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April 6, 2011

"But You Look So Good"

This photo was taken earlier this week. Me and Liv.
This is the hardest thing I have heard time and time again from those who do not understand my Lyme disease.  The past eight years I have been very sick but doctors, family or friends could not identify the distress my body has been under.  This disease is not like jaundice or chicken pox where your skin indicates the sickness from within.  This illness is much more hidden and displays itself through fatigue and bizarre neurological symptoms.  

The most deceiving thing about my disease is I look the same as anyone else only I am extremely sick on the inside.  I have antibiotics flushing through my veins nine hours each day, a limited diet, 20 pills to take, nasty drops and liquid medicine, time-consuming exercise regiment, the inability to drive or take care of myself independently, but, yes, I do look pretty much the same.

I love this excerpt written by my Lyme specialist because I feel like he really understands me and my sickness. 

The Biggest Challenge for People With Lyme Disease
People with Lyme disease are generally really sick, and have been this way for a long time, but their families, doctors or friends sometimes don’t believe that they are unwell and their insurance companies often won’t pay for their care. As a result, they feel isolated, as if they have been living in a twilight zone, or are going crazy.  So they develop a mistrust of others, and even themselves, and they start to question whether they are legitimately sick.  The second-guessing and this burden of guilt that people develop from being so pushed aside, is the number one most difficult aspect of having Lyme disease. But truly, people with Lyme disease are some of the sickest people on the planet, and treatment regimens are some of the most complex that I can imagine in medicine.  I have had patients on up to fifty different medications and over one hundred and fifty herbs at different times during their treatment.  Treatment regimens are so complex, but often, Lyme patients can’t even cognitively “get it together” enough to listen to instructions about what they need to do to get better.  They aren’t healthy enough to manage their own care, but the only way to heal from Lyme disease is through a lot of self-management, so they are stuck in all of these catch 22’s, and there are just a few ways out.  So it can be very beneficial to have friends and family members who can help them through it all.”
- Dr. Steven Harris, M.D. Insights into Lyme Disease Treatment


  1. You are lucky to have this guy as your Doc. I read the rest of that article online somewhere and he is bang on in much of what he says. We have next to no LLMD's in Canada. Pretty much on our own up here. Good luck in your journey.