3 Things Lyme Disease Has Taught Me to Be Grateful For


It was the best of times, it was the worst of times. It was the year of hope, it was the year of despair. It was the day of thinking I will live. It was the day of thinking I might die. It was the hour I was a regular productive human being in society, it was the hour of pain in disappointing my family or friends yet again. It’s the vicious circle that goes round and round and is often called chronic Lyme disease.

So, if the uncertainty of this illness doesn’t get to you, the lack of understanding by family, friends and the medical community just might. I must admit, I have been holding onto much anger about this since the inception of my illness 15 years ago. This year I realized something different. Out of this uncertainty will come a certain type of clarity, forgiveness and even gratitude.

There is clarity in realizing that those close to you will disappoint you in what they say and do. Their hurtful words come from lack of knowledge about the illness, not lack of empathy. And in that vein, here are three things I am particularly grateful for this Thanksgiving.

My WhatsApp peeps. Finding a group of friends that understands has been extremely helpful. We bounce medical ideas off each other and share our deepest thoughts. Moments that nobody else would ever understand or get. I find great comfort in knowing these women, as oftentimes I have to look and seem completely normal (like absolutely nothing is wrong) to practically everyone else in my life. Let’s be honest, healthy people just don’t get it.

My husband chairing the Global Lyme Alliance Gala. My husband said to me, why don’t you get rid of all that stuff (IE supplements, countless prescriptions, Lyme gear… if you have Lyme you know what I am talking about!) and then maybe you would be better! Just an example of the less than ideal thing to say to someone with a chronic illness. However, I realize now that it does not mean he doesn’t care. He went on to spend countless hours making the Gala an amazing night, which meant more than the world to me.

man and woman at the global lyme alliance gala in new york

Just a moment. My youngest daughter and I have had some not-so-great moments before she went off to college this past September. Graduating from high school is so exciting, but can be quite stressful with the added “Lyme layer.” We finally were sitting down to dinner after a long day of moving her into her new dorm. We sat close together at the restaurant, and under the table she put her hand on my knee. And not just for a few seconds, but it must have been for about four or five minutes.

There were no words, but we didn’t need any. I took the moment to mean that I understand and I love you despite all the pain. And in that moment everything just felt right. I almost cried. Sometimes when you feel like you have done a million things wrong, it’s the one moment you did something right that you hold onto. And I will hold onto that moment.

So the very thing that has taken me down time and time again has also lifted me up. Way up. As brutal as this disease actually is, it has brought real meaning in my life. A chance to make a difference, to matter, to count. So if you asked me if I would do it again, I would have to say yes. I have been honored to meet the greatest people and hear their stories. I have learned more about myself than I could have ever imagined. And I will choose not to be angry, but grateful and thankful this Thanksgiving for those few special moments and people I was truly blessed to meet this year.

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