What’s the difference between attention seeking and education?
Those recently diagnosed often need validation. Later, they seek to educate.
“Would you stop sharing so much about mya … whatever the hell it is you have? All you’re doing is looking for attention.”
Anyone else heard that before? Maybe from colleagues at work when you’re trying to explain why you’re requesting accommodations? Or family members who roll their eyes when you try keeping them in the loop — as they’d asked you to do?
Perhaps you share your journey with myasthenia gravis (MG) on various social media platforms, and those illustrious trolls are doing what they do best — trying to cut you down.
Attention seeking versus education
Do you think there’s a difference between seeking attention and trying to educate those around you about this rare disease you battle? I do. However, I think we all start at the attention-seeking stage and eventually graduate to education.
In the early days of my MG journey, I sought reassurance through support groups on social media and elsewhere on the web. I shared my experiences in these groups and on my personal pages to seek validation. I wanted to make sure that what everyone else was telling me — that it was all in my head — was a false narrative. I needed to confirm that I wasn’t crazy.
In those early days, I was seeking attention in the form of validation. When that validation fails to come from our care team, as rare disease or chronic illness patients, we tend to look for it elsewhere. This search has its own set of benefits and detriments, and perhaps I’ll dig into those another day.
Once I received validation from the dreaded attention seeking, much of my sharing became purposeful and educational. I wanted — no, needed — my inner circle to understand what I was going through, why I was that flaky friend, and the reason behind the constant cancellations.
If I didn’t take the time to show what was behind the curtain, both good and bad, how could I expect those around me to learn about MG and at least attempt to be sympathetic?
The sharing of patient experiences helps care teams and organizations like Trend Community — which aims to contribute to “a holistic understanding of living with a rare disease beyond the people and family members affected by it” — understand the full outlook that a disease like myasthenia gravis has on a person. Not just what can be measured in an office at an appointment, but the toll it takes on people and their families.
Advocacy and opportunity
Sharing my story isn’t always easy. From the beginning, I promised myself that I’d share the parts that are difficult for most to share — things like missing out on my son’s activities while he was in high school or ways that my husband and I work through my disability to maintain our intimacy.
I’m thankful I’ve done it, because comments on my columns and social media pages have reassured me that my willingness to be open is helping people. That’s all that matters, and it makes every bad day worthwhile.
It’s also opened up some amazing opportunities to continue my awareness advocacy for MG.
I recently became an ambassador for Trend Community. I love this organization because it evaluates the daily struggles of people with a chronic illness or disease and combs the data to see what clinicians might be missing. Its staff takes conversations and turns them into actionable insights.
Last month, I had the good fortune to speak to some folks from iHeartMedia as the first interview for a new podcast they’re launching about untold stories. I was able to speak about the difficulty of diagnosis and finding treatment, especially as someone with seronegative myasthenia gravis. I’m hoping they share the recommendation I made for clinicians: that they listen, not just hear, what their patients are telling them so that fewer people have to wait seven years or more for a diagnosis.
On the day of this writing, my husband and I have finished up formal interviews for a couple of documentary-style videos for another website. There will be at least two — one demonstrating the life of a caregiver for someone with MG and the other telling my story about living with MG and requiring a caregiver.
There can be a fine line between attention seeking, validation, education, and advocacy. Speaking my truth about this life helps me live my best life. I hope you continue (or start) to speak your truth as you work toward living what your own best life looks like.
Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
Thanks for the article. I encourage you to keep moving forward on your journey and keep making important noise about your progress. Be well.
Thank you for the support Maryan. I appreciate it. - Shawna