A man stands stuck in a mental storm surrounded by negativity, light streams in through a break in the clouds where is friend is reaching out to him to help guide him out.

My Rare Disease Does Not Make Me a Burden

I recently came across a journal article discussing the "challenges" of parenting a child with my rare disease.

This triggered feelings of shame and anger within me. I asked myself,

Where are the journal articles discussing the challenges of living with my rare disease?

Measuring up to my own standards

Personally, I am already quick to judge myself harshly. It is not uncommon for me to ponder the ways in which I do not measure up in my relationships with others. The ways that I have to go about living my life as a person with type 1 narcolepsy are limited by many factors – all dependent upon my symptoms.

These limitations make it difficult for me to do the things I want to do, including constantly being there for my friends when they need me. Just this weekend, my friend asked me to come over because they were having a tough mental health day. Unfortunately, I had already expended my energy for the day doing another activity. I had to take a rain check, and I felt awful about it. I felt like I wasn't measuring up to the standards of friendship that I value in myself and others.

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

After all, shouldn't a friend be there for you when you need them?

I am trying my best

I had to remind myself that I am trying my best. Running myself into the ground to help others is not conducive to healthy relationships. Overextending myself past my physical limits for another person is a surefire way to create feelings of resentment towards them, and myself, in the long run.

I had to remind myself that I am doing my best. I can't be there for everyone all of the time due to the nature of my disability. But that doesn't make me a bad friend.

In this case, I offered to talk over Facetime or meet up the next day. My friend was able to get support from their neighbor, and we hung out the next day. Everything worked out in the end.

The problem with believing I am a burden

When I believe I am a burden, I am less likely to seek help from others. Even when people want to help, I hold myself back from asking for help. This can keep me from getting my needs met and make it difficult to build deep relationships with others.

When I believe I am a burden, I don't let people support me. And when I do let people support me, I still feel somehow unworthy of it. I know through my own experiences that going through life this way is lonely and hard.

Start a Forum

Instead, I remind myself of these 3 things:

-I am worthy of love and care

-My symptoms are a part of me, but they are not me

-I can't control my symptoms, but I can accept them

We can't always control who stays and who goes from our lives. But we can deepen our relationships with others and ourselves by being our full, beautiful selves, shamelessly.

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.

Join the conversation

Please read our rules before commenting.