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5 Things About Mental Health and Life With Rare Diseases

Last updated: November 2023

May is Mental Health Awareness Month. Like many in the rare disease community, maintaining my physical and mental health is ongoing work for me.

Recently, I've been working to improve the care I give to my mental health and want to share a few of my current takeaways.

5 thoughts about mental health and rare diseases

Some are quite cliche, but I do find them useful to say (or write) out loud during times when I may face challenging mental and physical circumstances.

We all learn to live with our rare diseases and develop amazing coping mechanisms, but sometimes it's helpful to step back and look at how our mental and physical health are related.

1. This is hard

Living with health challenges, especially rare diseases that are often misunderstood by medical professionals and the public, is hard! What we go through, both physically and psychologically, shouldn't be disregarded.

Saying that it's hard isn’t an admission of not being strong, it's a sign that you're working on it. Finding allies, either within my rare disease community or outside of it with people who are understanding of the mental and physical health challenges of a rare disease, has changed my rare disease life.

2. Embrace your own coping mechanisms

Honestly, I’ve never understood the literal spoon theory (Why do we start out with so many spoons in the first place? Where do they all come from?) but the idea of only finite physical or mental energy and prioritizing based on that has been life-changing.

I know how much I can schedule based on how I will probably feel and sticking to that schedule is the best way to preserve my physical, and thus my mental, health. Don’t be afraid to share your energy-conservation strategies with others! Once people know you aren’t purposefully cancelling on them, it's so much easier to schedule (and re-schedule) things that work for your body.

3. Practice self-care (really), whatever that is

I know, I know – self-care is the buzziest of buzzwords in our current world but finding what self-care is for you, in all its potential forms, is so powerful.

For me, self-care can look different depending on how I feel, what I can do, and what else is going on. It’s everything from the proverbial walk with the dog to a meditation app to binge watching mindless but soothing television shows. Finding and sticking to even a changing routine is so valuable.

This or That

Self-care is...

4. Don't be afraid to reach out

Once again, this can't be said enough. Mental health resources are out there and can be so useful. From self-guided programs to individual or group sessions, in person or online, seeking help is never a sign of weakness or an admission that something is "wrong" it's just another tool to help navigate this rare disease life.

5. It's okay not to be okay

If you are here it's probably because you, or someone you are close to has a rare disease. It is totally okay and normal to have mental health challenges with our rare disease health issues, and to have those challenges change over time!

It's not a reflection on your coping abilities or strength to suddenly have challenges with things you've always faced. It just is, and that's okay.

How do you look after your mental health? What helps you cope? Share with the community 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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