Tell us about your HU experience for our NRAS magazine!

Hi everyone,

I'm putting together the Winter magazine and I wanted to highlight the fact that we have reached 6,000 members on HealthUnlocked! It would be great to share some comments with our members about how this site helps you all and it would be great to try and encourage more people to join this wonderful community.

If you are happy to feature in the magazine, please leave your comments below!

Thank you,

Dani

Media & Communications Officer

NRAS

13 Replies

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  • Hi Daniela,

    The NRAS HealthUnlocked site offers me an oasis of understanding and shared experience in the dark, lonely world of being newly diagnosed with RA.

    When my Dad died my Mum found the hardest thing was not having someone to share her daily experience with, no one to talk about the 'little' things with. Being diagnosed with RA, for me, has been a similar isolating experience as few understand fully how the disease affects the entirety of a suffer's life and on this site I can talk about the 'little' and the 'big' with no one trying 'fix' me or judging me as 'weak' for feeling physically and/or mentally crappy at times.

    Ali

  • Thank you Ali, I am so glad that this site has brought you so much support. I will make sure to include this in the magazine.

    Daniela

  • When I was first diagnosed I really found it difficult to get out of the house due to pain and mobility problems. But I found HU and no longer felt on my own or isolated. I helped me realise there are many other RA sufferers out there who could support me and I owe them my new life.

  • I see Health Unlocked as an invaluable link to fellow sufferers which is so easily accessible, it's as if they are in the room with you. Any time you are worried about some aspect of your illness, the medication you are taking, or just feeling low or helpless, there's always someone quick to reply with help, advice, or a sympathetic shoulder to cry on. Giving help and support to others in return is so rewarding. It's always good to know there are so many lovely people out there who are unfortunately in the same position. Angela.

  • The company delivering my biological medicine has proven very unreliable, and this has been a major stress for me over and above dealing with my illness. I've received support from others on NRAS HealthUnlocked who are also struggling to get their biological medicines delivered in a timely fashion and NRAS has taken an active role in trying to advocate for us.

  • Hi Dani,

    Since being diagnosed with Spondyloarthropathy a few months ago, this forum has been a godsend to me. I know I can come on here and get answers, advice or just have a general chit chat to other members who know exactly what I'm going through and how I'm feeling. The forum has definitely been a lifeline to me, thank you xx

  • Hi Daniella,

    What does the NRAS health unlocked site offer me?

    I am not alone with my RA. Only other people with the disease really understand what life is like with it. I did my first post in February I had a chest infection and was having a bad flare too. I was crying and feeling really sorry for myself. I didn't know what to do with myself I grabbed my I pad and went to the site . Within a few moments I had a response, a life line . I was not alone I had a fellow sufferer offering support. Many others followed.

    Patsy-57

  • I have found the HU site very useful and empowering. I do however have problems getting some of my replies to post and then I end up losing it and find it pretty frustrating, as I'm not the fastest of typers.

    Is there anything that can be done about it?.

    Regards Sleepynellie.

  • Hi Sleepynellie,

    Sorry to hear you are having some problems with the site. If you contact support@healthunlocked.com to explain what's going on and how you access the site (desktop/tablet/mobile) and also which browser you use (Internet Explorer, Google chrome etc), that should help the team work out what the problem is.

    Best wishes,

    Ruth Grosart

    NRAS Digital Media Coordinator

  • The HU forum is really good for helping with isolation. RD can be a very isolating disease because it impacts on almost all aspects of a sufferer's life. It is very difficult for people who don't have it to understand how it feels. Indeed, I can barely understand it myself.

    Having somewhere I can go for a bit of advice and support from people in the same situation is amazing. And its a bonus that I don't have to physically move very much to get to that place because it is online. I also don't have to struggle to articulate how bad it can get. The people on here already know and many of them have gotten through bad times and come out the other side. Just knowing that is priceless.

  • I find the health unlocked site a great source of information and the support given by other members is wonderful , there are so many nice people here who are in the same boat, it's easy to feel isolated , especially when first diagnosed , it's scary , so it's good to know that there are others experiencing the same problems and there's no such thing as a silly question. there is always someone going through the same as you and it's sometimes just good to have a rant and get it off your chest . no one understands what you are really feeling unless they too have RA .

  • Thank you so much for your comments everyone! I will put as many of them as I can squeeze in to the magazine so do look out for it in the new year!

    Dani

  • Jusr seen this. Maybe too late but HU stopped me from giving up my job. I used the site to find other RA suffers. I was overwhelmed with reading. I put out a blog asking how others managed work and an engineer convinced me I would be okay. All through the webpage. Im back at work taking meds and am getting reasonable adjustments at work in the form of dragon voice activated software. Im grateful to RU and all the support people can access outside of their homes. The members are so positive and helpful its amazing.

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