LYME

WHEN DOCTORS HURT INSTEAD OF HEAL

by

whendoctorshurt

Far too often grappling with a chronic illness is a fight not only for your health but also for your dignity. Many times the medical community can unintentionally compound the pain of those suffering by minimizing their experience or even invalidating them entirely. It can take years or even decades for some patients to get an answer to what is plaguing them, and for some the diagnosis never comes at all. Here are some actual responses I have encountered from doctors in my 15 year journey to getting my diagnosis of Lyme disease.

“Is it possible you’re feeling depressed from all the weight you’ve put on this year?”

Earlier this year when my symptoms seemed to be worsening with greater intensity than ever before, I went back to the drawing board so to speak and decided to pursue fresh eyes on my case. One of the doctors I visited listened for a couple minutes as I described my worsening pain and fatigue and how totally disabling they had become, and offered this remark in response. I had mentioned when describing my concerns that I had put on 30 lbs in the course of 6 months, and I had intended to offer that as a symptom pointing to the seriousness of my worsening condition. For the rest of the appointment this doctor consistently circled back to my weight not as a symptom, but in his opinion the root cause of all of my health issues. When I asked about further testing for Lyme disease, I was met with questions about my diet. When I described my increased dependence on my cane, I was questioned about my exercise routine. I left the appointment with handouts on why this doctor believed most everyone should maintain a vegan diet (despite the fact my history of seizures requires a high protein diet to manage, as noted by my neurologist right there in my chart,) a referral to a nutritionist, and a prescription for antidepressants he said could help me “jumpstart” my efforts to get up and moving more. Sadly, this is a common story in medicine today. Patients with higher BMIs are often written off as inherently unhealthy, and their symptoms attributed simply to poor diet and lifestyle choices rather than considering their weight may itself be a symptom of a larger underlying problem. Because of the additional shame of feeling blamed not only for their weight management issues but their worsening health as well, overweight patients are more likely to stop pursuing answers entirely, as its easier to avoid the uncomfortable and fruitless appointments rather than continue to be subjected to the relentless suggestions their weight is the real problem.

“Sometimes miscarriages simply happen. It’s the body’s natural way of stopping a pregnancy that would likely not have been viable for one reason or another. When they happen early, there usually isn’t a real ’cause’ other than that.”

To date I have had a total of 7 miscarriages, most all of them in early pregnancy. I was eventually able to have a couple doctors consider more serious possible root causes, but only after that number began to climb, and more often than not my concerns were met with a regular insistence that “these things happen.” I’ve had more statistics about the commonality of miscarriage offered to me than I can possibly recount. Pregnancy loss is an emotional experience in and of itself, and having multiple unexplained miscarriages adds an additional dimension of confusion, guilt, and anxiety to grapple with. In the end my pregnancies were marked as “high risk” because of my history of …

MAMA HAS LYME

by

mamahaslyme

“Does your child have any special challenges I should be aware of?”

Two tiny blank lines staring at me, enough for maybe three sentences if I wrote very narrowly. Yes, Aidan is on the autism spectrum, and has a variety of specific learning challenges in the classroom, but there was already an IEP file explaining these things at length. There wasn’t space here to revisit those again.

“Does your child have any special challenges I should be aware of?”

Two tiny blank lines, waiting for me to explain. My face was beginning to flush and I could feel the fog in my brain growing thicker as I grew more and more flustered trying to turn thoughts into words on this cheery yellow paper. The neuropathy in my hands was making it harder to grip the pen and I could see the words on the page start to shift out of focus the longer I tried keep them in view.

“Does your child have any special challenges I should be aware of?”

I scribbled out lightly, “Yes, I have Lyme disease.”

The pen slipped once again from my now tingling fingers. I stared at those two words: Lyme Disease. How could I begin to explain just how much having a disabled parent would impact my child’s school year? My guilt was growing palpable as hot wet tears began to dot the page. How could I tell his new teacher just how much my son has to overcome because his mama simply isn’t like the other moms in his class?

When other children are gently woken by their parents each morning, my son usually uses an alarm to get up for school, just in case mama isn’t fully awake in time.

When other children come downstairs to a hot breakfast, my son often gets himself his own bowl from the cabinet and pours his own cereal, because he does his very best to save mama’s very limited energy for other essential tasks.

When other parents are walking their children to the bus stop and are there waiting when it returns each afternoon, my son walks himself to the corner each morning and walks back each afternoon alone, because we live on a steep hill and mama very quickly runs out of breath and has trouble maneuvering it with her cane on bad days.

When other parents are helping their kids diligently with homework, my son has a mama who can’t always remember things like spelling and math because her neurological symptoms make these tasks difficult at times.

When other parents are volunteering for field trips and class parties and positions on the PTA, my son has a mama who tries desperately to keep her parent teacher conference appointment, but may have to show up looking less than presentable if she’s able to make it at all.

“I have Lyme disease.” Those words were blurred beyond comprehension, and I could no longer tell if it was from the tears filling my eyes or the nerves misfiring in my brain. The guilt was overwhelming, and it was more than I could take. That would have to be enough on that for now. I strained to make out the last question on the sunshine colored page so I could just finish and retreat to my bed.

“What are some of your child’s greatest strengths?”

Empathy. The word came to me almost immediately. Empathy. It was quite incredible for a child on the autism spectrum to be so marked by empathy, but in Aidan’s case it was true. We hear it from teachers, from friends, from …