What is it like to live with a chronic condition that is not recognized? On Living with Lyme.

 

The Center for Disease Control does not recognize chronic Lyme. Unless you live with a condition that is not recognized or covered it’s hard to understand the extent to which the lack of recognition can put us and our health in danger. There are many really shifty and unethical things that allow the lack of recognition to continue. I highly recommend folks watch the documentary Under Our Skin for more understanding both about what it can be like to live with chronic Lyme as well as the political climate that keeps the disease unrecognized and untreatable. It’s available for free viewing: https://www.youtube.com/watch?v=RlvDVTKbNMQ. This post isn’t about how it works the way it does, instead it focuses on the implications for those of us living with the condition.

This post briefly overviews some of the difficulties involved but it is by no means comprehensive!

  • It’s hard to get diagnosed! How do you have something that doesn’t exist? The official stance of the CDC is that after a course of antibiotics, any health complications are due to something else going on for a person. I’m not sure why it’s important to take 1 course of antibiotics for early Lyme if there is no later stage. Hmmm.
  • Treatment is spectacularly expensive and entirely out-of-pocket. This means that my health is way more solid than it was two years ago but we are a bit of a financial mess. It also means that my lower income friends continue to get sicker without access to treatment.
  • There is no funding for research. There could be a potential cure. There could be the capacity to further explore the link between Lyme and other conditions such as Alzeimer’s, ALS, MS, but if something is not recognized, we cannot advance our understanding of it.
  • We have to hide our condition when talking with health care professionals. That’s right, I let “chronic Lyme” slip when I was in emergency for heart attack imagessymptoms and they sent me home with Ativan because in this system “belief” that you have Lyme = hypochondriac. I didn’t tell my primary care physician so that I won’t have my other symptoms dismissed but this means that I have to be spectacularly vigilant and well-researched about contra-indications because I can’t tell them what meds I take for Lyme. As a result, my friends who don’t have research skills or who are suffering from acute brain-fog from Lyme can wind up in some dangerous situations!
  • No one knows if we are having a Lyme complication or have developed a new condition. Right now I am facing the possibility that I have Hashimoto’s. I would love to know if my blood work results are indicative of my body fighting Lyme or is a new condition, but this expertise is not available.
  • We don’t get accommodations. I don’t have a Handydart bus pass. I don’t have an accessibility license plate. I can’t file as a Person With Disabilities at my work. Folks with chronic Lyme are not eligible for disability benefits. We are outside any legal accommodation requirements no matter how impacted by the conditions.
  • Our conditions are often chalked up to personal failure rather than medical neglect. And after days, weeks, months, or years of nonstop pain, sometimes the “it’s all in your head” response can be the last straw with our capacity to cope!

If you are dealing with this, I see you. I know that you struggle without recognition and without nearly enough resources and accommodation. This is not your fault. It’s due to neglect, horrible policies, and practices. If you do not have chronic Lyme, your knowledge as to what we face is critical. I urge you to learn more about the CDC practices, to write letters of protest, to help organize rallies demanding recognition, and above all, to show up in practical ways for those who are battling this condition and this system.

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3 thoughts on “What is it like to live with a chronic condition that is not recognized? On Living with Lyme.

  1. Hi there! I was diagnosed with Hashimotos 3 years before Lyme. However, in my research I have read the Lyme likes to attack the thyroid immediately. I’ve been treating Lyme for 4 years now and my doctor has been checking my thyroid periodically stating all is well (I’ve been on 100 mcg of synthyroid daily for years). But I recently started seeing a functional LLMD and she did some different labs and said my thyroid is not at optimum. She added another thyroid med and we’re checking labs this week. But I can say that a lot of the fatigue has lifted!! Anyway long story to say please keep pushing to make sure your thyroid is working well. Let me know if you want more info about the Labwork. I wish my 1st doctor would have been more diligent and concerned about my thyroid function. Great post too!! Take care!

    Like

    1. Oh yes, I’m on it. It’s just so frustrating that these links are not better researched and integrated into medical training so we have to do so much guess work and pushing. I’m so glad you have better care now!!

      Liked by 1 person

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