Two of my strongest feelings are conflicting with each other, and I’m not sure what to do.
I have a lot of trust issues when it comes to medical professionals. When you look at my history, it’s not hard to see why.
I also have very passionate feelings about medical research. I feel it’s so important to focus more on the “less profitable” health issues. Money should not be the deciding factor! And yes, this is a bit selfish, because I want to see new treatments come to market for conditions that I have, and for conditions that my friends have, too. Not to mention the millions of other folks out there.
There is a group studying the rare form of sleep apnea my father and I have. My doctor wants my father and me to participate. Not only would we each provide useful data on our own, but we’re first degree relatives, which would be very useful for the researchers! My father has already sent in the forms. I have been holding onto them for over a month. I just can’t seem to sign.
The work is legitimate. The researchers are legitimate. I am not worried about giving blood samples or doing sleep studies. There is no logical reason to not do this.
But I can’t seem to sign the papers. I am worried about how the information might be used. What if it’s not kept confidential like they say it will be? Of course, this could be a risk with my regular medical records, too, but those feel more necessary. This is entirely optional.
I should do it. I want to further research. It’s my responsibility. How can I continue to rail against the system when I refuse to participate in it? I want to do this. I honestly do want to do it.
If only I could calm my fears.
What would you do? Have you participated in research at all? If so, how do you feel about it?
Chronic Rants 
Is it Central Sleep Apnea?
I’ve participated in an extensive Neuropathic Pain Study and a Low Level Light Therapy trial. I would participate if able. It can be a little scary in that we don’t exactly know what to expect or how to trust until we become comfortable with the researchers or doctors conducting it. I too have trust issues and I think those were by biggest concerns. I hope this helps you somehow. x
Thanks Twinklev! It’s great to hear your perspective. And yes, it’s central complex sleep apnea.
My Mum had a rare disease and I was always having lots of tests, bloods etc growing up. Then they found the gene that caused it and I didn’t have that disease nor my children. I didn’t stop going until I was about 22. So it took a long time.
I would give it a go on the proviso you can stop if it causes you pain or distress. Also you can ask what they are testing for and how they use the information.
Good luck xx
That’s a good point Lorna, I could definitely stop if it becomes an issue. I just hate to sign paperwork that gives such leeway.