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According to the Center for Disease Control, Lyme disease is the fastest growing insect-borne infectious illness in the United States. Lorraine Johnson, the CEO of LymeDisease.org, estimates 300,000 people a year can contract Lyme disease through a tick bite. She also claims 36% of people will not get well after a month of the typical treatment of antibiotics for Lyme disease.
Michaela was bitten by a tick when she went to Girl Scout camp the summer after she turned ten. A nurse from the Girl Scout camp suspected Michaela could contract Lyme, but not much was known about possible long-term side effects in the 1980s. After the tick’s removal, the glands in her neck swelled up and her doctor recommended surgery as the best option. The physician and her parents were concerned about lymphoma because her father’s first cousin had died quite suddenly at age sixteen.
Because her parents did not handle sickness well, Michaela and her siblings were often sent to her grandmother’s when dealing with illness. The next twenty years of Michaela’s life was riddled with bouts of illness, some lasting weeks at a time. When she was diagnosed with Ehrlichia and Anaplasmosis, two types of tick-born illnesses, she was 32 and bed-ridden.
Michaela relays her experiences: “Living with long-term Lyme is an ongoing daily challenge. Because I appear ‘fine’ people think I am okay. Many of my friends have walked away because I would lock myself away in the safety of my house and had difficulty talking on the phone or reaching out. I am thousands of dollars in debt and continue to need treatment. My family has not supported me throughout this process.
“Fortunately, I have a career that allows me to work when I can and in small increments. The key to coping? Hope. I have always believed that I have the ability to heal given the right factors. When I was unable to work, life felt like it wasn’t worth living. Coming from a hard-working farming family, our values always stemmed from our ability to work and contribute. Living with Lyme is like being in a personal hell of the worst imaginable pain and suffering.”
The symptoms of Ehrlichia and Anaplasmosis are quite severe, including development of other harsh diseases in the body like encephalopathy and meningitis. Fever, headaches, chills, and vomiting are more common symptoms, but without treatment can cause death.
While the Center for Disease Control (CDC) recognizes Lyme disease, if Lyme is cured with the typical antibiotic treatment, the CDC does not consider long-term symptoms as Lyme related. Any patient with non-specific symptoms such as fatigue, pain, and joint and muscle aches are said to have Post-Treatment Lyme Disease Syndrome. The CDC claims the cause of those patients who do not respond to antibiotic treatment is unknown and recommends second opinions with other health care providers. Therefore, insurance companies, the medical industry, and pharmaceutical companies don’t continue to assist the 36% patients quoted in their ongoing life with Lyme.
Much of being an adult living with rare and/or chronic bodily challenges has prompted these women to create meaning out of less than ideal circumstances and made them aware of the human soul’s worth. Much of what is faced lends to mental and emotional terrain being healed as much as physical bodies finding comfort.
Is there a way more people in the community can support their neighbors living with bodies bent on destroying the human psyche? What if one doesn’t have living parents, or their own parents are dealing with health complications as elderly citizens?
The isolating effects of living with chronic conditions can limit one’s ability to reach out to supportive friends and family members. While the government can offer some relief through personal care workers and funding, applications to qualify for such help could be limited. Many personal care worker qualifications depend on client inability with the following: dressing, bathing, eating and preparing meals, shopping, paying bills, and getting to medical appointments. If one is not bedridden indefinitely, one would not be able to garner a personal care worker.
Many living with chronic conditions work like the general population and do not qualify for any available government assistance. Community support is so important — people helping other people with no incentive still make the greatest difference in others’ lives. Fostering bonds and relationships among our neighbors is the best way to care for anyone. Suzy (who has acromegaly) has incredible support from her mother and friends. Morgan (who has ademomyosis) has found support from her family and spouse. Michaela has had to create her own community of support around her with friends.
Finally, adults living with debilitating conditions can take creating a community into their own hands: they can be a resource themselves to other adults living with debilitating conditions thanks to the closeness of the world through the internet.
