Guest Voice: Explaining the complexities of life with rare diseases
One challenge is adequately conveying the difficulties of multiple chronic illnesses
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Rare diseases usually don’t play nice with each other. They can land those of us who have them in a catch-22 scenario where it feels like we lose no matter what. I am one of many in this oh-so-lucky club of multiple rare diseases.
I’ve been part of the hereditary angioedema (HAE) space for some time, and I love meeting and talking to others who share similar experiences with me. But the latest “clique” I’ve joined is the Charcot-Marie-Tooth disease (CMT) community, following a recent diagnosis.
Managing different chronic illnesses is challenging. Sometimes it requires taking two or more medications that interact negatively with each other or with another diagnosis. Or perhaps physical therapy is needed, but it might cause another condition to flare up unexpectedly.
I’ve needed to use a wheelchair for the better part of a year now because of my CMT symptoms. While using the chair is fine most of the time now that I’m used to it, it can still cause me to experience an HAE flare as a result of propelling myself. The overuse of my hands and arms causes inflammation. Deciding which rare illness I’ll be angering today can seem like an impossible choice. I know I’m not alone in this struggle.
Managing multiple chronic illnesses also means having to explain to those around me how complicated my situation is. Sometimes I’ll run into somebody who knows I have HAE but not anything else, so they’ll ask why I’m using a mobility aid. Some people don’t know that rare diseases aren’t mutually exclusive and can happen at the same time.
Listening and learning
The emergency room is another place I find myself having to explain things. While it’s common to be asked a million different questions in the ER, staff sometimes is confused when I have more than one complaint stemming from various illnesses.
Doctors’ offices are another problem. I see multiple specialists for my conditions, and I often feel I have to pester them to communicate with one another about my care.
Living with several rare diseases can feel isolating, frustrating, and confusing. I don’t expect strangers to understand my situation, but I do hope my friends and family will. Not everyone is knowledgeable about my conditions, but it helps when they are willing to listen and learn.
Even though my parents didn’t fully understand my health at the beginning, they get it now and are my biggest supporters and advocates. I am eternally grateful for them, because not only do they advocate for me, but they also taught me how to advocate for myself. Knowing how to speak up for myself is key to living life to its fullest with multiple chronic illnesses.
To submit your own Guest Voice for publication on Angioedema News, please email your idea to our columns manager at [email protected] with the following included in the subject line: “Guest Voice: Angioedema News.”
Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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