Friendships with Lyme Disease: Why Losing Friends to Chronic Illness is so Common

VIDEO TRANSCRIPT

Hi, how are you feeling this week? Let me know in the comments below give me a little thumbs up and subscribe while you're there, it really helps support my channel. This week I'm exploring a very common question in the Lyme community and chronic illness community, why so many seemingly solid relationships and friendships seem to crumble at the weight of Lyme disease diagnosis for other chronic illnesses.

Before I got sick with Lyme disease I had this really tight-knit group of friends, my ride or dies, and as I was sharing my experiences on social media, I started to lose these relationships and very surprising and painful ways.

One example of this is as I was struggling financially. I started up a GoFundMe page and, I began asking those 20 to 30-year relationships, those friends, to please could you, you know, promote this? Could you share this on your social media for me? I got responses, like, well, maybe you could just get a job now.

I also got some comments like, Oh, your Facebook posts are all just poor me. Those comments just made me feel like not only were these friends over my social media posts, but they were over me and all my problems.

Pretty much, everyone, I speak to in the Lyme community has similar stories, even family relationships, romantic relationships, friendships just seem to crumble, and people are left wondering why?

I have a few of my own theories around this, just that, with chronic illness, our needs and our boundaries drastically change, and our relationships may struggle to change with them.

I seemed to expect my friends to just kind of know how to show up for me without having those conversations, and vice versa, they were not aware of what I was going through, and they were expecting me to show up in their lives the way I always had, and now I was completely unable to do that.

So when they weren't showing up for me I became resentful, and when I wasn't showing up for them they also became resentful.

Another reason around this is that people can be extremely uncomfortable with vulnerability, me just showing up with my heart on my sleeve sharing my struggles, and asking for help could actually be very triggering for some people because they have never actually faced their own vulnerability or embrace their own needs.

A New York Times article I read on this actually suggests that people feel the harder they have the harder time they have connecting. For example, people may actually have too much empathy rather than not enough.

It's so easy for them to realize that they could be impacted the way that you're being impacted their children or their family members or whatever, it kind of wakes them up to the fragility that we all have.

Psychologist Dr. Rainier describes this as stiff-arming where we are subconsciously, not even aware that we're doing this, kind of trying to separate ourselves from any traumatic experience, you know, thinking that, hey, this is going on with you if I keep my distance from you, then that means, it can't affect me.

It's magical thinking and the service of denial that if you're over there and something bad is happening to you if I keep you at a distance, it's not going to happen to me or the people that are in my family. So if you have anybody in your life that is doing these stiff-arm techniques it is very common for them to be asking, or, offering this “pseudo care” kind of really generic general offerings of help, like hey can I help you with anything, but never following up or following through with any of those offers.

It's also important to remember that not everybody can understand chronic illness, especially like with Lyme disease, when there are often really good days and really bad days, so trying to understand that from an outside perspective, is very difficult. How could she be doing this one day and unable to get out of bed the next day? It just doesn't click in their minds. If all you've ever experienced is a week-long illness in your life and in your family, then it's really hard to understand. Like why can't you just take some medicine and be better? That this illness may be your new normal and a lot of times people just don't have the skills to support you in that.

The reasons someone may decide to leave your life may bring very little comfort, but understanding these things can really help us to not take things personally, and give us some tools on how to avoid it in the first place.

Giving your friends and relationships some time to adjust to your new life, your new normal is very important. It’s very helpful to have just a sit-down heart to heart with your loved one and explain what's going on with you and how they can support you in very specific ways.

Invite them to ask questions about your illness, so often, people just well remain quiet and confused because they're afraid to ask what's going on. So, allowing your friends and your relationships to get involved and really trying to invite curiosity.

It's also important to set expectations both ways, let them know specific ways and things they can do to help you, as well as letting them know how you're going to be able to show up in this relationship and what they can now expect from you.

So, maybe you're not able to go meet at the bar anymore but you can have a little potluck get together at your house or a movie night or online zoom chats, or whatever you're able to do, let them know and give them that expectation that hey, I need you to show up for this.

Asking my friend to help me raise money for my medical expenses wasn't clearly understood because I didn't have that hard conversation with her about my reality. So make sure that you're giving the people in your life time to kind of wrap their mind around what's happening. Know that however they're reacting to your illness is oftentimes more about them and their stuff, then you and your illness.

No matter how you decide to deal with these changes in your relationship amongst a chronic illness, it's important to not take anything personally. I know that is seemingly impossible in the midst of rejection, but over time, this is going to help you a great deal to know that however they are reacting to your chronic illness is almost always a lot more about them and their unprocessed fear, which can breed, all kinds of ugly outcomes, than it is about you and your illness.

I hope you find this information helpful in your healing journey, I have included some resources below in the description for you to learn more about this topic. Make sure that you are practicing really good self-care, supporting yourself emotionally, physically, spiritually throughout your healing journey is crucial to navigating the slumps that you may go through.

If you enjoyed this video please give it a thumbs up and hit subscribe on YouTube, and I will be back next week with another video! Until then, keep healing.

Lyme Disease Education, My healing journeyJenn HylaLyme disease, Chronic illness