Why I Post So Much About My Husband's Lyme Disease

There is a lot in our home that falls in May – my husband’s birthday, a couple of my closest friends’ birthdays, our anniversary and now an event that will forever be added to our list – Lyme Disease Awareness Month. If you follow my blog or Facebook it would be hard to not notice that the majority of posts these days on either site are about Lyme disease itself or about my husband’s current battle with the brutal beast. My husband is the one who is sick, but it would be an untrue and irrational thing to say that this is just his fight. But before I get to that let me make a couple things clear for the readers at home:

My husband is a private person. My husband loathes attention. My husband is the strongest man I know, who rarely complains. Lyme disease has altered these facts for the time being, as presently he is going through the fight of his life. It has made him want to be a change-maker, it’s made him want to get the word out there about how debilitating a disease this is, how those with Lyme are abandoned by insurance companies and the majority of doctors…and as a man of few words, he has given his outgoing, open-book, ridiculous wife the permission to do just that while he is unable or too ill to do so.

What comes to mind when I talk about a person struggling with Lyme disease? Before all this, I doubt I could have even come up with an image while really only remembering vaguely it could come from a tick. (Though now research shows it is any vector-borne insect– some mosquitoes now show the same bacteria in Lyme disease called Borrelia burgdorferi prevalent. Basically any insect that is able to transmit blood from an animal to animal, human to human or animal to human.)

I post on my blog and Facebook about Lyme disease for awareness, not pity, because it is a vastly misdiagnosed, uninsured, under-treated and brutal disease that I witness every single day of my life and will most likely see for the next two years while we are in treatment.

This is a man who currently takes 32 pills a day that every week I have to arrange for him. A man who, on most nights, goes to sleep around 6:00 – 7:00 p.m. A man who has trouble walking at times and feeling off-balance, who gets overwhelmed by reading a book to his children because his head is so foggy most days. This is a man who is currently in bed resting as I type. This is a man whom I will love forever through sickness and in health, who I will stand by – a man who I know will come out of this fight a stronger human being. He is a warrior. I have no idea the level of his pain but just by watching I can see what this disease has done to him for the time being.

Our weekends are spent resting: wake up, take pills, eat, take more pills, sleep for three or four hours only to repeat the same process. As a dad, spouse and of course a man, my husband loathes the facts that his body is at war with itself and he is unable to contribute to our family as he would like to currently. I try to remind him resting is a part of his recovery plan.
Again, I do not share to dramatize this disease but to instead represent it as what it actually looks like – because as I once did not, most people don’t understand what this disease can do to a person physically, emotionally and financially ($3200 so far for eight weeks of treatment). We are determined to make it out of this. We are determined to make a change so hopefully in years to come those who acquire Lyme disease don’t have to go through this brutal, costly, rabbit hole of a process.

Shania Twain, Kelly Osbourne, Kris Kristofferson, Alec Baldwin, Avril Lavigne, Yolanda Hadid and Jimmy Walker (PGA Golfer) have all made their battle with Lyme disease public within the last 12 months. The majority of them spoke of it being “the fight of their life” and they thought they “were dying.” Some of them went to Germany for skin cell transplants – an option for the vastly wealthy celebrities out there, not you and I. The standard of care has to change. Dr K. Liegner said it best…

“In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”

In honor of the upcoming Lyme Disease Awareness Month the hubby and I both will be participating in the #BiteOutOfLymeChallange which is similar to the ALS Ice Bucket Challenge in that, after you take an actual bite out of a lime, you post it to social media, tag three friends, write a fact about Lyme disease and go to www.lymediseasechallenge.org, donate $10 and pass the chain on. If someone doesn’t want to take a bite of the lime, similar to the ice bucket challenge they go on and pledge $100.

I hope my posts bring awareness and action and remind families of what they can do to protect themselves. One bite can change your life.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Jacob Ammentorp Lund.