Some of the activity on our NRAS HealthUnlocked platform has recently caused us distress at NRAS and as we are still at the start of a new year, I thought I would write a post to remind us all of the purpose of this forum and press re-set. I recall clearly the first time the original founder of HealthUnlocked visited us in our first offices in Maidenhead to talk about his idea for a new community health forum, back around 2010/11 I recall. We were one of the first HealthUnlocked forums to be established and I believe we are one of the largest in the UK. With support from the HealthUnlocked team, NRAS are extremely proud to have been able to build such a strong and thriving on-line community with the purpose of supporting anyone and everyone affected by RA or other forms of inflammatory arthritis.
I’ve lived with this awful disease for over 43 years now and am in the process of recovering from my 21st surgery – another left ankle replacement revision done at the beginning of January. So, I’ve had a bit more time than normal to reflect on what 2024 may hold in store. The news currently is universally awful, multiple wars causing unbelievable levels of human suffering, young people being killed on our streets in the UK, babies being left in shopping bags, floods and the impact of climate change in so many countries, there’s not much to be cheerful about. But something we all have the ability to do is to be kinder to others who, like us, are also living with chronic disease. People turn to this forum to find empathy, information and support. It’s awful when people start to pick on each other, say things from behind a computer screen that they would probably never say to someone’s face and criticise each other harshly. This is not what this platform is for, and we all need to remember that everyone’s experiences are different. We don’t preach, or lecture, we should be using our experiences to offer support and comfort and if you can’t do that, then say nothing.
It's NRAS’s job to keep this forum a safe, friendly and supportive place where new people can come to get help. New people don’t want to land on HealthUnlocked and discover the members fighting each other like kids in the schoolyard! Please people, I know the vast majority of you are a fantastic bunch of individuals who are incredibly helpful and supportive and have generously shared your experiences to the benefit of thousands of people who visit this forum. Let’s make 2024 a year to remember the purpose of the forum and be kind and considerate to all our visitors and members.
Thank you for reading this and supporting our Forum.
Ailsa Bosworth
National Patient Champion
Written by
Ailsa-NRAS
Partner
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The recent disturbances were caused by one person - which when you consider how many members are on this site it really shows how 99% of the members rallied round when the deleting & re-writing posts by that one person was exposed, It proved that nobody was being unkind…they had been tricked into making what seemed like unkind remarks ….but the remarks they made were to a different post from the one left on show.
That one person has hopefully learned a lesson…..& if they stop their antics, ….I’m sure we will revert being the happy little bunch we have always been!
It was distressing to be verbally attacked and accused for no reason, on many occasions over the past six months and despite reporting and messaging admin all I was told was done was to remind the person of the standards of the community. The fact the person was deleting their nasty rants so admin didn’t see them, only what was said by those attacked, made it seem like those responding were in the wrong. To say people were “acting like kids in the playground” is insulting when I doubt many of the posts were seen by admin as they were deleted once the poster got their response. It didn’t help that they could just rejoin with a different name and carry on their verbal attacks.
This group is majorly very supportive and positive, there haven’t been any big disagreements for years. It’s hard not to respond when accusations are made but I feel things were allowed to slide and not dealt with promptly to ensure they didn’t escalate too. Just my thoughts 😔
Well said KittyJ. If you had received an appropriate response and support this could have been nipped in the bud. Definitely not a situation that this wonderful group was responsible for.
Hello Alisa lovely to hear form you. I met you once at one of the regional meetings, I always say if you can't say anything nice then don't say anything at all. This forum has been a lovely place to be as well. xxxx
Thankyou Ailsa, I have never seen any unkind posts but they have obviously happened, I have learned so much about RA since joining this forum. All of society need to be kind and respect each other.
Thank you so much for posting this Ailsa, so good to have your personal support and I send you my warmest wishes for recovery from your latest surgery. Like you I have had RA for over 50 years and 25+ surgeries, I remember meeting you at the inauguration of NRAS, so thank you so much for all your hard work for people with RA and JIA.Wherever someone is on their journey with this disease it will be different for everyone, we are all unique individuals. We are here to support each other and kindness and compassion are paramount. No-one has all the answers but understanding and empathy can make a real difference to someone's day.
I did not see the post alluded to which sounds horrible, but criticism of any kind has no place in a forum designed to support. We have to walk in the shoes (where possible! of someone to really understand.
Thank you for this very pertinent and timely message particularly, (but not wholly), in view of recent events. I'm sure you have expressed what many of us have been feeling.
I also thoroughly support your comments about not lecturing others, and dismissing or minimising their concerns. I know we can all misjudge things sometimes (definitely including myself in that🙄), but generally speaking, kindness costs nothing, and can turn a person's awful day into something a bit brighter and hopefully even relieve a bit of fear or worry.
I wish you all the best with your recovery from yet more surgery. I'm a bit behind you having only had JIA/RA 41 years😉, but have also had multiple operations. I know how wearing, both physically and mentally, it can be to have to gird the loins to go through surgery again. Although I've not had the pleasure of ankle replacements or revisions (had fusion instead), I have had other replacements and revisions, and am aware that revisions can be extra bloomin' hard work and extra irritating as you've already been through it before! 😡
I sincerely hope the ankle beds in well, stays firmly where it should, and gives you many years of good service! 😊
Thank you Kags! I'm hoping this one will see me out however, the other ankle will probably need revision at some point. It's a bit like painting the Forth Bridge, once you finish one bit it's time to start on another!!😬
Haha!😁 Yes, I know what you mean .... there's always more work to be done.🙄 Perhaps we'll just forever be a work in progress??😉 I wouldn't mind a fresh coat of paint, though!🤔😆Best wishes
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