Thoughts from a Lyme Patient Pt. 2

The emotional things you go through with a chronic illness can be even harder than the physical symptoms…

The other day I cried for hours. I felt so horrible about myself. I just wanted everything to stop. I almost wanted to curl up in a ball and die. Sometimes I feel like I don’t have any more energy to keep fighting. Like there are so many what-ifs. I can’t think like that, but it’s so hard. I don’t know if I’ll ever get better. Why fight if I’m going to be sick for life or die anyway?

I remember watching a video and a man said he thinks Lyme disease is worse than prison. In prison, you have a time of when you will get out. You know, okay I’ll be here for three years or if it will be a lifelong sentence. I honestly think it would be better if someone could say to me, you have however many years to live. I could have some kind of understanding of what’s going to happen to me. Right now I have no idea.

The other day I watched RENT with my mom. I love the story and lyrics in that musical. It’s about the AIDS epidemic which is very similar to the Lyme epidemic. If you haven’t watched it you should. My mom and I cried the whole movie. It felt good seeing a story similar to ours. Often we see Cancer on TV or in movies. Most of the time Cancer is a different experience, at least from what I’ve seen.

Last week everyone started school again. It’s so hard for me to watch everyone around me live their lives. I’ve talked about it before, but I think it’s the hardest part for me.

I want to watch my old friends having fun and living life, but it can make me feel so sad. I see their photos on social media and it sucks. Sometimes I think maybe it would be better if I didn’t see it, but then I crave to. It’s such a weird thing.

I’ve lost basically all my friends. Only one has stuck with me, Sara. She has been amazing and so supportive. Everyone else moved on with their lives. I know that they didn’t mean to hurt me or anything, but sometimes it still hurts to think about everything I have lost.

Sometimes I feel like I’ve lost myself. I feel un-human, worthless, and pathetic. I know that isn’t true, but when you can’t do anything, its hard to believe you’re important.

I see everyone around me succeeding at various things. People younger than me, driving, taking the SAT’s, and doing things I thought I would have done years ago.

This year I would have been a senior. I feel like I didn’t get any high school experience. I dropped out the middle of tenth grade and even when I was in school, I still hardly ever went.

Now I am going to get my GED. I’m hoping that will help me feel proud of something.

My parents say I should feel proud of what I’ve gone through, but it’s different to me. Yes I should, and I do, but I want to be proud of something happy. I don’t want to be known as the sick girl. I want to be proud of something I did because I wanted to. Not something that I had to get through.

I want people to smile at me. Not cry and hope I’m not dying.

I realize I’ve also gained a lot of things. I’ve gained experience that a lot of people will probably never have. I’ve gained my best friend, Anais. She’s my massage/physical therapist and I wouldn’t have met her if  I wasn’t in so much pain.

This disease is really hard, but I have to stay strong and hope for better days. I have to focus on the things I am able to do, not the things I can’t. Someday I’ll look back and remember what I’ve gone through. I’ll remember how strong I am.

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  1. Kali,

    I have a 15 year old son who has a very similar experience to you – we are in Germany now. He is just waking up from his first hyperthermia treatment. We also live in Boulder. Email me if you would like to connect. Thanks for your website. So helpful for him to know that others have a similar experience.

    1. Hi! I would love to connect with you and your son. I would like to hear about Germany and how he’s doing. I know it’s a super tough experience, but in my experience it was worth it. It got me a little bit better… Anyways I hope to hear from you! -Kali

  2. I’m sorry you’re feeling so low Kal Gal. I imagine it must be hard seeing your old friends/life and not being able to participate. I’m so proud of you, for so many reasons, but getting your GED is going to be a huge accomplishment.

    Know that you are loved by so many! Looking forward to spending time with you in October!

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