Here is my contribution to the subject of the social drama people who live with Lyme Disease face in terms of relationships. –João
Lyme Disease is rare in Brazil and people do not know what it means to live every day with the resulting suffering. The symptoms my partner has shown like Lyme’s poliarthrits and chronic fatigue are still mild compared to those of other Lyme Disease patients who have much more neurological damage, including memory problems and speech difficulties, mental fog and lethargy. Or those who have their heart compromised by the progression of the disease. There are cases of sudden deafness, loss of vision and facial paralysis.
We know that every chronic disease represents a great test in the life of the patient and his family. It takes courage and it takes a lot of strength to deal with the situation. Living with Lyme is not easy: the treatments are expensive and exhausting for the patient and family. The immune system is compromised and autoimmune diseases can unfold.
The prolongation of this disease weakens the patient’s body and brings enormous stress to both him and his family; the latter needs enormous dedication to take care of their professional work, children, household activities and provide the necessary attention to the patient who suffers from the disease of Lyme.
We are led to study as much as possible to know the disease and look for ways to overcome it, which consumes a lot of time and energy. We make many unsuccessful attempts at treatment, which brings frustration and discouragement. We need to seek the strength of faith, hope, and confidence renewed every day – every moment – so that we don’t get emotionally out of balance and don’t get sick even more.
Emotional imbalance aggravates the condition enormously and we cannot allow for the negative evolution of the condition, as new and more serious symptoms can always appear.
We know other people who suffer from Lyme Disease as my partner does. All of them have their life stories very marked by the suffering of this pathology, as well as our family.
Some carry a feeling of sadness for the way the people closest to them deal with their health situation. There is a great lament regarding the incomprehension on the part of partners, family, relatives, friends and known people, who either turn their backs and fail to give them attention and care, or react with indifference or anger in the face of the difficulty that arises. Stressed husbands, mothers and fathers who do not believe in the pain and fatigue caused by Lyme Disease (as they think it is purely “psychological”).
Friends who disappear, who abandon the patient during the most difficult situation of their lives, cause more trauma that only compounds the negativity of the disease.
For this reason I decided to write this text. As difficult as the situation we are going through, we need to seek patience, acceptance, calm and flexibility to deal with the challenges of Lyme Disease. Medical support and a wide range of therapies are necessary. But the fraternal presence of other friends, relatives, family members, partners and companions is very important to be able to face all the limitations and problems brought by this framework.
Our society unfortunately does not teach us to deal with the suffering of others. We often see someone close to us in a clear situation of despondency, weakness and pain, but we simply turn away and move on. We shy away from offering a smile, a consoling word, a conversation that distracts or just silent company and peaceful coexistence. We make snap judgments about those who are living the test of a very serious illness in the family, which borders on despair at many times, without trying to understand what they are really going through and why they are in this situation, without asking, ‘what we can offer as a form of help,’ if not at least respect and recognition for another human being and his afflictions.
Providing Lyme patients with care, attention, affection, understanding and tolerance is a gesture of love and a way to show the other that we care, that the person is valuable to us, that we nurture affection for them. Words are important vehicles of message, but they never substitute actions.
Acting on behalf of the one who is suffering is not as difficult as it appears. If each relative, friends and acquaintances can do something for the Lyme Disease patient within their circle, directing as much of their attention and time as possible, a huge current of love and care is formed that helps a lot in healing the patient.
João Augusto de Andrade Neto – Paraty, Rio de Janeiro, Brasil
January 23, 2021 (shortened and translated to English on July 13, 2021, and posted to Facebook: https://m.facebook.com/groups/1765246543770673/permalink/2581711442124175/ )