The unexpected pain of change and loss of friends. 

Before my illness, I had a tight-knit group of friends that I considered my “ride or dies.”

As my illness began to take over my life, I was scared and spiraling into desperation. I was often posting on Facebook about the terrifying illness I was experiencing as a way to express and release some of my anxiety and fear. There was a part of me that wondered if sharing my symptoms would spark someone to see it and reply with “I’ve had that, too! This is what it is, and here’s what to do!”.  

That never happened, but after a year and a half of searching I finally figured out that I was suffering from late-stage Lyme disease. As I began treatment, I also began to lose lifelong friendships in a painful and surprisingly fast way. Losing friends due to chronic illness was unexpected, but happened in what seemed like rapid-fire succession. These are the kinds of things that happened to me over the course of 2 years after my diagnosis.

My own story of losing friends to chronic illness. 

• After sharing my experiences on social media, a friend of over 30 years said to me one day, "All your posts are like, ‘poor me’." It felt like a punch in the gut like she was letting me know that not only was she over my Facebook posts, she was also over me and all my problems.  

• At one point I set up a GoFundMe campaign to help with astronomical medical costs. I was no longer able to work, but even if I could, the medical costs were completely unaffordable.  

While it was a resourceful way to figure out how to pay over $600 a month in necessary medical care, it was really tough for me to swallow that I was publicly asking for money.  

During the campaign, I had asked my friend of over 20 years if she could share it on her social media profiles for some extra exposure. Her response on the phone was, "Maybe you can just get a job now."  
 

• In the second year of my illness, I became homeless from said medical costs. I was living in my truck when it was rear-ended. This left me with only the clothes on my back, my phone, and wallet. My best friend's mom was going out of town, so they offered to let me house-sit and sleep there a few days.  

With a severe concussion, whiplash, and neurological Lyme disease, I took the bus for two hours to meet her for dinner. She ran into a friend while we were there, so instead of her driving me 15 minutes to her mom's after dinner she waved her hand at me and said, "take a Lyft."  That's the last time I saw my best friend of 20 + years. She ignored my texts and calls for 3 days after that.  

 A common thread of abandonment. 

Pretty much everyone I speak to in the Lyme community has similar stories. Chronic illness of any kind has a major impact on relationships of all sorts, and the question people raise is - why? Why are seemingly solid friendships so easily wiped away in the throes of chronic illness?  

I have my own ideas as to why friendships fail while facing chronic illness or crisis: 

 
1. With chronic illness, our needs and boundaries drastically and suddenly change. Most of us expect our relationships to seamlessly change along with them. I think I had expectations of people to show up for me in ways they never had to before. I expected them to do what I imagined I would do if the roles were reversed, but never had that conversation with them.  

So, when they didn't show up for me in the ways I needed, I became resentful. And likewise, when I couldn't show up for them in the ways I always had, they became resentful. 
 
2. People can be extremely uncomfortable and even repelled by vulnerability and need for support because they are terrified of their own vulnerability. My friends didn’t have the skill set to support me because they have never truly faced or embraced their own needs. 

A New York Times article suggests the more vulnerable people feel, the harder it may be to connect...many times people can picture all too vividly the same thing happening to them or their children. They, in fact, feel too much empathy rather than not enough. 

Psychologist Dr. Jackson Rainer, Ph.D., ABPP describes this kind of distancing as “stiff-arming” — creating as much space as possible from the possibility of trauma. It’s magical thinking in the service of denial: If bad things are happening to you and I stay away from you, then I’ll be safe. 

Such people often wind up offering what Dr. Rainer calls pseudo-care, asking vaguely if there’s anything they can do but never following up.  

Alison Hayes, the founder of Thriving While Disabled talks about other reasons people may not respond supportively to your chronic condition. 

“You also need to remember that a lot of people don’t understand the true differences between chronic illnesses and being sick.  They may be assuming that things will ‘go back to normal’ when you get better, not understanding that this is your new normal. 

…. The better you can explain what’s happening to them, the better chance there is of them understanding what is going on. They can understand whatever changes have been going on in your life and be able to help you and be your ally instead of potentially becoming another source of stress.” 

The reasons why someone decides to leave your life rarely brings comfort. But understanding what causes friends to disappear during chronic illness provides us with valuable insight on how to avoid it.  

Ways to help friends' transition to your new normal. 

1. Have an honest heart-to-heart. Be as honest with them about your condition as you can so they don’t have to guess what’s happening – or worse – assume it’s nothing. 

2. Ask them to ask you questions when they don’t understand something. Oftentimes, people will remain silently confused because they are afraid to set you off by asking. Allow for genuine questions of understanding and curiosity.  

3. Set expectations both ways. Like I said, needs and boundaries change quickly but most people aren’t capable of understanding, or keeping up with, those changes. Let your friends know what you can and can’t do anymore and why. Ask them for specific ways they can support you. This leaves them with options and allows the relationship to begin shifting from its previous patterns. Maybe you can’t go out with them much anymore, but they can come visit you. Maybe your finances won’t allow for road trips or movie nights, but you can plan potluck dinner parties at each other’s houses.  

Asking my friend to start raising money for me was clearly not something she understood as necessary because I didn’t have those hard conversations about my reality first. Make sure you give people a chance to catch up to your new reality, and they will be more likely to seek understanding about what is happening to you. 

No matter how you tackle the issue of changing relationships in your illness, it’s important to remember to take nothing personally. I know, I know. Seemingly impossible in the moment of rejection.  

But over time, it will help you a great deal to know that people’s reactions to your illness are always more about them and their stuff than you and yours. Their rejection often comes from a place of unprocessed fear which can breed all kinds of ugly outcomes.  

Practice self-care and practice it often. Taking care of your emotional, physical and spiritual needs is paramount to feeling better and being able to cope with the inevitable slopes you will go through.  

For more help understanding and treating Lyme Disease watch my video tutorial Lyme 101.  

I hope you find this information helpful in your healing journey! For more help understanding Lyme disease, prevention and holistic treatment options check out my new book The Lyme Ease Survival Guidebook