What to Consider If You’re Asking a Patient to Become an Advocate

Some of the most successful campaigns, be it fundraising initiatives or trying to raise awareness, capture the attention of donors through personal stories. These personal stories are used in a way that is meaningful for the patient, while also highlighting the importance for others who may be less familiar with the disease. The stories focus on raising awareness for a campaign or initiative, and help others truly understand the importance of human connection through the selfless act of blood or organ donation.

There are many other campaigns that use personal stories for a different — but equally important — reason, such as raising money to maintain studies or begin new research into diseases and treatment. Whatever the goals are of these campaigns, whether they are to raise awareness or money, there is one common theme: there are humans with raw emotions sharing their personal stories.

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For those with any type of life-threatening illness, including idiopathic pulmonary fibrosis (IPF), there’s a good chance you’ve been asked to be part of a campaign for your disease. Maybe you’re a young adult diagnosed with IPF (which is considered rare) or the recipient of a new set of lungs, or maybe you have beaten the odds for survival, and a campaign with the goal of raising awareness has approached you to tell your story. Would you do it?

It’s common for patients to be asked to be advocates or to be asked to share their personal stories for a campaign. However, it’s important to remember that most patients have (at some point or another) endured very difficult news and painful treatments, and experienced the emotional trauma of facing a life-threatening illness.

MORE: The invisible impact of trauma on pulmonary fibrosis patients

Below are some considerations for organizations, companies or campaigns to consider when approaching a patient about being an advocate or part of their awareness or fundraising campaign:

Be clear about expectations.
It’s easy for miscommunication or misinterpretation to happen between patients and organizations or companies. What might be perceived as a small miscommunication or misinterpretation by an organization could have a significant impact on a patient. For example, maybe there is a small or intimate part of their story that a patient does not want shared, and if this is accidentally published in a campaign, the result could be emotionally devastating. Companies also need to be clear about the time commitment for patients, both initially and on a regular basis.

Recognize the vulnerability that comes with sharing personal stories.
To be the “face” of a campaign exposes a lot to a very wide audience, especially if it’s a campaign that showcases a patient’s personal story, battle or journey with a life-threatening illness. This is even more true if the campaign shares photos, prognosis/life expectancy or the physical impact (such as scars) of the disease to increase awareness. Recognizing the vulnerability that comes with sharing personal stories also means respecting patients’ boundaries, and not pushing to showcase what a patient might be uncomfortable with for the benefit of a campaign.

Be professional and respectful in interacting with patients.
Understandably, the people behind these big campaigns are very busy doing exceptional work, but being professional and respectful means responding in a timely manner and using courteous, polite language. It means not placing blame if a patient cannot meet expectations, and understanding that managing their disease and symptoms is a patient’s top priority.

Don’t ask too much of a patient.
Be mindful that for some patients, participating in one campaign does not open the door to ongoing participation in any/all campaigns. Sharing a story once, for a targeted campaign does not mean that a patient wants their story to become to the face of an agency or campaign.

MORE: How pets benefit pulmonary fibrosis patients

Pulmonary Fibrosis 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 another 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.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

2 comments

  1. Evelyn says:

    Excellent article! It’s coming from the heart of a patient balancing their own mortality and still reaching out if they can help others!

    • Charlene Marshall says:

      Thanks Evelyn! I really do think it is so important to help and be there for others, especially during a time of shared experiences. This isn’t always possible for patients who are navigating their own trials and tribulations, but when it is possible, there is so much good that can be found in supporting others through something you are also going through. I really appreciate your comment 🙂

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