10 Life Lessons I Learned Caring for My Son with Chronic Lyme

If you had told me twelve weeks ago that my son would return to college in January to sunny South Carolina I would have smiled politely at you, with a sigh underneath that smile, and thought “well, you don’t know Chronic Lyme Disease”. After all, he had medically withdrawn from his first semester of college, unable to walk to class or put on his own socks. But my parents taught me manners and I would graciously thank you for your kind words and prayers you oftentimes offered and send another one up myself. It was a daily prayer, “Please God make my son better.”

My 18-year-old son was diagnosed with Lyme Disease on Valentine’s Day 2018. Not exactly the diagnosis for the day of eternal love. Like many of you, I was naïve and thought the standard course of six weeks of doxycycline would do the trick. But his test showed he had Lyme for a while, which was the key to the year of struggle. Some people get the gift of a bull’s eye (erythema migrans) rash. Some people get better after antibiotics. The unlucky ones get debilitated and fall into the lonely labyrinth of agony with Chronic Lyme spinning the body into pain and symptoms that are rarely the same for everyone.

What I soon learned was Western medicine had little answers for us and pointed us down several medical silos – rheumatoid arthritis, infectious disease, blood tests, adrenal tests, food tests, saliva tests. According to the CDC over 300,000 people in the United States suffer from Lyme disease each year, but what no one tells you is you are on your own if you get Chronic Lyme. Despite having amazing health insurance through my company, alternative and holistic approaches were the only paths that provided progress. After 10 months of navigating the disease, I calculated paying over $20,000 out of pocket for medical services. This is a low number for those with Chronic Lyme and I know from others that our investments towards our son’s health will continue for years to come.

Throughout this long, confusing, frustrating and stressful road, I learned so much being a caretaker to my son. My wonderful company, Microsoft, was incredibly supportive to my caretaking needs. Their understanding made what seemed impossible, curing my son, seem possible. I will forever be grateful for their support. The lessons I learned came from so many unexpected, beautiful places. 

Here are the 10 Life Lessons I learned:

1.      Balance Matters – there is a direct connection between mind, body and soul and when you are ill like one is with Chronic Lyme all three need to be addressed and cured. My son estimates that Lyme had been festering and multiplying in his body for over a year before diagnosis. That means over two years in constant pain. Once he finally got to the point of feeling better, his mind tried to trick him back into the “pain zone”. I understood this being a sufferer of vertigo. With vertigo and balance your eyes, ears and feet need to be communicating. Otherwise you will fall, like I did. The same applies here. If your mind, body and soul are not communicating or misaligned you will fall.

2.      Kindness and Empathy Matter – in the long and winding road to find the right protocol to work for my son I saw many practitioners in many different fields and specialties. What I was shocked by was the wide variety of bedside manners. If you met me with my son for the first time it would not take someone with a PhD to realize that I was distraught, worried, scared and trying to hold it all together. Empathy, it seems, is not a requirement to practice medicine. What is frustrating about Chronic Lyme is many Western doctors don’t even believe it exists, and the Infectious Diseases Society of America (IDSA) tells them it doesn’t. Therefore, in my harried “Mother Bear” state I had some doctors judge us for being wrong about my son’s condition, some claiming he may never have had Lyme. Many Chronic Lyme patients report that same experience. But rather than focus on those who didn’t have empathy or believe in Chronic Lyme, I cherished those who did. We simply moved on from those lacking emotional intelligence. Empathy is the highest form of emotional intelligence and chronically ill patients survive on this. Exercise your empathy whenever you can and share it with great abandon. It really does make a difference.

3.      Telling Your Story Helps Everyone – when I was pregnant with my firstborn, I learned this lesson quickly. My doctor, who was male, would tell me what to “expect when expecting” as if his clinical training without actual experience of giving birth was enough. Of course, It was the actual mothers who had been through the major ordeal of childbirth that shared the most detailed and helpful knowledge. Likewise, every person that had been through this horrible Lyme journey helped us. Every single one. While hearing each story I listened and took notes, scribbling down each nugget of information and comparing to others, as every individual responds differently to Lyme and the treatments. If we heard something working for someone more than twice, we tried it. Those who go before you have so much knowledge to share. Take the time to ask others about their story – even if they are a perfect stranger. You will learn so much in the process.

4.      Listen, Believe and Communicate – the key to caregiving lies in this lesson and to be honest it is the hardest to do when it is not your own body. Every day I asked my son how he was feeling and thankfully he took the time to communicate this. Not everyone does or knows how to communicate the strange pain and symptoms he is feeling with an illness. Sometimes he would explain things that sounded crazy, like asking me to massage the crook of his jaw because it was in so much pain or sharing he could not lift his arms to feed himself when on the outside he looked fine. Listening is one thing, but believing is key. In her book about her struggle with Chronic Lyme Yolanda Hadid, famous from The Real Housewives of Beverly Hills, titled her book Believe Me: My Battle with the Invisible Disability of Chronic Lyme because no one did believe her. You know what you are feeling in your body. Having someone believe you and advocate on your behalf can be the keystone of your recovery both physically and mentally.

5.      Prayers Work – I am a Sunday churchgoer and volunteered for years as a youth leader but have always quietly harbored my religious doubts. But nothing solidified my faith more than the overabundance of prayers we received for my son during this past year where we publicly shared his struggle with Lyme. From friends, family, acquaintances and perfect strangers on Facebook, every single prayer offering mattered and I told my son about every single one. The most compelling, however, was from a contractor named Carlos that happened to be working at our house the day our son came home after medically withdrawing from college on November 6th. Carlos had heard me talking about my son’s illness and the day before his return I shared with tears streaming down my face that my son had to come home. Carlos, who I found out a week before is a minister here from Guatemala, had on several occasions asked to hug me or pray with me and every time I said yes. When he met my son he immediately laid his hands on him and prayed, loudly and passionately, sometimes in Spanish and it was absolutely beautiful. Another day he gathered all of us together in the kitchen for a prayer session – with all of us laying our hands on my son – mom, dad, sister, Carlos - and we closed our eyes as Carlos prayed.  That day my son said he literally felt injected with the Holy Spirit. Prayer works.

6.      It Takes a Village – I have so many people to thank for helping us through this past year and they fall into two categories: those who have been through Chronic Lyme (who I compassionately refer to as my “Lyme Heroes”) and the family and friends who supported all the aspects and logistics of my son’s care. Three distinct Lyme Heroes who had been through horrible roads to recovery helped us almost daily to navigate strange symptoms, desperate feelings and provided directional advice and valuable information and tips. Each one of them was truly invested in my son’s recovery and their support was critical. I have found this community of folks recovering from Chronic Lyme to be incredibly supportive – more than I could have ever imagined. I think a lot of it has to do with the fact that the Lyme community suffers alone many times navigating this lonely journey. Very few people know about the chronic form of Lyme disease and unlike other well known, researched and supported diseases, Chronic Lyme feels like the ugly stepchild disease of chronic suffering. The Lyme community more than makes up for this, literally enveloping us in love and support to get through. The second group encompassing friends and family played another critical role. When I needed an appointment as soon as possible for a specialist, a quick text to my husband would do the trick. Thirty minutes later he had completed the research, contacted the doctor and scheduled the time. Another example of support was people who drove my son to appointments. Due to his overall body pain the act of driving and pushing a gas pedal was too excruciating, so every appointment my husband or I had to drive him both ways all while juggling work obligations and another child.. When you have at minimum two appointments a day in opposite directions this can be a lot. Having a stand in driver made all the difference. The key here is you cannot navigate and attack your care plan alone and as a caretaker, wife, mom and employee I could not sustain the intensity of all that is needed alone. Ask for help and be specific on your needs. People are standing by to help they just don’t know how.

7.      Attitude Makes All the Difference – when I dropped my son at the airport last week to fly back to college, I handed him a handwritten note to read on the plane. In that note I shared with him how proud I was of him for so many reasons. One of the biggest ones was his attitude during this whole year. Not once did he say, “why me?” although I know in my private moments and prayers I did. He tackled this disease with the determination and competitive nature of an elite athlete, never letting failure or set backs get him down, waking up every day insisting on a schedule that persistently and daily did as many things as possible to get better. When the homeopath gave him an herbal cocktail of 6 different herbal blends, he downed that glass without complaint. When a Lyme specialist told him that he had to go on a restrictive diet with no gluten, sugar, eggs or dairy he cut them out cold turkey never looking back. When a friend offered to lend us an infrared sauna we jumped at the chance and he sat in it every single day. Whatever it takes. The only time he ever got frustrated with me was when I didn’t truly grasp a pain or symptom he was feeling, but he always took a deep breath and explained it again until I was clear. As an 18-year-old this attitude is remarkable, and I know for sure this helped him tremendously in his recovery and will serve him very well as he defines his “new normal” moving forward.

8.      When You See or Feel Something, Say Something – many scared parents have approached me over this year and asked “How did you know he had Lyme? Didn’t he have a bull’s eye rash?” Honestly, it is hard for them to hear we never saw a sign. It is hard to share how long it took to put mysterious pieces together to determine when he got infected. In my son’s case I attribute the discovery of his Lyme disease to his physical therapists. While treating him for weeks for his shoulder, they were astute enough to pull me aside to share their concern that my son came in for each session and complained about pain in a different area other than his shoulder. This migratory pain and him revealing to me when asked that all his joints hurt is what helped us diagnosis him. Without that the Lyme bacteria would have continued to fester and multiply. If you see or feel something say something to your doctor, and if you know in your gut you have Lyme but your doctor doesn’t believe you or your test comes back negative get a second opinion fast. The 13 most common Lyme symptoms are: fevers, headaches and dizziness, sensitivity to light, degeneration in cognition, fatigue, joint aches, rashes, facial palsy, heart palpitations, inflammation of the brain and spinal cord, problems with short term memory, numbness or tingling, night sweats, and regression. In addition, based on my research and other Lyme patients input, I would add migrating pain, symptoms that seem to come and go, and particularly a “summer flu”. Get to know them inside and out and be attuned to your body. You would be amazed at how many people have self-diagnosed this way.

9.      Failure & No are a Gift – I saw so many doctors in the last year trying to get answers for my son’s condition and at times we felt like we were drowning in the unknown grasping for answers like a life preserver. As he navigated through the roller coaster of his pains and symptoms, I would quickly make an appointment with a new specialist that focused on that system or area of the body. When the urologist and gastrointestinal doctors each told me there was nothing wrong my son’s response was “this is good news – now we know it is not that”. No can be a gift. Too many “yes you have a problem with X” can really be hard to navigate and the “NOs” gave us a clearer path to building the picture of the protocol that would work for him. Likewise, with treatments that others recommended, if they did not work for my son we moved on. He started to feel like he was running on a gerbil wheel of different treatments and the failure of something not working was often a relief. Check that one off the list and move on.

10.  Never be afraid to try new approaches – when my son medically withdrew from his fall semester, he had been on three antibiotics and 12 supplements. Immediately upon his arrival home he declared no more antibiotics. The side effects of five months on antibiotics were awful, and he could not continue to endure them. I had never ventured further than acupuncture when it came to alternative or Eastern medicine but that day, we embarked on the journey together. We learned about so many great treatments and tried them all. And in that journey, we got a bonus. Each practitioner not only focused holistically on his body but also his mind and soul. If we had just stuck with the Western medicine protocol, he would have healed the Lyme in his physical body, but the healing of the mind and soul may have taken a back seat. This holistic approach was key for my son to fight and heal from this traumatic disease.

I am thankful to have gone through this journey with my son, and we are so much closer having gone through this together. He is now on my list of Lyme Heroes. I will forever be in awe of his determination and drive and know it will serve him well and will continue to shape the man he will become. Now I will work to pay it forward to the Lyme community, helping to serve and share my story in the hopes of helping someone else this day or in the future.