For many of us, being a part of the cystic fibrosis community is obligatory. No matter our degree of engagement, we have CF and therefore are part of a community larger than we are. Choosing to play a part in the community can be one of the most positive, powerful, and impactful experiences. Through it, you might learn of new drug therapies to bring up to your doctor or develop friendships with others who can share in empathy.
These friendships are important, and I’ll daresay, necessary. The friends could be people from parts of the world you’d never have met without CF; who become your confidants in ways you didn’t know you needed. Your bond is intrinsic, right down to shared genetic mutations. However, it also makes sense to distance yourself from the CF community and your disease as much as possible. As with all things precious, CF relationships come with a cost tolled by those small mutations.
Experiencing suffering and death is an unavoidable part of the human experience. Those with CF are stingingly aware of it, not only for ourselves but also for the people we willingly choose to love and learn from. And more often than we think we can handle, our friends and loved ones pass.
A lot of emotions can surface when mourning. I find myself crushed by the weight of losing someone so dear and the weight of processing how their family must feel. And because a loss to disease is so relative to me as a person with CF, I’m reminded of my mortality. In the CF community, this is a “normal” experience. It’s important to recognize all these emotions and cope in a way that is not only healthy for our bodies but also for our minds. This is called self-care.
Self-care looks different for each person. Within the last week, I’ve made sure that I’m extra loving with myself and have found ways that are necessary for me to take care of myself:
- I write, whether by typing on my phone or scrawling notes on napkins. I list things that bring joy into my life or write how I feel about CF. I let it out; unpolished, unrefined, and as authentically as possible. This is my most empowering method. I recognize the unknown and how I feel about it.
- I reach out to friends and family. I need to know I am loved as I mourn. I reach out to my networks to talk about what’s on my mind or simply to feel their warmth. Conversations with loved ones remind me of the reasons I keep moving forward.
- I watch baby animal videos on Instagram. When my therapist called this a form of self-care, I thought it was ridiculous. But, it’s a way to distract my mind in a gentle, warm way. It subtly reminds me of life and how equally beautiful and silly it is. There’s nothing quite as cute as a puppy pug chilling in a backpack.
- I remind my loved ones that they are indeed loved and appreciated. When the opportunity arises, I relish in their accomplishments with them.
- Heck, I even tell myself how much I love me. I write myself love notes about how dang proud I am of myself. Try it out. Sometimes it doesn’t feel genuine at first, but with practice, you’ll get there.
- Blasting music that makes me feel at home.
How do you practice self-care in the midst of loss?
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.