In the bleeding disorder world, there are often opportunities to earn a few extra dollars. Research companies, pharmaceutical companies, and reporters will often reach out to members of the community to learn more about the disorder for their research.
“Honorarium Offered” is a subject line in an email that will often get my attention. If I am the kind of person they are looking for, a caregiver for a child with hemophilia A, I often take part. Why pass up an extra $100 or an Amazon card if all I need to do is fill out a quick survey or share part of my story?
I recently took part in an interview that lasted an hour with the promise of a $100 honorarium. A few weeks went by and I had not received my payment. I sent an email expecting a response, and another week passed. Another email and another week with no response.
When I called the contact, both numbers did not allow me to leave a message. I finally called the corporate offices and was told I would have someone call me back within 24 hours. I never got the call. When I called again, I could never get a person to answer the phone. I figured I had been duped and I was not happy.
It wasn’t that I was upset about the $100; I was upset because I felt as if this company took advantage of me and may have been doing this with others in the bleeding disorder community.
Taking advantage of people who live with a chronic illness is wrong. We share out of the goodness of our hearts because sometimes we just need to be heard. I went on social media and left word everywhere to not accept interviews from company “X.” My last attempt was to email the president of the company.
I received a response with a seemingly heartfelt apology and a promise of an increased honorarium. If I would not have spoken up, nothing would have changed. The person who initiated the interview would have thought that they could treat our community poorly by not following through. I even had a friend on Facebook tell me that she participates in these interviews and surveys often and doesn’t keep up with the promised payment. We should keep up and make sure that we do not allow anyone to take advantage of our situations. Our stories are too important and precious.
While some may think that accepting any kind of payment for sharing my story regarding hemophilia is taking advantage of my son’s disorder, I believe that any chance I am given to share my story and educate others is worthwhile. I am not only passing along valuable information to the interested party, but I have another opportunity to redeem the experience of living with hemophilia.
When you have bleed after bleed, hospitalization after hospitalization, mobility challenges, physical therapy, joint damage, and an inhibitor that never seems to resolve, your stories are often filled with heartache and despair. Getting to the point where you can take some of those experiences after some time and healing and share them with others is a redemption like no other.
It doesn’t take away the pain and suffering from your experiences, but maybe, just maybe, someone else will learn something about bleeding disorders.
And they just might feel like they are not alone on this journey.