Its Hard at first to share our DX,but I have been at this for 11 years so I actually have even spoken in front of groups and I am part of the MPN team who give advice to other people who are on our journey. I may listen to people, but I am the one who is walking in the Myelofkiibrosis shoes. Unless the person giving me advice is a MPN expert I take what they to say like a grain of salt. I drive my own bus and decide what path to tske with the help of experts , with that I decide who gets in my bus and If I do not like what they have to say I ask them to leave my bus. You must be your own advocate . I have gone through several Dr 's I believe in 2nd opinions. Be in charge of our own journeys. God is Good and I do talk to his all the time. Good Luck all.
I kindly listen to them. I thank them and tell them I will think about what they said. You have to be able to filter what you hear from others. YOU are the captain of your ship and must be at the helm of your life. Talk to your doctors, read, research, and learn what works best for you.
We live in an age of opinions and the idea that free speech includes sharing whether or not appropriate.
Most people including us here mean well, and sometimes miss the clues that our opinion and/or experience sharing either misses the mark or is otherwise unwelcome.
I mostly ignore free advice and thank whoever offering. If someone is taking on that authoritative know it all stance despite clearly being clueless about what they speak, I will then decide whether or not I will calmly educate them. If a family member, maybe depending on who it is and whether or not it is important for me for them to be enlightened. If someone other than family, except in these discussion groups, I mostly will diffuse if possible and ignore.
With these discussion groups I think sharing is better than not. That is why we all are here… to get ideas for coping, information gathering, a safe place to cry, vent, or celebrate a small victory in our own particular situation. If we here with our best intentions miss the mark, then an enlightenment expands our own personal knowledge.
I personally have benefitted here from all of that.
Yes I can understand how one feels about unsolicited advise. I feel best policy will be to share your problems on need to know basis. If some remarks are made about your health . Just smile away and change the topic.
We never share your personal information with anyone.