Tick-borne disease in maine, Part III: Living with Lyme, the patient

By Paula Jackson Jones | Oct 07, 2017

Imagine you are sick and your doctor is unable to figure out what is wrong with you. Imagine being sick and nothing relieves the growing pain and debilitating symptoms that you struggle with every day. Imagine friends and family walking away, all because you’re sick and no one can figure out why.

Lyme disease is often called “the great imitator” because it mimics so many different diseases. It can attack multi-systemic and vital organs. This not only makes the doctors' job more difficult when you do not respond to treatment, but as a patient, you quickly discover how the medical community and even friends and family view your illness.

Many of you know my personal story ~ misdiagnosed for more than two years by more than two dozen doctors and specialists before finally getting the correct diagnosis, in treatment for more than six years and now in remission. Those who know me know my journey was anything but easy. It’s not only the disease itself that patients fight, but against the stigma that they are crazy, depressed and drug-seeking. When tests reveal there is nothing wrong with them, amidst the pain and despair, friends and families turn away, no longer willing to tolerate the complaining or the denial they perceive the patient to be in.

Last week, I shared about the controversy surrounding Lyme and explained the two standards of care. Doctors take the Hippocratic Oath, promising to first do no harm, but depending on which standard they follow, harm is sometimes inevitable.

All lives matter ~ no matter the disease ~ all deserve compassion and the best possible care made available to them.

Jenny was an active youth, into softball, dance and theater. Ben ran a successful telecommunications company out of state and summered in Maine. Angele was a history major with a love for the arts. George was a successful entrepreneur with a lavish lifestyle. Stephanie was a senior business analyst at one of the largest health insurance companies in the country. Tracey was a professional goldsmith, making beautiful jewelry. Thia was an active, energetic individual who took her love for teaching to the highest level, obtaining her doctorate, becoming a school principal with certification as superintendent by the age of 35, and taught a graduate program at a local college. Hannah was a student full of life, light, color and music, known for her warmth, compassion and understanding.

Real people, educated people, with active lives, families, jobs and dreams.

Dreams until unexplained symptoms began to occur and medical providers were unable to figure out what was going on. Hundreds of thousands of dollars spent on tests, scans and medical visits, all producing more questions. Diagnoses didn’t fit and treatment options failed. Hijacked by an illness misunderstood by many that left them frustrated, desperate, clinging to whatever hope they could find and all too often let down. Referrals to mental health providers left them feeling downtrodden. Pleas to find out what was wrong were met with dismissal. Some were told by specialists, without being examined, that if they were already treated then they were no longer sick and in time would be fine. Some were refused further treatment and office visits. Some were dismissed as patients because of their insistence.

What did all these people have in common? They were sick, chronically ill, further confirmed by tests and providers who not only had greater knowledge on tick-borne disease, but who took the time to treat them as human beings. Their journeys to health and wellness have been ongoing. Some lost friendships along the way. Marriages were broken. Some experienced financial devastation. Some made suicide attempts. All because they fell through the cracks of a divided medical society. They were mocked, reduced and dismissed. Left on their own to either live out a debilitated life or …

Sadly, suicide is the second cause of death for so many burdened with Lyme and tick-borne disease. The pain is too great and they lose faith in ever getting better, lose their support system, lose financial provisions, their homes, their marriages and all hope that life will ever get better.

I am happy to say that I know each of these individuals and all are doing very well. Some are still in treatment, but all found a renewed strength from deep within when connected to a provider and told “I’m not going to give up on you. We will find the answer. Have faith.”

You can find their stories in greater detail on my Lyme Time blog on my website, mldse.org.

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