Last updated: July 2022
It's bad enough coping with blood cancer, as the number of decisions are endless, and depending on the disease, the options are a lot to absorb. But what happens when you share your plan of action and others give you negative feedback or their unwarranted opinions?
Sometimes we may know people who speak like experts on subjects that are extremely serious, and decisions we are making with our cancer are not to be taken lightly. How do we deal with these pseudo-experts?
My early myeloma days
I recall my early myeloma days when I was seeking any and all information on how to conquer cancer and make it right. At the time, a popular radio host in New York had a segment of healthy alternatives, and there was a guest who worked with people with various health ailments. Well, we crossed paths and had a phone conversation that left me clutching my pearls.
I told him that I was diagnosed with multiple myeloma, a form of blood cancer. I was told I would have to start chemotherapy at some point. His response was, "Now, why would you want to do something foolish like that?!"
You may not agree, but you should respect my decisions
You can imagine the response struck me as insensitive, as the only reason I contacted him was to hear of how he helped other people with chronic issues (allegedly) and such. I didn’t ask for him to put down another option and quite frankly, a popular one. The decisions we make around our cancer may need to be quick and sometimes we want to see what are all the options out there.
However, some people have a way of making you feel like going with what is typically thought of as the standard in care is wrong. These people may not fully understand what goes into wanting answers and solutions, but respecting our choices on this journey means a lot.
Let’s just say I ended that conversation with little gained but being upset in hindsight of how he challenged me.
It's up to us to advocate for ourselves
After a while, I think you learn who you should be taking information from, as well as looking into other ways of care and management. Whether you decide on the conventional methods or something else, having a path of respect from fellow patients or family is a game-changer. I believe that as adults you are now responsible for yourself, and sometimes it’s up to you to step out and speak up for yourself on those important matters. I continue to scream to the hilltops of advocacy!
I suppose this post should be more for those being care partners than those dealing with blood cancer. I would just say – listen and respect as many of the decisions that come our way are not easy to make, and sometimes we may get it wrong but that is part of our journey to figure it out, hopefully with your companionship... or not.
The time to fight is now, with integrity, grace, hope, and a smile... when you feel like it
How do you feel about your support system?