The Downside of the Internet: Unwanted Advice
I have my own style of using social media - as we all do, I suppose. Since my diagnosis, it’s definitely become a place of ‘brain vomit’ for me. Or being highly sarcastic...normally about myself. The problem with the internet and the written word is that you don’t hear the tone. I have changed my bio on Twitter to include the line ‘not looking for answers’. When I am, I make it clear that I’m asking a question I want a reply to.
Twitter is now horrible in so many ways and I would close my account. But, it’s a place for me to get things out of my head. To tweet in the moment. To stop circulating thoughts. Most know that that’s what I’m doing. And others think I’m looking for advice and give it. When I don’t want it. And it makes me angry.
The many examples of unsolicited advice
I absolutely hate unwanted, unasked for advice. I’ve had to learn not to do it with my work hat on. I hate it even more when people suggest things that aren’t possible because they don’t understand my cancer. One person once told me there was definitely a trial I could do. They were absolutely certain. I thought it strange my consultant hadn’t offered it, but it was at a different hospital in a different part of the country. So I had a look. And I wasn’t eligible. I can’t tolerate the dose you have to take in a trial. So this very well-meaning person actually really upset me. Gave me false hope. Because they knew nothing about me. They saw I had CML and thought they had the answer. They didn’t.
And when people offer suggestions to me on how to manage my fatigue....trust me, I know what I need. I’m a science degree qualified Naturopath. I know my stuff in terms of things to help the body naturally. It’s a side effect of the drugs. And nothing can change that. And when I am given a break, my leukaemic rate shoots up no matter how much turmeric I can manage. Sadly, it is what it is and I have accepted that as much as I can. I do the best I can on a daily basis and refuse to go on a quest to ‘fix myself’. The damage that could do to my mental health is too big a risk to take.
And when others tell me about the drug they are on and how it’s great for them. I. Don’t. Care. This doesn’t help me. I have tried them all. ALL OF THEM. And no. None of them are great.
Remembering that people mean well
And the worst is when someone tells me that they are going to be allowed off treatment due to a trial that I wasn’t eligible for because they have achieved the magic numbers. Well, that’s heart-breaking to me. And in all honesty, I want to tell them to F-off. But I don’t.
Because they mean well.
So I try to not let it get to me. To say something nice about them trying to help me. When in fact, I just want to get out of my head what’s in it and move on.
What type of blood cancer are you or your loved one diagnosed with?