Katie Golem is sharing her experience with Lyme disease in an effort to spread awareness and support current Lyme patients on their journey to health and wellness.
My journey begins more than 10 years ago when I started having joint pain and swelling. Naturally, I went to a doctor and was told that they weren’t sure what was going on but wanted to keep an eye on things. With time, things started to progressively feel worse for me and I was diagnosed with rheumatoid arthritis (RA) by a rheumatologist. I had a strange feeling about this because I tested negative for the RA blood marker; something didn't feel right. I have always been really healthy and athletic and being active is a big part of who I am so this diagnosis was particularly heartbreaking for me.
Because RA is an autoimmune disorder, I was put on many immune suppressing drugs. I was opposed because it felt counter intuitive but I trusted my doctor. I was also told that moving to a warmer climate might be helpful for my pain so I relocated to Austin, Texas from Chicago where I had lived for years. When I was down in Texas my new rheumatologist suggested I start on Enbrel which is one of the stronger immune suppressant drugs that you need to self-inject weekly. I was opposed to it. I was already taking plenty of other immunosuppressants and I am for the most part, against taking medication of any kind. The doctor insisted that it would be fine and I even recall her saying “If you were my daughter I would tell her to take this.” It wasn’t fine though. After my first injection I ended up in the emergency room.
After the ER visit, I started to have all these bizarre symptoms that didn’t seem RA related whatsoever. The doctors thought at first that these were negative side effects of the Enbrel, and that after the medication was out of my system I would be okay. Days and weeks went by and I wasn’t okay. My health started to rapidly decline. I was having skin reactions, muscle twitching, brain fog and severe fatigue. I had to go on disability because I couldn’t function at work on a daily basis. I went home to live with my parents and went to see many, many doctors to figure out what was happening to my body. No one could seemingly diagnose me; it was unbelievably frustrating. I have never been so depressed, so despondent, so NOT Katie; I barely recognized myself. It was a terrible time for me.
I had wanted to pursue a career in social work for a while but never went for it for one reason or another. That summer, while sick and staying with my parents, I decided it was time to finally go for it and apply to Loyola University Chicago Master of Social Work program. Being sick puts so much into perspective and I knew that if I ever got better I wanted to spend the rest of my life doing something meaningful and fulfilling. I wanted to help others.
Right around that same time I had decided to try one more doctor. She was a holistic practitioner and I thought she might have a different approach then all the conventional doctors I had seen. After talking to her about my symptoms she asked me if I had ever been tested for Lyme disease. The next day the results came back and I had tested positive. I was shocked; I don't recall a tick bite, had no idea how long I had it for and more importantly if it had been causing my joint pain all these years. The doctor indicated that the Lyme bacteria can be dormant in your body for a long time, but can become an active infection when your immune system is suppressed, as mine was as a result of all of the drugs I was taking from the misdiagnosis. I finally got the correct diagnosis 4 years after I was initially told I had rheumatoid arthritis. I had taken medications for years for a condition that I never had.
It was only a couple of days after I found out about the Lyme diagnosis that I got my acceptance letter from Loyola University Chicago. I couldn’t believe it, I was ecstatic. I was also apprehensive because I was so sick; I knew I would be taking on a lot. It would mean ramping up quite a bit in about a months time.
As far as treatment, I started on antibiotics and other protocols right away and began to get better slowly. My joint pain started to get a little better. It felt like a miracle.
Pursuing a career in social work has been everything to me and it gave me motivation to KEEP GOING throughout treatment. It gave me purpose.
I am so proud of myself for getting to where I am today. I am a licensed clinical social worker and see clients everyday to help, support, and heal. Last year I started my own solo private practice in Chicago. It’s been great.
For the most part, I am healthy. I still have lingering symptoms but I am grateful to move, work and LIVE. I am truly appreciative and grateful to have the chance to do something that I love. I realize that every day is really a gift. I don’t like to talk about my struggle too much, but I think it’s so important to recognize that this can be overcome. Lyme is not who I am but the truth is that it has helped me shape who I am. The truth is that these experiences, as difficult as they’ve been, have helped me to become a better person, a stronger person.
My experience has taught me to self-advocate and to encourage others to advocate for themselves.
I wanted to share my experience with you because I know how vital support and encouragement is when you are going through something traumatic. It’s so important to feel heard and validated; I believe it’s a part of the process to heal.
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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. Katie Golem is a Lyme warrior who wanted to share her experiences with GLA and our community.