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Why Care About A Rare Disease That Doesn’t Affect You?
Those of us living with PH and other rare diseases are flooding social media this month in order to advocate and raise awareness about what makes us rare.
Why should someone who is presumably healthy and fortunate to have never witnessed a loved one struggle with a rare disease, bother to read, watch video’s and listen to our struggle?
No one has been bold enough to actually say this to me but I have mentioned in my posts how at one time, I never heard of Pulmonary Hypertension either. My son was born healthy. He didn’t become symptomatic until he was 6 years old. I ask people to at least glance over what I share because you never know when a symptom may sound surprisingly familiar and inspire a conversation with a doctor.
What would your response be if someone expresses lack of interest because your rare disease hasn’t affected their life?
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10 Replies
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I’d tell them that many doctors aren’t familiar with PH, and if someone you love develops the symptoms, they need to know about the possibility so they can advocate for themselves. I had never heard of PH before my son was diagnosed. If I had, I would’ve made sure he got the medical tests to confirm or refute the diagnosis. He would’ve been diagnosed about two years sooner.
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I would simply say that disease can happen at any time to anyone. Whether it is a child that is born with a condition that the parents weren’t expecting, an unfortunate accident that can change someone’s life for the rest of their life, etc. Life is so unpredictable and fragile and I think this scares a lot of people because they have the face the fact that we are all going to die one day (I know morbid topic) and we are all invincible. Tragedy happens and illness happens whether people want to be aware or whether they want to remain ignorant about it. Education is power.
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@mamabear007 This is something that my mom and I often discuss too. The whole timing of things and “wishing we knew sooner” mentality. It is hard because of course you don’t want to dwell on the past because the past just can’t be re-written. But people CAN be aware of this to better advocate for themselves or a loved on in the future. I couldn’t agree with you more!
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Same here @mamabear007. For two years I was so desperate to figure out what was wrong with my son. If I had heard about or read a post about PH during that time it would have set up a red flag for me. When his doctor became suspicious that Cullen had PH, I went home and researched. What I read was all too familiar. It was a sad but big “Aha!” moment. That’s why I share my son’s story.
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Great topic and comments already, ladies. I have received that question several times. I responded first by educating a little about PH and that while rare it’s not the only rare disease that can affect myself and others my age. I also told an older lady that while I would hope she wouldn’t need to know, if the time comes that she or a loved one did need it, they would appreciate it then. I wasn’t that lucky to know before I was diagnosed with a rare disease.
Life is unpredictable and we never know what the future holds. If we did, we could all prepare, I’m sure much differently.
So I will not apologize to anyone at any time that I spread awareness and advocate for PH and any other rare disease. I’m excited to make a short video actually this week for rare disease day. Did y’all make yours? #whatmakesmerarePH
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@jenc those are excellent points. As humans our reality is that at some point we are all going to have to face illness and our mortality.
I cheated and shared a video to FB that I made 5 years ago. It’s a long one but that’s because I made a great effort to explain the many ways PH had complicated my son’s life. I look forward to seeing your video, Jen.
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Short answers to “why care?”: John Donne’s “ask not for whom the bell tolls…no man is an island…” There’s Hillel too, about being for oneself but not for oneself alone.
My approach leans to the pedagogic, an occupational hazard. Having taught the disinterested (no choice but to be there) as well as the motivated, I look for ways to make the material interesting and engage my target audience. fwiw lecture is often not good pedagogy. Two way conversation — interactive discussion, Q&A — is usually more effective and always more engaging. Sometimes it grows out of answering a question, other times it requires a nudge — dropping a prompt into a conversation or a comment designed to elicit a question. A lot also depends on audience. Shape (form and style) your information to the audience. Avoid TMI. Answer gormless questions (the ones we hear so often) kindly — ditto responding to comments. Caveat: sometimes I succumb to temptation and slip up there.
The best conversations occur naturally, grow unexpectedly. If an attempt doesn’t pan out as hoped, there’ll be another. One of the best, most informative and varied, was my Facebook timeline thread when I posted photos from last summer’s 5:10 to Yuma 5K. I also get questions because I am visible — out and about on foot with oxygen tank in backpack or utility cart. This morning I changed my timeline cover to a herd of zebras with PH/Rare Disease content, hashtags and link in the description, and am now waiting to see what develops.
I also collect resources about PH, as much for sharing to inform as for myself. Short visuals videos and other visuals are good. In addition to using these resources for answering questions and responding to comments, I post them on social media with added commentary.
I probably won’t do a #whatmakesmerarePH video for FB or Instagram but will share. fwiw the #whatmakesmerarePH hashtag is conspicuous by its near absence on Twitter — three instances at last count, two of which I posted. The tag probably doesn’t make much sense to anyone not familiar with with PH or rare diseases so I add content and additional hashtags to explain.
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@vanessavaile you really do a stellar job at promoting awareness and encouraging conversation. I appreciated the hashtag that you recently shared on social media. If our stories and the information that we share helps just one person, than it was well worth the effort.
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Thanks, Colleen. I will have to look for your video. Yes, that video is on my list to do by Monday. It has been a busy few weeks. Videos are not my jam, so I think I have been dragging my feet.
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Wow, @vanessavaile, you continue to inspire me. You do an awesome job with awareness. Thank you for all that you do. I hope that you are feeling OK.
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