“I’m sure it’s just stress.’ I heard these words from doctors, prestigious doctors- who over the last 15 years couldn’t figure out what was wrong with me. It started out with me thinking I had a low immune system, because I was constantly getting sick. Sinus infections, stomach bugs, colds, viruses. Then I started getting eczema and tingling in my feet, hands, and face. I had tons of digestive issues and was diagnosed with IBS. Functioning with all of these symptoms became my new normal and I was able to push through. And since doctors didn’t find anything abnormal in my blood work I convinced myself it really was just stress. Then three and half years ago, I went on a trip that involved lots of hiking on the west coast. When I came back home, I immediately had flu-like symptoms that never really went away. The symptoms I were able to ignore before started to become debilitating, and new symptoms started popping up every few weeks. During the next year I developed severe headaches, fatigue where I could barely get out of bed, lightheadedness, muscle pain, dizziness, memory issues, brain fog, heart palpitations, nausea, constant stomach pain and indigestion, bladder pain, swollen and painful lymph nodes, tingling, burning sensations, foot pain, insomnia, anxiety, depression, and panic attacks.
I saw about 10 doctors that year, including general practitioners, gastroenterologists, neurologists, rheumatologists, infectious disease doctors, and endocrinologists. I was diagnosed with ‘stress,’ fibromyalgia, chronic fatigue syndrome and an ‘unknown viral or bacterial infection.’ I was so frustrated because all of these doctors told me they didn’t really know what was going on but I could take strong prescription meds to deal with the symptoms. I didn’t just want to deal with the symptoms. I wanted to know the cause!
I started seeing an acupuncturist whom I hoped could help me manage the symptoms, and she asked me if I had been tested for Lyme Disease since I had similar symptoms as her other Lyme patients. I didn’t know much about Lyme Disease- I thought you get a rash and then take antibiotics for a couple of weeks and you’re fine. Boy was I wrong. She recommended I go to a certain practice where they could diagnose and treat me. Around the same time, I spoke to a friend of a friend with Lyme Disease who went to the same practice and was completely better. He had many of the same symptoms as me.
At this practice, I filled out a symptom sheet and had almost all of the symptoms on the list. Based on testing and my symptoms, I was diagnosed with Lyme Disease, co-infections, mold, and some other infections and health issues. I started treatment, which is actually even more brutal than the diseases themselves, because all of the symptoms flare up every time you are doing any sort of treatment to kill the infections.
I felt so much relief to receive a diagnosis and validation for everything I was experiencing after being dismissed for so long. But at the same time panic set in. I was so sick I was unable to work and I had to go on medical leave. I didn’t have enough energy to shower, cook, or leave the apartment. I felt as if I were dying. All of these negative thoughts looped through my head. ‘What if I never get better? What if I keep getting worse? What if I can never work again? What if I can’t afford my treatment? Why is this happening to me?’
At the same time, my marriage was falling apart and I left to stay with a friend for a couple of months. I was traveling back and forth between apartments, looking for a new apartment, packing, and moving all while getting IV treatments, going to doctor appointments, and barely having enough energy to get out of bed. Dealing with a chronic illness alone is tough, but dealing with a chronic illness, a divorce, and a move at the same time seemed unbearable. I had hit rock bottom.
Day by day, I noticed small improvements in my symptoms. Healing from a chronic illness isn’t linear, but I noticed some days the ‘ups’ were getting better and the ‘downs’ weren’t as bad. I also looked back and realized the pre-Lyme version of myself was very different, and I loved the person I was becoming.
I used to be very go-go-go. I had major FOMO and pushed myself to go out after work and on weekends, even if I felt like staying in. I was on autopilot, rushing through life, always feeling as if I needed to be doing something to feel productive. I was always helping others, trying to make others happy, putting myself last, and had no boundaries at the expense of my own health and energy.
Lyme taught me so many lessons. I learned I needed to slow down and listen to my body. That it’s ok to rest and just be. In fact, the time I spent laying in bed ‘doing nothing’ forced me to get to know myself more, love myself more, and feel connected to my body in a way I never felt before. I learned to stay in the present since longing for the past and worrying for the future just caused extra anxiety. Being more mindful of everything I was doing allowed me to find moments of peace and happiness during some of the worst times. After being so sick for so long, I learned to appreciate even the smallest things, like being able to cook a meal, go grocery shopping, take a walk, take a shower, or meet a friend- things I had taken for granted in the past. I learned to be more compassionate and less judgmental of others. I realized we are all going through our own stuff, even if we look completely fine on the outside and kindness goes further than we will ever know.
I also realized the importance of community when dealing with a chronic illness. When I was first diagnosed I felt extremely isolated and as if no one understood what I was going through. Over time, I realized how grateful I was to have an amazing support system of friends, family, doctors, and healers who went above and beyond to support me mentally, physically, emotionally, and financially. Last year I started an Instagram account sharing my Lyme journey and I was blown away by the love, support, and wisdom of others who ‘get it.’ I have developed many online friendships, and I was able to meet some of those people face to face, and this provided another layer of healing in my journey.
During one of my hardest months, a friend sent me a quote by Jon Kabat-Zinn- ‘You can’t stop the waves, but you can learn how to surf.’ It quickly became one of my favorites. We are all hit with waves in life- some tall, some short, some knock you over, and some completely take you under. We can’t control the waves but we can better learn how to deal with everything thrown at us. Dealing with all of these waves made me stronger, more compassionate, more patient, more loving towards myself and others, less judgmental, more vulnerable, more confident, and an overall better person. Even though I am still dealing with some health issues, I am extremely proud of the person I have become, and I hope sharing my story will give others hope too.
This story was submitted to Love What Matters by Lauren Friedwald. Follow her on Instagram here. Do you have a similar experience? Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
Do you know someone who could benefit from this story? Please SHARE on Facebook to let them know a community of support is available.
Read more inspiring stories about invisible illnesses here:
‘By the time I clock out and leave tonight, I will have been in the building for 14 hours. 3 as a patient, and 11 as an employee. This is invisible illness. This is dysautonomia.’
‘It must be stress’. The doctors made me feel I was making things up. This was all in my head, and I’m just wasting their time.’