How popular pieces of advice apply to the rare disease community
Patients and caregivers often excel at practicing what they preach
I think it is more effective to watch for good advice instead of asking for it.
An Inc. article titled “25 Excellent Pieces of Advice That Most People Ignore” covers words of wisdom that often go in one ear and out the other. “It’s easy to find someone to tell you what you want to hear, but your true ally is one who tells you what you need to learn,” the author writes.
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.
Advice for the rare disease community
The National Organization for Rare Disorders explains that, too often, those in the rare disease community “are left isolated and without answers to their medical questions.” That’s why events like today’s Rare Disease Day, which generate awareness and support, are so important to patients and their families.
When my son Cullen, 25, was diagnosed with pulmonary arterial hypertension (PAH) in 2008, we were fortunate to seek care from a specialist who thoroughly and compassionately answered our onslaught of questions. The same was true as we prepared Cullen for a rare heart and double-lung transplant, which saved his life in 2014.
Answers to medical questions are crucial, but so are the big picture questions like, “How do I live a quality life with PAH?” or “What will life post-transplant look like?” We turned to our allies, the pulmonary hypertension (PH) and transplant communities, who advised us by not only sharing their medical histories but also welcoming us to witness their journeys.
It’s been my experience that patients and caregivers are successful at applying the 25 pieces of advice listed in the Inc. article to life with a rare disease. Often, their lives depend on it.
Following are five pieces of advice from the article and examples of how they have a bearing on the PAH/PH and transplant communities.
1. “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.
2. “Don’t make assumptions. If you don’t know the situation fully, you can’t offer an informed opinion.”
This is a valid statement, but when you’re living with a disease that isn’t always visible to the naked eye, you may need to prepare informed responses for when others make assumptions.
It’s said you can tell a lot about a person by the way they handle tangled Christmas lights. This is also true for how a person handles accusatory questions such as, “Why are you parked in an accessible space?” “Why can’t you participate?” and “Why are you napping?”
3. “Be patient and persistent. Life is not so much what you accomplish as what you overcome.”
Ask a PH or transplant patient what advice they’ve applied to their life the most and many will choose this one — and then show you how.
4. “In order to get, you have to give. If you support, guide, and lead others, if you make contributions to their lives, you will reap the best rewards.”
This is why patients and caregivers raise PH awareness, because when we all support, guide, and lead, then that support and guidance is readily available when we seek it ourselves.
5. “Don’t try to impress everyone. The unhappiest people are those who care the most about what other people think.”
Patients may tote oxygen concentrators, wear protective masks, and use accessible parking placards. They sometimes drive mobility scooters, and often take naps, miss parties, and dress comfortably, impressing on others the importance of why they do so.
I invite you to comment and share how the rare disease community follows other pieces of advice. What advice do you provide through examples?
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.