I’m Still Learning the Importance of Self-advocacy When Living With a Rare Disease

Self-advocacy doesn't come naturally for columnist Anna Jeter

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by Anna Jeter |

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“No! She can’t take off her backpack! She has to wear it or she could die!”

The emotional exclamation echoed throughout our elementary school gymnasium. The protest came from a classmate of mine. We had known each other through all of grade school, and he had grown very protective of the “rules” that surrounded my medical equipment — mainly that I had to wear the backpack holding my intravenous pump at all times.

When a substitute gym teacher unfamiliar with my condition sternly asked me to remove the pack, my classmate was quick to intercede on my behalf.

At that age, I’m sure I would have been able to voice my needs to keep the device on my body — especially considering it could not be physically removed due to the central line implanted in my chest. Still, I can look back on this moment and acknowledge my difficult journey with self-advocacy while living with a rare illness.

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In some ways, I think I’ve grown worse at voicing my needs as I’ve grown older. Shifting into adulthood brings forward a stronger awareness of others, and over the years, it seems I’ve become weary of posing any sort of burden on those around me.

Even during the pandemic I had a hard time voicing my need for people to wear masks around me. It’s a simple and justifiable request. Even though any of my friends or acquaintances would be willing to do this  for me, I frequently found myself struggling to make the actual request.

By nature, I avoid conflict, and I think this can make advocacy difficult. Who am I to ask others to compromise for my comfort? Why should I hassle them with my problems? Ultimately, I would rather wrestle with my own discomfort than ask others to adjust.

Examples of advocacy

I think self-advocacy is also difficult given that I was diagnosed with pulmonary hypertension (PH) at such a young age. For much of my life, my parents, and especially my mother, were strong advocates on my behalf. In many ways, I still rely on them for these roles. This can mean that I sometimes am reluctant to step up on my own as an assertive authority for my health needs.

Looking back, I’ve been fortunate to be surrounded by people who have been able to intuit what I have not been able to ask for. Friends who knew to look for a closer parking spot. Professors who offered me a makeup exam when I stubbornly showed up exhausted to class after a night in the ER. And even strangers, like the worker at the hardware store who offered to carry my heavy box for me.

With that said, I know the importance of self-advocacy. I witness its power frequently via chronic illness leaders on social media, and in my own day-to-day life when I’m willing to fill that space for myself. I feel its impact when I voice that I would rather take the elevator than the stairs, relief washing over me when I realize this is not a difficult or unreasonable request — it’s something I deserve to be able to ask for with confidence.

Self-advocacy is even more imperative in the context of a rare illness. In the case of PH, very few people would have been able to name my illness, let alone discern my needs. This made it my responsibility to provide education and information. While it felt as if I were burdening others, the truth is that people simply would not have known my unique set of needs unless I brought them forward myself.

Introducing these elements into a conversation or relationship is difficult, but if they’re never brought up, it is guaranteed that nothing will change.

In that gym as a little girl, I had a right to my medical devices and should have felt no shame, guilt, or discomfort in asserting that need. It’s an anecdote that can be seen throughout my life with chronic illness and a lesson I will continue to learn.

I’m thankful for all of the examples of advocacy in my life, and I know that every time I’m willing to take up a space of advocacy for myself, I am helping to normalize the rights of disabled individuals. Every time I speak up, I am doing so for every person in the chronic illness community. But I’m also doing it for my younger self, who needed to know that it was OK when she required different accommodations than her peers.

Note: Pulmonary Hypertension 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 Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Keisha Jackson avatar

Keisha Jackson

Thank you for sharing your story. Self advocacy is so important and difficult at times. I, also, feel as if I am burdening those around me. I have learned how to plan and manage as best as possible when attending concerts, festivals, etc. It is not always easy or pleasant, but it is necessary.


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A Conversation With Rare Disease Advocates