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    • #16271
      Bailey Vincent
      Keymaster

      Has someone ever policed your body or commented on your healthcare when they are not a close, personal component of your life?

      I ask because… well, this keeps happening to me.

      I have posted online a few times about my delay in getting the COVID vaccine, and strangers [who have never commented before] privately message me to explain why this is wrong. Normally they say things like, “I’m not getting the vaccine” and then tell me why I shouldn’t or say they’re worried for me, and so on.

      I plan to write more about this soon (on my Instagram) but I wanted to get your perspective first, here on the forum. Has this ever happened to you before?

      If these were friends who had shown any interest in my health before, I’d hear it better but… I always want to say: “If you didn’t care about what I ate, took, said, felt in the past regarding medicinal choices and my care team’s suggestions… Why now?”

      I write what I know (for better and worse), and I don’t know them enough to say what they should do with their body, you know? So why say so with mine?

      I don’t write about IF someone should get it or what someone else should do (so, for the record, if you’re choosing not to get the vaccine, this is a judgement free space!) Instead, I have simply discussed what my team suggests for mine.

      Maybe it’s just me, but…. I never really feel compelled to do this with other people? Unless someone asks, I never want to say: “Hey Jenny. You should do your lung clearance differently!” or “Hey Jenny, maybe you should take ZenPep instead of Creon!” (I don’t know why I’m picking on Jenny but it just felt right.)

      Point being: This forum is a place to feel safe to express all our thoughts and feelings about our healthcare and our bodies without worrying someone will judge our choices.

      So why is it so frustrating when the rest of the world doesn’t feel that way?

    • #16272
      Paul met Debbie
      Participant

      I completely agree with you. So why is it so frustrating when the rest of the world doesn’t feel that way? Probably because, in some way, you take it personally.
      And of course they mean it personally, but you are not obliged to take it that way. It takes two to tango (as you of all people will know).

      You are respecting the freedom of others to handle their health the way they deem fit. That is a good attitude. Of course it would be nice if they would return the courtesy. Reality is: they are not (always). Try not to get too disappointed by that. People are used to give unsolicited advice, especially in the setting of social media. It is a bad habit, but there are many bad habits around. And they are only a few in your case (I hope), consider all the people that didn’t give you unwanted advice, which is still a huge majority.

      So all in all, it’s perhaps not that bad. It has not happened to me yet on this forum, but I know the situation well from friends, acquaintances and even some family members. Unfortunately, this is something you have to take in a stride when you show your choices publicly. For these cases of unwanted advice I can only say: don’t take it personally. They don’t know how to behave properly.

      Perhaps they mean well, perhaps not. But don’t even go into that. You can only set the right example yourself. Just ignore those who don’t. Smile, take three deep breaths and go on. Try to see it as a test of your emotional and mental autonomy. How else would you check your progress on the way to freedom?

      Even Eckhart Tolle, one of the well known writers in the field of mental freedom and spirituality, admits that sometimes things can get pretty difficult. Occasionally visiting his mother, he told that after two weeks he had to leave again, the strain of not losing his balance would otherwise be to much. He said: “If you think you are a spiritual being, go and stay with your family for two weeks. Then you know.” I was always very impressed with this feat.
      I must admit I would not feel up to this task. So there is always progress to be made.

      Considering the covid vaccine: last week I found myself telling my GP that I didn’t want to get an early vaccination. She offered me one, because she expected to have a little surplus in the group of patients that is ahead in the queue (my group is probably not due for some months). But I refused the offer.

      Now, the mind is able to find many reasons for this, and many against. I only know that I reacted from my intuition, and that is what counts. In a way, I surprised myself a little with it. My mind still seemed busy in trying to weigh the pro’s and con’s, but my intuition was clear. I don’t feel obliged to tell anyone what to do, nor am I going to explain (let alone: defend) my choice to anyone. I simply would not know how to, because as said, this is an intuitional decision. I trust myself in this and know that none of the reasons of the mind would truly account for anything of value – it would just be empty words. I might find myself deciding differently in a different situation or at a future moment, but for now, this is what came out of my heart. I completely trust that this is beyond good or bad, right or wrong. It is just what happened and I am fully at peace with it.

    • #16273
      Jenny Livingston
      Keymaster

      I’m actually glad you chose to pick on me because this is something that’s been on my mind a ton lately! Enough so that last week, I made a video (Instagram Reel) about the subject. Unsolicited advice almost always rubs me the wrong way, but especially since it’s become so prevalent during this pandemic.

      I understand that people who choose to write and share about their lives online (something you and I both choose to do) are opening themselves up to unsolicited advice and body policing. Is it right? No. But does it come with the territory? Yup. Even still, the number of times someone has messaged me in the last year about the dangers of mask wearing or hidden vaccine agendas has me truly baffled. Why are other people – especially internet strangers – so concerned with my personal health choices?

      Like you, I share my experiences and never tell someone else what they should do. I’ll never understand why others are so comfortable telling me what I should do with my body.

      Maybe this didn’t answer your question, but it seemed like a good time/place to air my shared frustration about this. 🤣

    • #16275
      Tim Blowfield
      Participant

      How can I encourage you? Certainly not by tearing you down, refusing to allow you to be comfortable in your body, safe in your decisions. Love is not that. Love is standing with you, supporting you as you struggle with life (and boy! CF’ers do that in heaps). Listen but don’e judge.
      There may be sometimes when a contrary argument is warranted but great care is needed.
      As to who should get the COVID Vaccine – we need to each assess the information we have, maybe seek more information, and then make our own decision.
      Information relevent to the COVID Vacc is how it may affect us but we may also consider how it may affect others.
      My assessment is I will accept the vaccine when offerred to me but that is mine.
      How can I encourage you?

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