How has being part of your communities... - HealthUnlocked Blog
HealthUnlocked Blog
How has being part of your communities affected your life this year?
SaskiaHUHealthUnlocked340 VotersPlease select all that apply:
All of the above. This site has given great advice 👍
It’s nice to have the company of others experiencing the same medical problem so very differently. If only doctors took a look as they could learn a lot here and be more helpful as a result!
touche’
All of the options given above and more - such as being part of a community, empathising with/getting empathy from others that 'get it', being able to give/receive advice that has helped you, comradeship and being offered different perspectives.
Helping ne feel less alone.
all of them. Able to understand the terminology and going forward it’s helped with the isolation of being alone in a situation once not understood, advice and reading others situations.
No help whatsoever. Not even a reply.
Hi Hidden , thank you for your feedback. We have taken a look into your account and can see that you have not posted on a community yet, which may explain why you haven't got any help yet!
In order to get support from others, you first need to create a post within a community.
For a step-by-step guide on how to create a post, you can refer to this help article: support.healthunlocked.com/...
If you have any further questions, please do reach out to support@healthunlocked.com
I have registered, and given a description of my cardiac complaints, ie; dilated viral cardiomyopathy, and asked for advice on it's potential future effects and received no reply. Despite the positive remarks I have seen on your website, mine is not one of them. You asked me to respond to your survey today and I have seen my original post. I will not enter into a debate with you, just accept that not everyone will have a positive experience.
I tried to like what you’d written but the number went from 3 to 2 so I got it back to 3 but it doesn’t seem to be able to count any further. This seems to be something you should try to sort out as I have had this happen and mentioned it several times before.
I too searched for your posted question (s) but could not find any. Is it possible the reply was not entered when you posted? Your account shows no posts made. It’s heart breaking to me that you’d get no response when I know there are many with similar stories that would gladly offer feedback. I hope in this reading some will take the time to read your posted biography and reach out.
I also agree that not all feedback may be positive from everyone but in fairness it must be warranted and based from a place of genuineness.
Just feeling connected is comforting.
can't choose just one...this site is a lifeline in so many ways
all of the above .. as has been said.. people don’t understand about steroids and their issues .. unless they have taken them themselves or been with someone close! If I have a problem with.. for example reducing the predisolone. My first port of call is this forum. Thanks a million times.
Voting other means that I help others in my community in a Craft and coffee shop as a volunteer.
I agree with most people. All of the above. Since connecting to the site last April I have learned a lot, received lots of support, found ways to manage symptoms, and been able to help support others. I am grateful for this site. Thank you!💜
Seeing people go through the process of finding answers to symptoms is very encouraging. The access to screenings and procedures could be better when viewing it from an equity standpoint. Too many people have a difficult time with that.
Seeing the support & contributions from people who want to help and share their experiences in the effort to help another who may be struggling is amazing.👏❤️ I enjoy reading the contributions.
I communicate with so many wonderful people; I may not have the ability to physically be in their presence - but I truly feel the presence of their love and understanding!
This community of people has really enlightened me on all aspects of depression and anxiety.
Grateful for all the advice.
All the above. The site is always full of information and advice. Merry Christmas!
I was finding it impossible to locate a support group locally and feeling at a loss until I was steered to these communities by my comrade in treatments traveling this same journey. While his course took a turn for the worse I will always be very thankful to him. I really don’t feel there is sufficient verbiage to measure the wealth of support this platform provides. I will just leave each and everyone involved with my undying Thanks.
My husband passed from PSP. I now promote your site as often as possible. It simply was a life saver for me.
Many of these comments come into play here, it is a learning curve for all of us, the help and support of so many people can give reassurance at times of doubt. Their knowledge is so far beyond my own, it can often lead you in the right direction for seeking out further advice.
it’s given me confidence to stand my ground with drs if I don’t agree with them
I feel less alone as most people really have no understanding of my illness quite honestly would be very lost without this support
I was feeling lost after my husband's diagnosis of PSP. I found this site through researching his illness. I'm so glad I did.It's a virtual family. One where you can ask for an opinion, or give support to others.
I've only experienced positiveness since joining.
Feeling less alone and knowing that others are going through the same confirms it's not just me.
I haven't posted for some time as I feel the support I got when I did post has set me on the right road. I read posts every day though as there is always something I can take from the replies.
All of the above. It has affected me in a very positive way.
It's very nice being part of a caring community, in which both problems and different perspectives can be shared.
I am privileged to be ab Ambassador for National Kidney Foundation and glad to share my journey. Especially for seniors.
This forum has been a tremendous help in what has been the worst year of my life, losing my husband and having health issues. The support and help has been invaluable. I so appreciate the understanding and knowledge of the members here, and don't feel so alone. For the first time in 4 years I am being able to taper my prednisone successfully.
Janis
it’s got to be all the above..
This is by far the best health community I have found online. It’s been an amazing support, especially the great of people at PMRGCAuk. Simply amazing in their expertise and caring support.
I used to really like HU! There is a lot of good here. However, this year it has left me frustrated and feeling isolated. In dealing with the anxiety forum particularly I saw a lot of bias/lack of help from moderators while there is a group of "resident trolls" that seem immune to the rules and can have people's posts censored for arbitrary reasons. I don't really use HU so much anymore because of this- I abhor censorship and double standards, which sucks because I've seen a lot of good here
Made me more anxious about my condition listening to all the unqualified crackpots on here.
thank you saskia
12.5 years after a total gastrectomy due to stomach cancer, I haven't come across anyone with the same issues as I seem to have, been a couple close but have found it helps to communicate and I think I have helped a few people over that time telling them about my issues. One gets used to not being normal although it gets a bit tedious people telling you how well you look. Anyway an interesting site and I will continue to view comments.
The Local Community are actively Discriminative towards the Disabled where we live. Services not given and excluded has become our new normal. In this Area only. 15 miles away, attitudes are completely different.
It is wonderful to know if you are concerned about aspects of your condition there will probably be someone on the site who has been through the same and can offer helpful advice. Thank you everyone.
the forums gave me a lot more confidence in dealing my lung issue(Bronchiectasis) which had been identified by Surgery practitioner nurse after having problems with mucus & coughs every winter over at least ten years.
I am much happy now dealing with my ongoing health issue and asking Doctors much more probing questions about the condition.
Delighted with tips & helpful information provided by others with same condition.
Nothing has changed as it has been so long p 16 years since dx
No change.
This site has proven to be immensely beneficial to me, I have learned a lot and now I’m more confident to speak out about my condition. Learnt about new treatments and alternative medicine and it has really helped to know that I’m not alone in my struggles. Also very encouraging to read about other people’s little wins and how they have overcome their challenges. Thank you so very much.
great to be a part of the site
Excellent x thanks again x
Thank you for making me think and feel that I am not alone.
I have cognitive impairment, Dementia, Peripheral Neuropathy, cataracts, catheter, glaucoma, hearing problems amongst others. And I struggle to grasp things at times. But I do like to read others with similar difficulties. I find some people sound wonderful at how they cope. Thank you.
The CLL Support group is particularly active, and extremely well curated by a tireless admin team. They, as well as the regular contributors of well researched articles and supportive comments on this forum, deserve high praise.
I can't thank everyone enough for helping to make such a difference in my glaucoma journey and giving me a much more positive attitude towards this horrible, life changing disease!Thankyou ALL so much!
Thank you for all you do and being there for me
I cannot find the words to really describe how finding other People suffering in the same way as me has changed my Life. I was alone, lonely & had nowhere to turn. Now, not only have I met People who truly understand me, I'm not alone anymore & have actually made some lovely friends. I can't thank you all enough. xx