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Why Doctor Appointments Can Be Traumatic When You Have a Silent Disease

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It has been four years now since I began treating my late stage chronic Lyme disease and co-infections. The journey to that diagnosis was long, trying and time and time again I was shut down by numerous doctors and specialists. In my heart, I knew something was going on. Since I was only 10 when I first got sick, once I got into adulthood and had more control over my health journey, I began to truly dig deeper and deeper into what was going on in my body.

About 10 years ago, while living in San Diego, I met a woman who told me about her own health issues. She had an autoimmune disease and used acupuncture and yoga as a means to help alleviate her ailments. Coming from a small town in northeastern Pennsylvania, there was not as much of a following of eastern medicine and philosophies. At that point, I did not even know what an autoimmune disease was. The whole thing was intriguing and foreign to me. I wanted to learn more because it sounded a lot like what I had going on with my own health.

Stepping into this world of medicine and philosophies helped change my mindset. I began to see eastern and western medicine very differently. I saw how health issues are not so black and white. How each play an important role in the path to healing. Therefore, I began seeing doctors on all ends of the spectrum. I worked two jobs, went to school full-time and spent all of my time and money getting to the core, the root of what was going on with me. This very much isolated me. I stopped going out as much. My health was rapidly deteriorating and I knew I had to find an answer soon. My health became my full-time job, my obsession and my drive. The hope for an answer was all I had. It is what got me up every day and kept me going.

Although this path was the one I needed to take, it was by no means smooth. I was on low income health care through the state of California and therefore went to a great deal of clinics. I was referred to different doctors and specialists numerous times. Each time I needed to wait six or more months for the referral to go through. There were three separate occasions my referral was lost and I had to make another appointment to get another referral and wait another six months, only for it to happen again.

I was not until 2014, after hundreds of doctors that I was diagnosed with late stage chronic Lyme along with he co-infections of Babesia, Bartonella, Mycoplasma, Epstein Barr, metal toxicity and CIRS. I also had intestinal parasites and a good deal of viruses due to my immune system being non-existent for over 20 years. I was a toxic waste dump. My first Lyme-literate doctor I saw was wonderful, but not a good fit for me. He hit me too hard, too fast, and I ended up in and out of the emergency room until I was guided back to Pennsylvania to live with my parents where I was taken care of by them and my fiancé until I could walk, bathe and feed myself again. That took three and a half years.

After three Lyme-literate doctors, I did end up with a great fit. Each doctor I have worked with has moved mountains. Currently I am in a rebuilding stage. I need a lot of little things taken care of and a firm grasp on the complexity and seriousness of my illness. At this stage I also have to work with doctors that do not understand much about the disease. Going in for my general practitioner appointment, handing them my two-page list of meds and explaining to them the complexities of my treatment is always hard for me.

Trauma can show up in the simplest of interactions. All it takes is a few words to trigger an emotional response and it is different for everyone since all of our experiences are so different.

The anxiety that a simple checkup can cause is dense. It is a heavy weight that I will have to explain myself, stand up for myself and confidently say I have a disease that most doctors think can be easily cured with six weeks of antibiotics. Each doctor has their own opinion and sometimes this cancels another out. So many opinions, so many suggestions and so much to think about all the while still being very sick. It is exhausting.

Going in to any appointment for me is still hard. It triggers a flood of emotions, but I also know that I need to be going through this discomfort to get to where I want to be with my own health and some days, that is all I need to keep going. It doesn’t make it easier, but it makes it worth it in the end. I notice that as time goes on, more doctors are willing to listen and learn from me. It has taken me years to talk to doctors and family openly about what I have gone through. It has taken time to handle the questions, the doubt, the looks, the judgment and feel confident in myself when I walk away from the conversation. I now know whatever I said was the truth and it is up to the other party to do what they want with that.


Originally published: April 14, 2018
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