The Worst Parts of Life With Lyme Disease

I have been doing a lot of thinking lately…well, as much thinking as my Lyme brain can handle. When the fog isn’t flooding my mind, limiting my ability to process thoughts, I spend my free time pondering.

I’ve been thinking more about the ways chronic Lyme Disease has changed my life. It’s been hard (which is an understatement). My boyfriend, Jonathan, has been a trooper; he’s always willing to listen as I verbally process. As I think through the gradual decline of my health, I notice connections — signs that something was off. I’ve been sick for far longer than I even realized. Now, though, it makes a little more sense.

Here are some of the supplements and medications I take each week. There’s a lot of strategic planning that goes into treating Lyme Disease. Every weekend, I sort through medications and supplements to fill the pill containers that I will use at various times of the day. What I take at what time is determined by what cross reacts and what I’ll be eating. Some medications have to be on an empty stomach, so that also makes the planning tricky. Each week, I plan meals and also take inventory of what medications and supplements need to be refilled. Keeping up with the treatment alone is a full time job!

Something I’ve struggled to put into words, though, is answering, “what is the worst part of this illness?”

Is it the insomnia? The joint and muscle pain that migrates around my body?

How about the brain fog? Or, the stuttering that happens when I start to get too tired at 6 p.m.

Is it the fact that one minute I can feel optimistic and happy about my life only to five minutes later be depressed and see no way out of my current situation?

Is the worst part that I feel crazy and misunderstood? Or, that people can’t see the deep pain that’s going on beneath the surface?

There are many difficult aspects of Lyme Disease and, like my symptoms, what I consider to be the worst part typically changes by the hour.

So, I decided to enlist the help of some fellow Lyme patients to share what they consider to be the worst parts of life with Lyme Disease. We each have a different perspective, but we all have experienced the deep pain of Lyme Disease wreaking havoc on our lives.

What are the worst parts of having Lyme Disease?

“The worst part is being on the outside of your life, looking in. You surrender control to survive, but struggle as you grieve the loss of self… Not to mention the loneliness.” — Meredith Rhoads, 27

“Going for years without a diagnosis because it is not recognized as a chronic disease.” — Denise, 64

“As a parent it is watching my child suffer in so many ways and not knowing how to make it go away…Seeing your child petrified if you move more than a couple feet from her.” — Mother of Breanna, age 5

“First, I unknowingly gave my wife Lyme; the pain and suffering I caused her has been difficult to accept. Second, I’ve been out of work for over a year and have been a burden on my family. Finally, suffering through those two things — along with the Lyme symptoms — has made me worry nearly constantly when and if this will end and life will get better.” — Jeremy Turner, 45

“Doctors and other people making you feel like it’s just in your head! Also the hopeless feeling! It feels like you will never get better!” — Callie Bettenga-Lutgen, 44

“The worst thing about Lyme, and there are many, was the fatigue. A hit a brick wall and cannot do more, type of fatigue. In addition, the joint pain especially upon arising in the morning, the weight gain, brain fog, no stamina, and taking days to regain energy after any exertion. It’s the hard realization that one person could have so many symptoms (25+) all at once.” — Kris, 49

Getting treatment for chronic Lyme Disease often means traveling far for appointments. Jonathan and I have to travel 4 1/2 hours to Minnesota to see my Lyme doctor. She knows her stuff and is totally worth the trip, but it takes a toll on you!

“At my worst, I was unable to read, speak coherently or think. I was no longer me. I was nothing.” — Catherine Miller

“As a parent, the lack of family, friends, clinicians understanding how this illness impacts Grace who is 14. Not knowing when the insurance will stop covering her medications and seeing her frustration and inability to be a ‘normal’ teen. Also, the so called ‘advice’ from those who do not spend time with my daughter.” — Cindy, mother of Grace, age 14

“Hearing others state: ‘you need to get up and do things and stop faking it,’ the pain. I hate it when teachers or others ask what do you plan for your future — getting married, travel, school, etc.” — Grace, 14

“Losing several years with my children [because of] not having the energy to play or keep up with everyday activities.” — Jim, 46

“The unknown: will our treatment work or did we waste the money we needed to keep the roof over our heads?” — Janell

“As a Mom who also has Lyme I will take every day of hell this disease delivers if I could only rescue my children….yes you read that right, children! Lyme has stolen our vitality and we want it back.” — Brooke Boden, 43, mother of Emily, 17, Alissa, 13, and Grayson, 2

Lyme Disease is not a cookie cutter illness. As I hear more stories about how it has affected the lives of others, I realize how unique, yet similar our stories sound. Often, we feel like we’re losing pieces of ourselves to the point where there’s no hope. We don’t know how we’re going to get out the the hole we’re buried in. It’s heartbreaking and devastating. These are just some of the worst parts about having this horrible disease.

If you know someone with chronic Lyme Disease, I urge you to start asking questions to find out more about how difficult life may be. Then, educate others and advocate for those who are suffering. We need you.

Emily Lofgren writes about reconciling faith and life’s current struggles. She was recently diagnosed with Lyme Disease and is passionate about educating others on the effects of chronic illness. Grab your free copy of her eBook Finding Hope Through the Fog. You can read more at her blog. Also find her on Facebook, Twitter, and Instagram.