The 'Glimmer of Hope' on the Good Days With Lyme Disease

Today I went to Target with my two little boys. A typical Tuesday activity for the average suburban mom of toddlers. I got some coffee, the kids got new Legos, I grabbed an extra large pack of size five diapers for my 2 year old.

Once the bags were in the back of the mini van, everyone was securely buckled into their respective seats, and the radio was tuned to generic pop music – and I cried. I cried because I suddenly realized that I wasn’t exhausted. I wasn’t in excruciating pain. I wasn’t angry or anxious or yelling because I just couldn’t handle one more ounce of stress. Today was the first time in my three years of being a mom that I had gone to Target with my kids and my illness didn’t interfere. But I also cried for something else.

The thing that people don’t talk much about with chronic illness is that there is comfort in the pain. For every glimmer of “real” life that I am given, an almost instantaneous gloom is cast over me, reminding me of everything that this disease has taken from me.

Every missed or lost friendship, experience, or opportunity. Years of being told I was lazy or stupid or lying. Three years not being the mom I was meant to be, five years not being the wife I wanted to be, and countless years begging for a diagnosis, knowing this isn’t who I really was, all the while being told time and time again that I was “fine.”

With my diagnosis came a name: Chronic Lyme disease. With my diagnosis came a dizzying array of antibiotics, supplements, tinctures, terminology, more doctors, shots, blood draws, snake oils, x-rays, scans, IV’s, diets, herxing, detoxing, flaring, more tests, fighting with insurance, debt, co-infections, therapy, support groups…And, when I was lucky, glimmers of feeling “normal” – like today. With my diagnosis came the validation that I wasn’t lazy or stupid or lying.

I was sick.

But with my diagnosis also came the gut wrenching sadness that I had been robbed of so much of my life simply because of an overlooked illness. All these years a blood test stood between me and the reason why I had so many strange symptoms. A hundred dollar blood test, that no doctor ever mentioned, as I sobbed in their offices pleading for answers, only to be told that it must all “be in my head.” Years of guilt and shame, convincing myself who I must truly be, when I knew it wasn’t true.

One test would have shown the truth, I wasn’t a mean and angry person. I was in pain. I was suffering. Piece by piece the person I truly am was being overtaken by this horrible disease. One test, suggested by a friend, was my last ditch effort before I finally gave in and agreed that this was just who I was. Then the test came back positive for Lyme disease.

So on days like today, I enjoy my coffee at Target, I give my boys an extra long hug because my body can handle it, I talk to my husband because I can actually find the words, and then I cry for the me that Lyme disease stole. I know road ahead is long, but hopefully one day the glimmer will outshine the gloom.

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

Thinkstock Image By: MickeyCZ

Find this story helpful? Share it with someone you care about.

Related to Lyme Disease

illustration of smiling woman surrounded by pink flowers

Learning How to Stay Positive After My Lyme Diagnosis

A year and a half ago, I started feeling off. It began with flu-like symptoms, which I convinced myself was a lingering sinus infection. I made excuses for why I was feeling this way: allergies, working in a school, wedding stress, working too much, having a low immune system. Then, one day in December, my [...]
woman laying on couch

A Letter to the California Department of Public Health About Lyme Disease

I recently went to the California Department of Public Health to make my voice heard on the topic of Lyme disease. I realized quickly that my statement to the committee would be too off topic this year, but I still wanted my voice to me heard. Here is my letter to them: Dear Committee, My [...]
finger pointing to spot on leg with text chronic lyme disease exists and we need a cure

The Message We Need to Spread During Lyme Disease Awareness Month

You see that little spot on my calf? You wouldn’t think that a small bite like this would change someone’s life, turn it upside down, crush their goals and dreams, shake them to their core, causing immense pain and profound fatigue along with a multitude of other symptoms and issues. That bite also caused a [...]
bird's eye view of a woman sitting at a table and typing on her laptop

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 [...]