What is the most valuable aspect of be... - HealthUnlocked Blog
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What is the most valuable aspect of being part of your community on HealthUnlocked?
SaskiaHUHealthUnlocked137 VotersPlease select one:
you have a family who understands your pain when your own family does not support you or understands because they are afraid of the unknown. julie
Or do not have close family for support. This is my CKD family for support.
All of those answers are important to me. I learn so much from others, gain so much from articles and info we share. I love the opportunities to be an advocate and work on research projects. And the emotional support is so helpful and wonderful.
All of the above are important, at different times of our journey through diagnosis, realisation & acceptance of your conditions, treatment or management, and the future beyond.
I found this really difficult to answer as all the options apply to me at different times. A F isn't a steady progression although we all expect it to progress. Just when I feel things are settling down and I feel reasonably confident and secure with my situation , it jumps up and bites me again. Then I need to go back over everything I have heard and read. I re-need the emotional support, the wisdom and education from others, and I feel I am always learning something new about this condition. My life would be much more unsettled without this wonderful community.
All of the above really. It's like a warm hug when you're having a bad day. We all have our own stories and journeys and it's good to know your not alone in how you feel x 🤗
All the above... I'm an advocate and ambassador on another health site, and love communicating, sharing experiences with people, and giving/receiving support.
I initially joined to get information but I also really appreciate sharing experiences with others and giving and receiving support.
I also initially joined for education and found much support from others.
All of the above. Couldn’t pick just one. Just knowing there’s someone to talk to who really does know how you feel or really can answer your questions. Particularly during COVID when it feels like the NHS want to be there but just haven’t got the time or resources to treat AND support you. These forums ease anxiety, provide support and trusted information. Glad I found mine.
All of the above, there is so little offered by my doctor, even less when you are searching on line.
excellent information from other members about specific issues in treating PMR/GCA
I've never met anyone in real life with my conditions, knowing they are out there has changed everything for me.
When all else fails, support is still possible.
Most of the above applies. I found myself in no mans land when first diagnosed with virtually no information and nowhere to turn. This site not only provided information but massive support from its members. The friendship I have found on here is second to none and I wouldnt be without it.
I am afraid I copy your information onto aftercancers.com as so much of it deserves a wider audience because it empowers us to ask for better care.
I find the (PMR) site so informative and supportive. It’s somewhere I’m not afraid to ask questions from fellow sufferers and really wonder how I would have managed without it. Particularly as I feel my disease is way down the list of doctors’ priorities compared to those with more serious conditions, so would not have felt inclined to trouble my doctor with questions and would have felt very much in the dark as a result so thank you! 🥰
Two way exchange, learning from other members and telling of my experiences, this then builds into support and feelings of being cared for.
They are all important. I cannot prioritise one
I clicked on OTHER. It has been useful to get ideas on how other people have managed the condition. The advice given is not a cure but it's handy to learn what people have tried to alleviate pain and discomfort.
Primarily joined this site as my first Haematologist was numbers driven so for example treatment would happen at x. This site opened up a new world where many more things are possible and information on research being carried out around the world. . Warmth and fantastic sense of humour a huge added bonus. My second Haematologist was a recommendation from this site and he was excellent.
this site is like a big family that is always behind us no matter what is going on in their lives...great support living with MS....
The most valuable part of being part of a community on Health Unlocked for me is the emotional support and building friendships with those who have similar experiences to me.Thanks for including me as a part of your survey. I enjoy taking part of them.
The comments under this post are so informative 