5 Years of Patient Support – the LDUK Online Community

Over the past 5 years, the Lyme Disease UK’s Online Community has grown from two founding patients, Natasha Metcalf and Louise Dean, to a community of over 9,500 members from across the UK and further abroad.

Whilst it is wonderful that so many patients and their loved ones who are concerned about Lyme disease have joined LDUK’s Online Community, it is also bittersweet that so many need advice and support.

During the summer of 2018, over 200 people a month were joining LDUK’s Online Community. We saw daily posts from new members with photos of ticks attached to either themselves or their children, requests for advice on rashes, and reports of summer flu, fatigue and other acute Lyme disease symptoms. Each new member was uncertain of what action to take next and whether or not to go to their GP to bring up the possibility of Lyme disease, to ask for a blood test or to ask for antibiotics.

Who are our members and why do they join the LDUK Online Community?

No two LDUK members have quite the same story, although most people fall into three main categories. These are those who have been recently bitten, those who have been recently diagnosed after years of ill health and those who have not yet been diagnosed, who are looking into Lyme disease as the possible root cause of their multi-systemic symptoms. We have patients with acute Lyme receiving antibiotic treatment from their GPs and those with late stage Lyme who have no choice but to self-treat or opt for private treatment. Every member is desperately trying to navigate the complexities of the diagnosis and treatment for a disease that is still so poorly understood. Each individual is seeking support, advice and a chance to connect with other patients.

For late-stage Lyme patients, after the initial relief of finally getting a diagnosis, there is often a feeling of isolation and uncertainty. Not only do you, your family and friends not really understand the disease, the same applies to your employer, benefit agencies and most crucially, your doctor. Patients often feel stigmatised and confused about where to turn for treatment and support. For the sickest, there is the very real fear that without help, this disease may end their lives. This is a terrifying and desperately lonely situation to be faced with, especially when feeling dreadfully ill and often outwardly appearing to be completely well due to the fact that Lyme disease can be an invisible illness.

LDUK offers a safe port in this storm. There is always someone online who can empathise, who can provide advice and reassurance that there are others are living with this illness and who can spread hope by letting people know that members have recovered and regained their health.

How will the landscape have changed for UK Lyme disease patients five years from now?

This year LDUK is making five birthday wishes…

  • Greater public awareness of Lyme disease
  • More patients receiving an early diagnosis and adequate treatment
  • Desperately needed research into Lyme disease
  • Treatment regimens established for late-Lyme patients which are offered on the NHS
  • An end to the stigma surrounding Lyme disease so that patients can discuss Lyme disease freely with their doctors without feeling judged and undermined.

The LDUK team will continue to push for better treatment for all Lyme patients and for our collective voice to grow louder. We will ensure that patient stories are continued to be covered by the media to raise national awareness and we will strive to prevent new cases of Lyme disease with our annual awareness campaign, ‘Wake Up to Lyme’. We aim to normalise the discussion of a disease that has been subjected to so many myths and assumptions on such a global scale meaning that even the possibility of its existence in a chronic form is frequently brought into question.

Whatever the future holds, we know that Lyme disease patients will always be steadfast in their support for each other and LDUK will carry on providing a safe and welcoming haven of support and advice to all who need it. Thank you to all of our members who contribute so much to our community.

Happy 5th Birthday LDUK!