11 Lessons I've Learned From the School of Lyme Disease

Can I get a degree in the survival of Lyme disease? Having suffered from neurological Lyme disease for nearly a decade and finally starting to come through to see the other side of illness, I feel like I should have some sort of diploma marking my accomplishment. After all, I spent far fewer years and less heartache getting a socially recognized master’s degree from an accredited university. It seems fitting to have something formal to hang on my wall to account for and justify the trials of the last third of my life.

I would even settle for a certificate of completion rather than a full-fledged graduate degree. I have pondered asking my Lyme literate medical doctor (LLMD) for one, but I just don’t think that would work. He has many fine qualities, but I find it profoundly irritating to have a doctor who has a steadfastly obnoxious level of patience with the ups and downs of Lyme. The only “patient” that describes me is a noun and not an adjective. And while my LLMD is a very knowledgeable physician, entertaining my off the wall sense of humor just isn’t one of his strong suits. So, I will have to take my new found health for what it is and leave the framing and wall space for pictures of my fur children instead.

In this long and trying journey I have learned a great deal about myself, my loved ones and my health. Here is a list of the top 11 lessons I have learned. It may not amount to a degree, but I hope other Lymies find my tips helpful.

1. It Takes a Village

Bring a loved one to your doctors’ appointments. Better yet, bring a team. I never went alone. For several important appointments I had some combination of my mom, dad and husband there for me. It is crucial when you are sick to have advocates in an often treacherous medical system. Also, it is helpful having someone there to help remember questions to ask and translate through your brain fog during and after appointments. Not to mention having loved ones there provides invaluable emotional support in an otherwise lonely experience.

2. Advocate for yourself.

It is truly disappointing when you realize just how easy it is to become a small clog in the colossal machine known as our medical system. Doctors are under increasing pressure to see more and more patients in less and less time, making us vulnerable to improper diagnostics and lack luster care. So, educate yourself! As much as your illness will allow, read books and articles. Join an online support group. Listen to podcasts. Take responsibility for your own healing.

3. Grief plays a huge role.

It seems like there is an endless amount and variety of things to grieve in this process. Including the loss of ability as our bodies decline, loss of friendships and connection to others as we are isolated, financial loss as our careers are put on hold and as we have to cover medical bills.

Then there is the grief for the things we never had because staying alive took priority, like family planning and experiences we miss out on because we were to ill to enjoy them. This is in no way an exhaustive list and how could it be, when grief is so personal to the individual experiencing it. It is important to recognize that we are grieving, and it is healthy and normal to acknowledge that grief is a part of any illness.

4. Your circle of friends will inevitably change.

The fact of the matter is with Lyme disease, “You don’t get it, until you get it.” It is unfair to expect that our
healthy friends will understand. Many will gradually drift and gracefully move on, while others may conduct destructive interventions, thus simplifying the decision to have them depart from your friend circle.

As crushing as the friend situation can be, one of the most beautiful and redemptive things you can experience is the love of peripheral friends moving into your close circle. How delightful it is to be sought out by acquaintances who heard you were sick and made the effort to understand and show they care.

5. You may have to get creative in planning dates.

The life-altering fatigue of illness makes everything harder. Going out to eat, seeing a show or attending a party, you know, “normal” date stuff can feel like the closest thing to impossible. Learn to adapt. Netflix dates are perfectly acceptable and a practical go-to. However, there are other things that can enhance an evening-in with your partner. Get creative – take a bath together, do massages, write letters to each other and try new recipes.

6. You will be told you look good when you feel like death.

Just embrace it! It is human nature to dissipate the awkwardness of not being sure what to say by trying to be encouraging. Choose to not view those comments as denying your reality, but an attempt to make you feel better.

7. You will learn spectacularly useless skills for healthy people.

…And practical daily skills for sick people. Most healthy people don’t need to become an expert in getting blood work done. But when getting stuck is something you do all the time, you learn that it is easier when you are warm and hydrated before blood draws.

Swallowing a meal’s worth of pills is also an acquired skill of the chronically ill, as well as the more specialized treatment skills like managing a PICC line or port. Controlling your gag reflexes until you are in an appropriate location to release that particular herxing reaction and other delightful skills develop along this journey.

8. You will learn to be a master at prioritizing.

When your body is busy fighting spirochetes (and sometimes itself – thanks to the autoimmune aspects of Lyme) energy is a limited resource. Guarding your energy becomes paramount. When you are asked to do something, it quickly becomes second nature to calculate how much that will cost your weekly energy supply.

When I was in a flare-up, I found myself thinking things like, “No, I can’t meet up for coffee. That day is booked, I have to take a shower.” And even if I didn’t have to shower that day, how will I have the energy and focus to drive myself the 10 minutes it will take to get to the coffee shop? All of this calculating can seem ridiculous, but if the consequence of not properly budgeting your energy is spending the next few days in bed, it becomes less ridiculous and more of a crucial reality.

9. What works for one will not necessarily work for another.

We are all unique. Our bodies respond differently. The key is to recognize this and learn to adapt to the body you have been given. When I first got diagnosed with Lyme, I went on a “Lyme diet.” I purchased and read a book on it. I learned new recipes. I bought and ate foods I didn’t know existed. I cut out dairy, gluten and sugar – thus eliminating beloved chocolate from my diet. With all of my effort and sacrifice I expected to not only be free of inflammation and abounding with energy, but I expected to be super model skinny.

My body had no such reward for my toil and depravation. Not only did the diet have virtually no impact on my inflammation or give me an iota of energy, but I gained weight. After four or five months of this crusade, I threw out the diet and rebelliously embraced an Italian diet of bread and pasta and of course chocolate. Not only did this defiant diet calm my stomach (bread just does that for me), I also lost the weight again. Go figure! So, do what works for you.

10. It is astounding how meaningful the little things become.

Before my health battle, I could never have imagined I would be cheering for the completion of activities like taking the dogs to the park, or showering and drying my hair without a nap in-between, or going to a museum without needing a wheelchair! These were all personal victories for me at various points in my journey. I realized how much I took for granted when I was healthy. Now I make a point to be thankful for the little things. How enriching the daily practice of gratitude can be!

11. Perseverance.

There are so many ups and downs with chronic illness. Just getting a proper diagnosis can be a test of intestinal fortitude as many of us see dozens of physicians, undergo countless tests and lots of needle sticks before we discover what we have. After my near decade of struggling with Lyme you would think I would be a docile, soft spoken, patient patient. You might assume that after so long, these qualities would not only be attained, but refined and polished. But quite the opposite happened for me. Instead of learning patience, I learned to fight.

My fight with Lyme has developed in me a new-found depth of perseverance that has been molded through the pain, heartache and tears of fighting for my health. Learning to not give up, continuing to ask questions, advocating for myself, having the courage to switch physicians – again – and continuing to hold to the fragile hope of remission, has instilled in me a strength I didn’t know I had.

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