Lyme disease is a complex condition that can leave many of us feeling alone. We don’t always know where to turn, doctors don’t understand our symptoms; family members can’t always relate, and friends often struggle to see our pain. That’s why LDUK is so important – we have an amazing community full of support and advice, and we also welcome family members and friends who want to learn more about how to best support their loved ones.
This is our last post celebrating our 5th birthday so we wanted to hear exactly how the LDUK community has helped since being founded in 2013, and the response was outstanding. Thank you to everyone who contributed with such kind, positive and inspiring comments!
**
‘LDUK gave me the support to look for answers to my declining health when I was at rock bottom a few years ago. Without the kindness, support, encouragement and knowledge within this group I would be in a much worse position, of that I’ve no doubt. I’m proud to be a part of the admin team, it gives me a sense of purpose. I’m also so grateful for the wonderful friends I’ve made along the way .’
**
‘Lyme is a disease that no one understands… except people in this amazing group. Thank you for making me realise I am not completely crazy and this is not all in my head… because, sadly, I felt this way for a very long time before I joined this group. I also like how peaceful and constructive the group’s awareness campaigns are.
One more thing I love about this group, is opportunities like this one to share a bit of who we are and what we like. Thank you for giving us a voice as well as support.’
**
‘The group freed me to realise that it wasn’t in my mind and that I was right to follow my instinct.’
**
‘Whilst in the depths of excruciating pain, here I found belief, compassion and solutions whereas elsewhere I found none of these.’
**
‘Realising that I am not alone. Prior to joining this group I had never spoken to anyone else who had this illness.’
**
‘The treatment path we are now following would not have happened if it were not for this page and the support to carry on when things are tough.
Most importantly hope and knowledge, I love the stories of people now able to carry on with their lives. Thank you.’
**
‘I found being a mum of a Lyme sufferer very lonely, people were sympathetic, but they didn’t really understand fully or get how devastating this illness can be. Connecting with the community has helped us to move forward as a family and however horrible life becomes, I know we are not alone.’
**
‘It’s made me realise I’m not alone and my symptoms aren’t unusual which helps knowing and learning how other people manage them.’
**
‘This group of amazing people have been there for me in my darkest hours when the light at the end of my tunnel was more symptoms. They’ve laughed, cried and spurred me on to keep fighting when all I’ve wanted to do is curl up into a ball and go to sleep and never wake up again. I honestly can’t thank you all enough. I’m now stable and living the life I used to lead for the first time in 6 years. I’d also like to say that I’m antibiotics free for 6 months.’
**
‘I find it hard not to get emotional thinking about [how the community has helped me]. This community has given my kids their mum back. When I joined LDUK, I honestly thought that I was the only person in the world to have my bizarre set of symptoms when I was having such a difficult time getting diagnosed and listened to by doctors. Then the loneliness and despair and fear of coping with a Lyme diagnosis was so painful. Without the kindness of people in this community I would still be struggling alone and probably wouldn’t have found treatment or improved my health over the past 3 years. I will be forever grateful.’
**
‘Maintained my sanity whilst guiding me through this parallel universe. I found my treatment and doctor through all of your advice and compassion. I’m on the road to remission after 29 years of despair.’
**
‘Such a mine of information. So nice also to be able to talk to people who ‘get it’. And you just don’t get it until you got it.’
**
‘Confirmed what we thought and pointed us towards testing/treatment/healing. Lifesaver.’
**
‘I’m forever grateful for the openness of LDUK, which allowed someone to post openly about biomagnetic pair therapy. About 3 years ago my daughter started this therapy, having been very ill for many years. TODAY………..she’s only set up her own FB business page!! Not only did she get completely better with BMPT, she went and trained to help others. I hope this is not seen as advertising, it’s far from it. It’s just my way of saying a massive THANK YOU.’
**
‘This group pulled me out of a black hole when I was at my worst. It’s helped me grow in knowledge and given me the support I needed throughout my 6 year struggle, and now I try my best to give back to others in need.
I have to give full appreciation to [name removed for privacy] who was always there to back me up when I was lost even when she was very ill herself, she’s amazing.’
**
‘Wonderful, intelligent, helpful people, wonderful info, a place to bounce around ideas when stuck, a place to have a laugh with people that get the craziness of our world, a place to ask for support from people that understand when it all gets too much and just somewhere you can hang out where you don’t feel like you are talking a foreign language to the rest of the world!’
**
‘Advice and understanding – when you have absolutely no help anywhere else. Invaluable, thank you.’
**
‘I feel I am not alone. The Lyme community understand. There is always someone to help at any time of the day or night.’
**
Thank you to everyone who shared with us!
For me, LDUK has been a lifeline – I am and will always be forever grateful for it. The community has inspired me to keep fighting, I’ve met truly amazing people who’ve become dear friends and the cheerleading and love within the community is fabulous. I have family members who are also in the community and it really helps them understand what I’m going through and how they can best support me.
As always, we should be proud of what we’ve achieved, how far we have come, and the level of support we continue to give each other.
Never EVER forget that you DO NOT have to fight Lyme disease alone. Whether you’re a patient, a friend or a loved one, LDUK endeavours to offer support to everyone.
Sophie Ward.