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How I Changed My Mindset About the Isolating Nature of Chronic Illness

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Like many others in the chronic Lyme disease community, I’d found myself living a very isolated and lonely existence these past 15 years since my diagnosis. So it may be surprising to learn that I finally found freedom, self love and one big piece of my own healing when I decided to fully embrace solitude in my life instead of fighting it. Yes, I prescribed myself a steady diet of cutting out toxic people and enjoying my own company.  This may sound small, or even “uh-duh,”  but trust me, this is no small thing when one is already dealing with the life that comes with serious illness and when one has so few people left.

Lyme, like many types of chronic illness, is quite misunderstood. The awareness of its existence is improving, but sadly the details of how it effects people and of how truly debilitating, even potentially deadly, is still quite misunderstood.

You are often labeled as “doing it for attention” or just being lazy, a leech on our fine society. And because you don’t look sick, people don’t often care to dig any deeper then the surface, to see the bad days you don’t come out for, or the mess and pain happening underneath the “normal-looking” exterior. Once you fall ill with a chronic illness people in large part fall away from your life, so quickly in fact it’s like they were never even there. You become the ghost of your own existence.

Why? Because they have their own stuff and a chronic illness is well… long. It’s not always a barrel of laughs. In fact sometimes it is hard, emotional or even a bit boring.  So it’s much easier for them to continue in the world of not knowing much about it, believing it’s not all that bad or you must be faking it. Or they believe your just not trying hard enough to get well, or even that you somehow must have done something to deserve it — because that’s how karma works, right?

Because believing these ridiculous ideas absolves them from any responsibility in having to be there for you. Then they can still feel like a good person, while you lie alone on your couch or go to the ER by yourself dealing with the dark truth they don’t want to see.

This was certainly my experience with having Lyme disease. Most people in my life dropped away. They stopped inviting me to things. True, I was usually too sick to do much, but it would have been nice to be remembered. And they certainly never came out to me. Not to help me make a meal when I couldn’t get out of bed for three years, and not even what I truly wanted the most, which was have someone to come over, sit on the couch and just watch a movie with me. To help break the isolation and help me feel human, just for  few hours.  No, not even that.

I did still have some people in my life. But so often the people we are left with are only the unhealthy ones, the toxic relationships. Many people in the chronic illness groups I know come from abusive families and I am not the exception. Due to my health and ensuing financial difficulties I was stuck having these people in my life far more then I would have liked. Stuck staying in toxic living situations. And often keeping friendships with people who it didn’t feel good to be around, because I was so very lonely and in need.

There many studies showing how healing it is to have good friendships, good families. And similar studies showing how loneliness and isolation not only hinder someones healing, but can cut down their life expectancy. This is a hard truth.

In a perfect world, we all have family and friends who continued to love us through our illness, no matter how long it was or how misunderstood. Friends who made an effort to educate themselves and learned how to bend a little in their social interactions to be able to fit us into their lives. True, sick people can’t go out and get drunk on a Friday night, or go wild on the dance floor. I can’t even eat out, at literally any restaurant.

But I am a great friend and worthy of a great friend. I am loyal, honest, a great talker and an even better listener. And because of all the things I can’t do, I have other strengths I bring to the table. I can help you get in touch with nature, to learn to appreciate the smallest moments of beauty. I will build you up and help you grow in compassion. I love movies and books and a good dirty joke with the rest of them. And maybe most importantly, I will send you all the best Baby Yoda Memes. That’s a pretty good catch I think.

I love myself and I know I deserve a good friend. And I have tried and tried over the years to find one. And its not like I’ve never met someone who I’ve hit it off with and who wouldn’t have been toxic or a dropper. But it was rare and always invariably they lived too far, or ended up moving or just had a much busier life then me. And yes, so often the illness and my limitations did get in the way, even with generally good people. Over time, tired of trying and losing, I became bitter and desperate. I became angry at the world, lonely and just hated people in general.

When I went out anywhere it was almost always by myself and miserable. I was shy and I wanted company. I was always hyper-aware that nearly everywhere out and about people are their with a friend or partner, or at the least they were walking their dog. And I always imagined they looked at me wondering why this women was out by herself like a loser.

But then my perspective changed. I had read a book that assigned “Artist Dates,” which was literally doing everything I was already doing — going to the parks, beaches and museums by myself. But doing it on purpose, with positive intention. Not because you had no other option, but because you wanted to. You were getting to know yourself. You were going to be alone with the nature or art and to feed your creative soul. And going with that new intention I suddenly felt empowered; I felt joy.

Sure from time to time I still occasionally wish I had someone with me, but I quickly brush that off and embrace it. There’s a freedom to being on your own; you can linger wherever you want, do whatever you want for however long you want and go at your own pace as your health and spirit dictates. You can’t do this with other people. You can connect with nature and art in the quiet spaces that would normally be filled with chatter or attitudes.

These “self dates” and my other mindfulness practices changed so much for me. Now when I went out with people who were no good, I wished instead I had just gone alone. And I quickly embraced that lifestyle. I have in large part cut out almost all the toxic people in my life. And I am continuing to do so — it is now a sacred health practice for me. Though I am still lonely on occasion, I can say I am so much happier and so much healthier.

It’s still a journey, but one I am hopeful in again. I am no longer alone. No longer the bitter, lonely, sick girl with Lyme. I am in a sacred practice of solitude. I am with myself. And I truly do love myself now. My mind and spirit have healed and so a big key to my physical healing has been revealed. I feel hope again.

And I truly believe as long as I continue to say “no, I would rather be alone than accept an unhealthy friend, family member or partner” that I will continue to grow. And yes, even hope that as the future comes I will begin to meet those people who will value me and love me as I deserve, pesky ole’ health issues and all.

Photo via contributor

Originally published: February 12, 2020
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