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To Those Who Don't Know What to Say When I Open Up About My Lyme Disease

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“Oh, I know somebody with/who had Lyme disease, I’ll give you their phone number and you can talk to them!”

That sentence right there is quickly becoming my least favorite combination of words that I hear probably weekly. I know it’s your way of trying to relate to me or maybe even trying to comfort me, but it really doesn’t help. In fact, it does the opposite most days. It makes me feel even more alone because I just needed you, my friend, to hear and accept me.

I’m terrified of my illness a good portion of the time, and mostly because I know that everyone presents different symptoms and some people recover while others live with chronic Lyme for the rest of their lives – and I’m absolutely terrified that this is going to be the reality I live with for the rest of mine.

Now, I know you probably have no idea what to say when I finally open up and am honest with you about why some days I just can’t find the energy to come hang out with you and why I feel like my life revolves around managing my strict diet and various medications. I want you to know it’s OK. You don’t have to know what to say, you don’t have to pretend in front of me that it’s going to be OK and then walk away worrying about me. Because sometimes I need you to simply give me a hug and not say anything. Sometimes I just need you to tell me that you still accept me for who I am because sometimes my illnesses make me really insecure and I worry you’ll drop me as a friend when I admit to you that I’m sick.

You’ve taught me it’s OK to be open with you about how I’m feeling in relation to depression and anxiety or Hashimoto’s. Please just teach me it’s OK to be open with you about Lyme disease.

Some days I think I’ll never stop crying and some days I’m just angry at all the things going on with my body that I can’t control. Please just love me anyway. If I’m crying it’s OK with me if you come sit with me. Ask people if you can stay with them – you have no idea how much your simple presence means. If I’m angry at what’s going on in my world, you can leave if you don’t want to see it, I won’t blame you – but the best thing you can do is to verbally remind me of why I should keep fighting.

I’m learning not to push my body too hard, and it’s a difficult lesson to learn. I just don’t want to be alone while I do it. I know my chronic illness affects not only me but those who care about me, and believe me – that knowledge doesn’t make it any better because I wish I could protect you from it even more than I wish I could be rid of it. But the knowledge that you’re willing to be there and hold my hand through it gives me a strength I really need right now.

And the days that I’m coping well, don’t bring it up. Let me have that short moment to forget that I’m sick. It’s the best part of my week when I can get up without feeling completely exhausted or move without feeling the achiness in every joint in my body. Just enjoy that moment of victory with me and be my friend.

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Photo via oneinchpunch on Getty Images

Originally published: December 8, 2017
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