a woman sitting on her couch with a cup of tea and her cat, reading a book

5 Tips for Practicing Self-Care With a Rare Disease

Last updated: March 2023

As a person continuously navigating life with multiple chronic illnesses, self-care is an interesting concept for me. How I wish that a day at the spa could wash away my medical conditions! If only a massage could make me forget the trauma I’ve experienced since my rare disease diagnosis.

In truth, I don’t think there is a firm definition of what self-care should be or should look like, especially when we add different components of medical conditions that need to be navigated. Each person is different and will have a different concept of what is helpful for them. And self-care doesn’t need to fix everything; it just needs to help.

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5 tips for practicing self-care with a rare disease

Here are 5 tips from me to consider when choosing a self-care activity:

  1. Choose activities that are easier to navigate
  2. A long day at the beach might be a relaxing choice for many, but for me, spending a lot of time in the heat and sun would make my eyes feel awful. Similarly, a spur-of-the-moment road trip to an unknown destination is exciting for some, but as someone with very specific food restrictions, it’s a logistical headache. I’m much more relaxed when I choose activities that are easier to navigate with minimal additional thought to my conditions.

  3. Remember that rest is productive
  4. Having a chronic illness can be exhausting between the illness itself and navigating the world with said illness. As much as I may want to spend my free time doing something exciting, some days I just need to stay on my couch with my cat and watch TV. I have to remind myself that I shouldn’t feel guilty about these rest days because my body tells me they are necessary.

  5. Give yourself permission to be flexible
  6. Flexibility sometimes means making tentative plans that are easy to cancel in case I’m not feeling well. It also might mean making sure I have extra time before an event in case I need a few extra minutes to navigate symptoms. Or perhaps it’s prioritizing 1 main activity and playing things by ear afterward, depending on my energy level. It also might mean going home early. Fear of missing out can definitely be a factor here, but beating myself up about not feeling well is the opposite of self-care. Normalizing flexibility helps me feel more relaxed.

  7. Redefine self-care
  8. Self-care can be anything. It doesn’t have to be a spa day or a relaxing facial. Maybe it’s simply sitting outside or listening to a favorite record. Maybe it’s even cleaning your home. Self-care does not come in a one-size-fits-all package. It needs to be something that helps you.

  9. Explore something new
  10. Perhaps you need to try different things to figure out what makes you happy. Perhaps you ask a friend to join you as you explore activities. We may not know how we feel about something until we try it.

Bonus tip: cut yourself some slack

Life with a rare disease or chronic illness is not easy. I frequently remind myself that I don’t have to be a superhero – and hey, just reminding myself of this is self-care!

Join the conversation! Tell us, what is your favorite self-care activity or tip? Share in the comments below!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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