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How To Deal With Friends And Family Giving Unhelpful Advice?

A myMPNteam Member asked a question πŸ’­
Temple, PA

Some well meaning people think I should " become a vegan and the ET would go away. Use alternative therapies like crystal therapy. See an acupuncturist. Eat only twice a day and only raw foods. Cut out dairy and ET goes away." Some of them get upset when I say " no thanks, I'm going to listen to my doctors" instead.

August 7, 2023
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A myMPNteam Member

You can always just smile and tell them thank you, I will take it under consideration then I would promptly forget about it. Problem solved :D

August 7, 2023
A myMPNteam Member

Good morning, in this disease, as in many others, it is unknown exactly what produces the genetic mutations that trigger it.
I have been a vegan for 8 years prior to being diagnosed, and I have been dairy free for over 20 years. I have always been an optimistic person, and although I believe that emotions influence the therapeutic processes, I do not believe that by themselves they generate the disease. With the comments of these people I do as if I were watching a bird go by, I do not discuss them, nor do I pay any attention to them. Good day

August 9, 2023
A myMPNteam Member

That is when you can say β€œafter much consideration and research I decided against your non-medical advice.” Thank you for your input though!” 😁

August 7, 2023
A myMPNteam Member

Hi Wileen,
Solidarity!
I get unsolicited advice often and my attempts to inform the advice-givers that their advice is not OK gets them angry. They feel entitled to preach over my health. Some are relentless and it feels abusive. So I put communication limits, but it is so exhausting.
There are some scripts on how to handle this on several support groups for cancer patients. It depends how successful they are based on who is the intended audience. Sometimes I ask my therapist how to proceed when it becomes too much. Often, they suggest to put limits or to refuse to discuss my health with the advice-givers. If it doesn't work and the relationship is not important, I take a break.
The worst kind are those who believe that negative emotions cause cancer (they do not, it is pseudoscience nonsense debunked many times over). They are completely gaslighting and suggesting positive thinking and ignoring the illness as recovery. As if ignoring illness has ever cured anyone.
My 5 cents on this is that people often hold moralising beliefs regarding illness and think it is a moral failure to be ill and, inherently, that getting better is a matter of will and individual effort. And if one remains ill, then it is their fault.
Cancer is often framed as an enemy and language is very military: fight, attack, survival, hero, etc. People who unlive "lost the battle," which is cruel, given that most of the time people have little control over their illness and most survival is just luck that the cancer was spotted early enough, that it is an indolent type or that there is adequate treatment or even a cure.
This comes from people's fear regarding their own frailty as humans and fear of exitus. So when they hear we are sick, they go on to "solve" us, so that we stop being ill and we therefore stop being a reminder that illness is something that can happen.
My bigger wrong advice giver is my mom who has this noxious belief that "cancer enters where fear enters" (complete nonsense). I am aware that she is mortified of illness and her anxiety is violent, so I keep my communication with her limited to very few topics and stop it immediately when I notice she is going towards unsolicited advice.
What triggers my unsolicited advice givers is that ET is incurable. They cannot process this. I try the analogy with Type 1 diabetes, there is no cure for that, but their minds go numb, their anxiety hits high and they accuse me of pessimism for "thinking there is no cure." Which is completely disrespectful and aloof, as research suggests acceptance and planning life in a realistic way is much more adaptive for people with chronic illness. It allows for efforts to be aimed at accessing support and resources, rather than unrealistically waiting for health to magically improve.

Best regards,
Tatiana

August 7, 2023
A myMPNteam Member

Ironically, the first time when my platelets went above the limit and stayed there ever since was during the years when I was vegan. I was also doing a lot of exercise, being generally careful to keep in good health. Lifestyle might delay some cancers and some cardiovascular & metabolic disease (not all, just some), but one cannot cure cancer with lifestyle. That is pure disinformation and it is dangerous.
Due to brain fog, meditation is not possible now, as it exhausts me. But I am discovering every day things that keep me going.
Frankly, I am at peace with my illness. I wish those around would get to this acceptance themselves and stop wasting precious moments of my life with noxious lifestyle advice peddled as cure for an incurable but manageable chronic blood cancer.
Luckily, there are nice support networks like this one.

August 8, 2023

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