Lyme Disease is caused by tick bites, sometimes so small that their significance is not realised at the time by patients or medical staff. Patients face denial and doubt of both their symptoms and the existence of the illness as a whole, despite many years of research into the impact of the condition.
Patients suffering from Lyme disease find themselves suddenly faced with confusing and conflicting advice surrounding diagnosis and appropriate treatment. UK Infectious Diseases consultants tend to hold the view that Lyme disease is easily treated with short courses of antibiotics. If patients find that they are still unwell following this protocol, they find that they have nowhere to turn for further treatment.
from Guidance for Counsellors and Therapists supporting Clients with Lyme disease
created by Lyme Disease UK
As a result patients have many knock-on problems and Lyme Disease UK was prompted to create an information sheet for therapists and counsellors.
The guide starts with giving a helpful overview of the condition, along with historical background around ‘gaslighting’ and medical misunderstanding. It continues by explaining how this impacts patients’ lives in many areas from their finances through to social stigma and trauma.
Your client may have experience of:
- low self-esteem/lack of confidence due to not being believed or understood as well as feeling a burden on family and friends.
- feeling stigmatised following difficult conversations with a variety of healthcare professionals and feeling pushed from pillar to post, due to the multi-systemic nature of the disease. The stigma felt by patients has been compared to how HIV/AIDS patients felt in the 80s. Due to unreliable testing and no clear treatment or referral pathway for patients with late stage Lyme, consultations can be difficult as the patient may feel that they have been either misdiagnosed or abandoned.
- breakdown of relationships with family and friends and social isolation due to unpredictable symptoms and not being well enough to take part in social activities, often over a long period of time. Sometimes due to difficulties with confirming a diagnosis of Lyme disease, patients can feel that their friends and family don’t believe that they are ill or are exaggerating the severity of symptoms.
- financial hardship caused by lost earnings, not qualifying for benefits as the illness is not recognised in its chronic form, the cost of funding private treatment etc. It is not uncommon for patients to resort to fundraising within their local community to enable them to access private treatment.
- trauma of delayed diagnosis and physical symptoms being attributed to psychological illness, patients are sometimes told that their symptoms are ‘all in their head’. (Note that Lyme disease can cause psychiatric symptoms in some patients).
- suicidal thoughts and feelings of despair and desperation Patients may feel reticent to share experiences and feel demoralised following previous failed attempts to be diagnosed and treated
from Guidance for Counsellors and Therapists supporting Clients with Lyme disease
created by Lyme Disease UK
It relies on therapists’ existing skills in dealing with trauma and the ongoing social stigma faced by patients who have Lyme Disease. It may be that more detailed research is needed into the nuances of supporting patients in these circumstances – it would be fantastic to see more research.
Read the Lyme Disease UK fact sheet
