Skip to Accessibility Tools Skip to Content Skip to Footer
The Downside of the Internet: Unwanted Advice

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.


This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Daniel Malito moderator
    1 year ago

    @katieruane Katie, you should try to eat more turmeric.

    Ha ha sorry, coudln’t resist trying to make you laugh. I get it man, I feel like RA is second only to cancer in terms of people telling you about “some thing” they heard that helped “some guy” that they knew at work. I happen to have both so I get it double. I swear if someone tells me about glucosamine one more time…. Keep on keepin’ on, Daniel P. Malito (Blood-cancer.com Team Member)

  • Katie Ruane author
    1 year ago

    @danielpmalito HA!!! That did make me laugh actually…funny guy….

    I shall keep on keepin’ on and I hope you are able to too.

  • Crystal Harper moderator
    1 year ago

    You’re so right- people can be very cruel without even realizing it. I couldn’t believe some of the things people said to me while going through treatment and even after treatment. For me, I found that the best thing to do is laugh some of the comments off because of how ridiculous they were, but I also found that I stopped sharing so much of my story publicly because of the seemingly endless amount of unsolicited advice I would get. I’m sorry you’re going through this, but I’m so glad you shared how you felt on the topic because I think a lot of people can relate.

  • Katie Ruane author
    1 year ago

    Thank you so much for reading, and I’m sorry you have had to experience this as well. Hopefully this will help others and raise a bit of awareness….

  • Poll