back from what I can’t control and accept uncertainty.
Caregivers often pretend that everything is under control. We move through life without a pause button or time set aside for our own mental health. There’s no treatment plan for us. We just cope however we can and keep going.
Maintaining my mental health now is as much a part of my treatment plan as it is my daughter’s. As caregivers, most of us struggle to make time for ourselves. While planning ahead for our Pompe warriors, we can also set aside time for ourselves. It doesn’t have to be therapy, that’s just what worked for me. It could be 10 minutes of meditation, a walk around the block alone, or even just stepping outside to take a few deep breaths. It’s all about making space in our minds for ourselves or our thoughts, or just not thinking at all.
Therapy gave me a place where my fear, grief, and exhaustion were allowed to exist without needing to be fixed or minimized. It reminded me that my inner world deserves care just as much as the visible work I do every day. I was able to reclaim parts of myself and become more sustainable. If you’re waiting for permission to ask for help, let this be it. Taking care of your mental health isn’t a sign of weakness; it’s choosing to find clarity, strength, and hope.
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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