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What is your best Rare Disease Day advice?
It’s Rare Disease Day! Participate by watching for and showing good advice.
In the column, “How popular pieces of advice apply to the rare disease community” I share five ways I see the rare disease/PH communities offer good advice by showing how they live their life.
An example from the column:
“Take time to know yourself. ‘Know thyself’ said Aristotle. When you know who you are, you can be wise about your goals, your dreams, your standards, your convictions. Knowing who you are allows you to live your life with purpose and meaning.”
When you are diagnosed with a rare disease, knowing yourself also means knowing your body. This helps you self-advocate when something feels off and is going unnoticed by your doctor. Knowing the whole person helps you stay alive and well, both physically and mentally.
What is the best advice you live out daily? What is the best advice you have gained by watching others who are living with PH?
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5 Replies
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Hi @Colleen , I loved reading this article by INC you shared in this creative take of a column for Rare Disease Day!
I can relate to this part of your post and love that it is true:<b style=”font-style: italic;”> “I think your true ally is someone who shows you what you need to learn by practicing what they preach, especially when they don’t know you’re watching.”❣
But, many excellent reminders and advice are in the article and your column! Well done!💜
As a patient with PH, I remind others, as I often remind myself, not to focus on the big goal but on the tiny victories, as in our Weekly Win topics! It’s so easy to become frustrated and overwhelmed when we think of all we could face ahead- but what about all we’ve already persevered through?
I bet others will also find this a creative yet helpful piece!
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@jen-cueva celebrating tiny victories is a good example! This pertains to caregivers as well. I know that caring for Cullen when he was a child with PH I learned to celebrate tiny victories which I think helped Cullen do the same.
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Hi, @Colleen , we can all learn to celebrate small victories. I do not doubt that Cullen did learn that from you and Brian.
You know earlier I was on a call with a rare disease organization and shared how the children with PH always teach me so much about resilience and also mindset. When I’ve been at times when I think I can no longer keep PHighting, those little burst of energy and hope comes from our tiniest heroes! I may not think about this daily, but when my seasons are dark, this is what helps me along with my support and faith!
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@jen-cueva your words are so touching! I believe the old and the young can support each other through the PH journey. We all have something to learn from each other, that is why I wish we could get more youth to join the forums and/or PH parents.
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Hi @Colleen , thank you for your kind words, my friend. I, too often how we can gain the interest of young adults and PH parents in the forums. If you have any ideas maybe we can discuss this with Kevin at our next meeting. It seems many stay busy on social media and never make it to the forums. I’m the opposite lately, the only social media I’ve been using is LinkedIn. But hope to be better with social media in the upcoming months.
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