My First Ethical Question Mark with Chronic Illness Compensation

I’ve been sharing my life with chronic illness openly online since nearly the moment my symptoms started happening. Sometimes it might look easy or seem natural, but it’s surprisingly difficult, even for this over-sharer, to serve up slices of my life that come from pain. When I first encountered opportunities to be paid for telling my story, I was excited to have a larger platform to help others and the ability to contribute financially to my family after years of being too sick to work.

As time went on, I've found that not all opportunities to be paid for my advocacy work are the same in nature. There’s a difference between committing to one sponsored social media post, writing a purposeful article, and participating in research studies, just to name a few examples. Recently, I was invited to complete a new-to-me form of research study and I found myself having to examine my line-up of ethics through the process.

Shh – the question of confidentiality

The research study was related to Sjögren’s disease (formerly called Sjögren’s Syndrome) and I can tell you very little about it because of the confidentiality contract related to the agreement. Signing this contract gave me pause. I have previously participated in several research studies through medical institutions and they were all pretty much the same: I agreed to let them access my health data for studies of potential benefit for potential benefit to others. Sometimes there were a few surveys to complete. I didn’t have to do much other than give permission and I was only compensated once through a small gift card.

This one had a different outline. There was a set payment amount with a list of requirements on what I needed to share and how. The list included private information, such as how I manage taking daily medications, how I’ve been treated through my diagnostic process, what my disease-specific problems were and how they affect me, and how I feel about the future.

Part of me felt honored that my intimate medical experiences were worth something substantial. No one had put value to my life in that way before. A different part of me wished I could know what purpose the information would be put too. Was it altruistic? I don't have an answer due to the secrecy of the research.

Putting the work into the research

As I opened the instructions to start the research study assignments, I realized that I was actually taking on quite a bit of work. The more I worked on it, the more I felt justified in earning money for my insights because it was hard work, like any other work I'd done before.

I realized that the moral question marks that were popping up, the things that made me wonder if I should feel objectified, were feelings I held because my ingrained traditions and expectations told me that people must use their skills or sell their quality labor to earn a living. What I was doing was at odds with that mindset; I wasn't selling a skill set, my experiences of illness were rather the opposite of a skill.

It is counterintuitive to be paid for something that could be perceived as wrong, lacking, or not working correctly – all words that could easily be used to describe a chronic illness in certain situations. So how can I rationalize earning money by selling something bad about myself? My disease symptoms are not a skill set, so how can they be a monetary value?

Re-framing my perspective on the value of illness

Once I realized that the core of my questioning around the research study ethics was focused on feeling like I couldn’t add value to the project by selling experiences of something bad about myself, I was finally able to tackle that misconception. My chronic illness and resultant symptoms aren't bad, they just are. My reaction to them governs my perception of if they are good or bad.

I thought of research panels that are put together to test a product, like a body soap. Those panels pay people for their honest opinion, experience, and time. Why would my opinion be any less valuable just because it was centered around a chronic illness?

Even in writing articles, I felt justified because I am using a certain skill set to share my experience of chronic illness. I put my preconceived notions - that I can’t profit from my chronic illness just because it’s not a good thing - through the metaphorical fire.

It reminded me of a therapy session I recently had where someone asked, “What is the best thing about this challenging situation?”

In other words – even if you are in a situation that is awful, like living with a tough chronic illness, could you benefit from turning negative thoughts into provoking questions about how this could benefit you despite its nature? After all, our thoughts govern our lives and have the powerful ability to build joy and resilience if we choose that. It requires the difficult work of self-awareness and working through our emotions as we feel them instead of avoiding them.

Completing the research study with confidence

I calculated that I spent around 9 hours contributing to this specific research study. I am a long-winded person and went into a great deal of detail simply because I wanted to, so I probably could have completed it in about half the time if I had only done what was asked. But I chose to take the extra time to be who I am (and therefore talk a lot).

Nonetheless, I still figured that I earned about double the rate I typically earn from my time. My family didn't need that money any less than other hard-working people just because I'm sick.

I am grateful that I said yes to the research study. Not only did it allow me to add to my paycheck, it helped me to work through my own moral struggles about what it means to work when you’re living in an illness that makes it hard to do traditional work. I allowed myself to walk through the challenging questions instead of avoiding them. And I think I will ultimately be a better advocate for it.