Breaking the Stigma of Late Lyme Disease

Breaking the stigma of late Lyme disease

There’s nothing quite like lived experience as a catalyst for igniting passion for change.   I feel completely surrounded by this passion as part of the LDUK team and member of the wider Lyme community. Despite ill-health, the care for other patients and desire to prevent others going through the same experiences shines brightly from so many individuals and groups. It’s a truly wonderful community to be part of.

Following my own experience of diagnosis and treatment of Lyme disease and co-infections, I was keen to volunteer with LDUK to try and help improve the situation for Lyme patients.  I want to help break down the stigma of living with late Lyme disease and provide much-needed support for a neglected patient community. No one should have to pay or travel for treatment for a bacterial infection, or feel stigmatised by a diagnosis.

What is it like to live with late Lyme?

When I meet fellow patients for the first time, there are often a number of things we have in common:

  • Long-term, puzzling, multi-systemic symptoms
  • Difficulty and delay in getting a diagnosis
  • Appearing well although feeling physically awful
  • Self-funding private treatment or aspiring to do so due to lack of treatment options on the NHS
  • Emotional trauma caused by symptoms being disbelieved or misunderstood by doctors, friends or family, most often all of the above.
  • An almost tangible sense of bewilderment and disbelief that it is possible to suffer with such a debilitating disease and be left to be your own advocate for diagnosis and treatment.

It sounds rather bleak and sadly it is. It’s not at all surprising that people who are on this unusual and isolating patient journey feel kinship by meeting others going through the same experience.  Discovering that you’re not alone can be hugely comforting and sanity-saving.

Patient stories of acute and late stage Lyme

You don’t have to delve too deeply into experiences from the U.K. Lyme patient community to get the gist of the issues and clues as to how they might be solved.

The repetition of patients’ experiences of misdiagnosis at the acute stage of the illness tells its own story. Missed diagnosis of an erythema migrans rash, over-reliance on unreliable tests, the common myths repeated day in, day out, that Lyme is rare, easy to treat and hard to catch. In some cases, the impact of missed opportunity for early treatment is startling physically, psychologically, socially and economically. ‘That’s when I stopped work’, ‘my daughter hasn’t been able to attend school this year’, ‘I can’t drive or stand for very long anymore’. Others even more unfortunate are restricted to wheelchairs.

In the most severe late-stage cases people go to extraordinary lengths to try and regain their or their loved one’s former health. The family who uprooted their lives to go and live in the US for a year to access IV treatment for the dad. The mum who organises regular fundraising events to pay for her son’s private treatment. The patients who travel to their doctors for days by boat because they are too unwell to fly. Perhaps most shocking of all, the  patients for whom private treatment is not an option and who are scared, suffering and fearful of whether they will ever recover. Support is absolutely crucial for these patients and their families.

Lyme disease is a disease, not a decision

Late Lyme disease patients are just people who got sick, yet for some inexplicable reason empathy is harder to come by than you’d expect. Media articles use the language of blame and ridicule in a way that would never be acceptable for patients with a disease by any other name.  A particularly baffling perception of Lyme disease patients is the notion that we ‘want’ or actively seek out a Lyme diagnosis. Sick people tend to universally want the correct diagnosis and treatment to get better. Why would sufferers of Lyme disease be any different?

In a world where stigma of any kind is less tolerated than ever, people with Lyme disease are being left behind. The work of the LDUK team and other groups and charities in the U.K. and around the world are helping to change this.

If you know someone who is living with late Lyme disease, please reach out and show them your support, even a text or call to say that you hope they are doing ok can mean the world!

Hope for a tipping point

The education, research and culture-shift required for patients with Lyme disease to be treated adequately and with respect and compassion present a huge challenge the world over. With passionate and curious doctors and researchers and a growing, global patient community and charities working for change, I have hope in my heart that a tipping point may come. It’s now just a matter of time.

by Ann Gregson