This book has been generating a lot of buzz over the past few months (at least in the Lyme community). Ally (Tommy Hilfiger’s daughter) contracted Lyme from a very young age, and unknowingly struggled with it for many years before receiving an accurate diagnosis. Her father even had her committed to a mental institution at one point because he thought she was having a psychotic breakdown, and didn’t know what else to do. Luckily for her, the people she met through this experience were the ones who led her to her diagnosis. She then began a ten year journey of trying to heal from it – experiencing remission and then relapses, over and over again. The story is inspiring, and I would imagine awfully eye-opening to people who don’t know much about Lyme. I found quite a few passages that rang true to me, and copied them here.
“With Lyme, there is no real, certain cure.” I remember receiving my diagnosis and feeling equal amounts relief and dread. Relief that I knew what I was dealing with finally, and dread that there wasn’t a clear path forward. The more that I learn, the more I believe that I will be 100% healthy again someday, but it will be a long journey.
I also think it’s really important to realize how widespread Lyme is, today. I’m not writing this blog only for people with Lyme. I’m writing it for all of my friends and loved ones, in hope that people will start to pay attention and can hopefully protect themselves from this disease.
“The infection then can be responsible for symptoms either through direct infection or by pushing the immune system into a kind of overdrive that creates an autoimmune…state.” This is something I had to find out a while after my diagnosis as well. Most experts don’t believe you can ever fully eradicate Lyme, but you can boost your immune system enough to keep it in submission for a long time. In fact, a lot of people I’ve talked to believe that they’ve had Lyme since they were born, or a very long time, but symptoms didn’t appear until their immune systems were compromised at some point. This is why the disease is basically too complicated to take out with a single medication or herb – you really need your whole body to be working well to be able to keep it in check.
“Throughout my illness, and for months at a time, I lived and acted like a normal, healthy girl.” Preach, Ally. The thing with this disease is, one day you’re up, the next day you’re down. People have a hard time rationalizing that. I personally have a really hard time when I can do something one day, and the next day I’m just too tired or feeling sick. I look the same on the outside, so people don’t understand (and sometimes I don’t either) that I need help with what came easy yesterday. I find myself blaming people around me for not stepping in when I wasn’t feeling good, but oftentimes they just don’t know and can’t tell. I get so sick of verbalizing “I don’t feel good” all the time, that I just stop saying it, unless it’s a dire situation (or I just want to get out of doing the dishes 😉).
“It is a full-time job to stay healthy.” I’ve been reading a lot about Self-Blame when recovering from Lyme disease (or dealing with any chronic illness). Every day you are getting advice from people on what to eat, do and even think. Avoid gluten or you’re creating inflammation! Relax or your immune system will be too stressed! Stay positive or you won’t get better! We take these messages to heart and do our best to follow them, because we don’t know what else to do to get better. I do think that most of it helps in some way, but it’s a lot. I And when you fail and feel like s***, it’s hard not to blame yourself, because YOU KNEW what you were supposed to do. I remind myself a lot that this is a marathon, not a sprint, and I’m not just treating a disease, I’m changing my lifestyle. Since it’s my lifestyle, I have to live in it, so I have to be comfortable in it. If I’m really in the mood for a glass of wine and I haven’t had one in a couple weeks, I will have one and enjoy it. I have to enjoy my life while healing from this disease. This ties in well to the next passage…
“As I battled Lyme, I was becoming who I truly was, and that was the biggest step I took in defeating my illness.” This disease has made me stronger in so many ways, and has also given me the time to get to know myself better. It sounds cliche but before I got sick, I was rushing around all the time, out with friends 5/7 nights of the week. I was busy, busy, busy, and it was fun, but I didn’t really accomplish much of real value spending all of that time out and about. Since I’ve been sick, energy levels have plummeted and my restricted diet and elaborate medication schedule have made it hard for me to be out of the house for too long at a time. My deepening Lyme-related anxiety has made me less and less excited about socializing and meeting new people, and I prefer to stay in with Erik or a few close friends. As a result, I’ve spent a lot of time by myself. I’ve done more writing in the past six months than I’ve done in a long time, made great strides in my Swedish, read a ton, kept updated on podcasts, gotten into a regular yoga practice, and just enjoyed quiet time with myself. That part of it has been really great, and something I hope to keep up even when I am well again. This, like many other challenges I will face in my life, is ultimately making me a stronger person, and the person I need to be.
Overall, the book was a good, quick read, and a good first step for people who want to know more about what it feels like to have Lyme Disease. If you’re looking for tips on how to treat Lyme though, you won’t really find them – she doesn’t go into a lot of specifics. Thanks Ally, for sharing your story!