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Why You Don't Have to Say 'I'm Sorry' When I Talk About My Lyme Disease

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I once sat down with someone who lives chronic Lyme disease, just like I do. Of course, this disease manifests differently in every body it inhabits. Yet, everything seemingly comes back to the same place, and it’s all interconnected somehow. It’s a big subject — the Lyme one. But this particular story isn’t solely about Lyme, but something this person I sat down to speak with kept saying to me: “I’m so sorry.”

Now, along with my chronic Lyme, I’m a chronic apologizer. It’s something that I’ve been realizing more and more lately, something that I’ve been trying to curb and to overcome. Who wants to go through life apologizing every second? “Sorry I was in your way, sir.” “Sorry I was late, dude.” “Sorry, I have to reschedule — not feeling well today.” “Sorry for breathing.” OK, that last one was an exaggeration, but you get the idea!

In general, why do we apologize for existing? For being human (don’t get me wrong, there are instances where a genuine apology is necessary and appropriate, but I’m talking here about apologies like they’re free samples being handed out at Costco). Lena Dunham recently wrote an article on this chronic apologizing subject, and that’s what really sparked my pondering.

After this sit-down conversation with a fellow Lyme warrior, I got to thinking… after every symptom I told this person I had, after every circumstance I shared that I’ve been through, after all the emotional or challenging things I’d mention, this person would say, “I’m so sorry.” I walked away thinking how strange that was. Thinking that this person sitting next to me is fighting the same fight I do, yet I didn’t apologize to this person once (well, I think I may have whispered it once near the end for fear of this person thinking I am not compassionate or empathetic toward other people in this similar situation to mine, but that’s my ridiculous guilt getting in the way… typical (and working on it!). As I started to process our conversation and really start to analyze what I had said and what this person had said, I was so proud of myself. I realized something. I realized that I have accepted my condition. And that moment was so impactful for me — powerful and profound.

Why was I not apologizing? Simply, because I am not sorry. I am not sorry that I was stricken with this disease. No, I do not want to sick; I do not want to miss out on wonderful events, or cancel plans, or move back home from a place I love, or withdraw from school, or quit jobs, or not have the energy to work out or to sing — no. But I am not sorry because I am learning to work alongside my illness, to work with it. I am learning to cherish this body o’ mine, as I know it craves to heal itself. I have to honor my body. I have to honor the lessons all these years of being sick have taught me. I am not sorry for my symptoms or my illness because I accept them. I am taking the time to learn my body in a new light, to figure out what it likes, what it doesn’t like, what environment it most thrives in. This illness has allowed me to begin to learn more about myself than I ever think I could have. And as I mentioned before, that is powerful.

It can be so easy to get caught up in self-pity and self-hate and depression (with yes, suicidal thoughts; not a lot of people know I’ve experienced that in the many years I’ve been sick, and man, I’m at a loss for words to even describe what it feels like) when a person is so sick, and an “I’m sorry,” can sometimes feel like fuel to the fire, as I’ve experienced personally. In the moments of great depression surrounding my illness, the times of intense self-pity and self-hate, “I’m sorry” made me feel validated in my depression and self-pitying (I want to take a moment to say that this is extremely personal to my circumstance and in no way do I wish to demean or discredit anyone who fights depression and all its realities on a daily basis). And what I’ve realized, even as I sit here writing this, is that laughter and a positive hug (without that silently expressive face that some people give you… the I-feel-really-sorry-for-you-but-I-shouldn’t-tell-you-that face) and warm touch can be so uplifting and encouraging to me. It doesn’t erase my depression entirely, but it seems to lift it, like on a foggy day when the sun streams through the clouds for a beautiful breath. Like I said, even if just for a moment. That glimpse of brighter days to come (and yes, they do come, friends!) is everything.

So, what to say instead of, “I’m sorry?” You know what, you don’t have to say anything. How about that hug? Or a squeeze of the hand. Or a touch to the leg. Or even a smile. Bringing light and happiness and tender human touch to a situation that seems so heavy and devastating, transcends. Maybe for a day, maybe for a moment — but even just that moment of happiness and warmth sets a brighter, positive tone. The love reaches deeper than the illness does. The love heals.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.

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Originally published: June 13, 2016
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