Living with Lyme disease can damage both your body and your soul. How do you take care of yourself, emotionally?
This May it will be five years since I was diagnosed with chronic Lyme disease and 20 years since I first started getting sick. Sometimes, I look at those numbers, look back on all the years, and I’m speechless. I don’t know how I’m still here, but I am. And I intend to stay.
Today my dad and I drove down to Maryland to see my new Lyme doctor. His wife also has Lyme and—like my first doctor who saved my life—I liked them immediately. He sat and listened to my story, asking questions about my symptoms and then examined me.
“How long have you had these stretch marks on your abdomen?” he asked.
“For as long as I’ve been fat,” I joked. Then I explained how I put the weight on—a lot and quickly—since I’ve had Lyme, and again when I relapsed.
“They’re going the wrong way for stretch marks,” he noted.
I looked at him, somewhat surprised. “Bartonella rash?” I asked.
“Bartonella rash,” he confirmed.
My body is what I’ve been the most insecure about since dealing with Lyme. When I was sick with mononucleosis in middle school I “blew up,” so to speak, gaining weight rapidly, unable to lose it. Eventually, when I was in high school, I did lose it all and rather quickly. I only wish now I had been more confident in who I was back then. Now, all these years later, I wish I could match what I feel on the inside—strong and brave and beautiful—with the outside, when all I see when I look in the mirror is someone who’s tired and weighed down by this disease.
Ah, but isn’t that just the way it goes?
Now that we’re able to recognize that bout of “mono” as my first brush with Lyme—now that I’ve experienced my second rapid weight gain—I’m starting to understand how this illness ravages the body and the mind. Stubborn weight gain is not unusual in that the bacteria damage the metabolism, thyroid, adrenals, and gut. It’s disheartening, truly. It feels like no matter what you do, it won’t make a difference.
Except it all makes a difference. I’m not going to lose the weight until I start getting better from this disease, I know that. But that means I need to reaffirm my dedication to my recovery—eradicating the infections with a new cocktail of antibiotics, reducing the inflammation with nutrient-rich foods and supplements so my organs start doing their jobs, and building my immune system strength so my body can learn to fight on its own again. It also means more patience on this journey, continued self-care.
I’m not doing anything wildly different as far as a treatment plan. Tweaks to the antibiotics, changes to the supplements, re-focusing on healthy foods, and exercising only as much as my stamina and the illness will allow. But once again I’m armed with renewed hope and determination. Once again, I’m ready to do what it takes to be healthy again.
Or, you know… For the first time.
This disease has been hell in so many more ways than one. It’s broken me time and time again, over and over. But it’s also forced me to face what I didn’t want to face, making me into someone I hope is better and bolder and stronger.
These past five years, I’ve spent so much time healing emotionally and spiritually. I’ve spent so much time trying to build back everything I’ve lost. I’ve spent so much time rediscovering who I want to be and learning to believe in and love who I already am inside.
Now it’s time to accept and love who I am outside. It’s time to accept and love my body for all it’s been through, to forgive myself for what it is right now.
Love is love.
Reflected inside and out.
The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
*Opinions expressed by contributors are their own. Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.