To make a friend, I have to change Lyme Disease

As I struggle to do my taxes, among yet another brutal week of treatment, my credit card transactions tell me something very clear that I pretend doesn’t exist. The transactions read: Doctor, doctor, supplements, doctor, supplements, and so on… 3 years ago it read: My favorite bar, a new restaurant, clothes, crossfit classes, 5k registration… Its not only that my life has become all about my health, its that there is no friendship in my transactions.

Almost ever previous transaction was a socialization with friends. We went to other countries, we worked out together, we tried new foods. I had 2 expenses on my credit cards for dining out with friends for the YEAR. Loosing the people I thought would be my friends forever has been something I try to forget about constantly but it never stays hidden. I don’t consider myself a sick person or a spoonie but as I look over my credit card statements I have nothing to disagree with that labeling.

I very much consider a friendship a two way street and I’m sure some of the burden falls on me. I am not a perfect friend. I just thought my friends would be there for me when I needed them.

At this point, my friends are 90% people who share my illness. They are the ones who understand the suffering without saying it, the ones who let me cancel plans without an interrogation, who understand why I am broke and struggling, because they unfortunately get it because they live it too.

When I sit pondering how to raise awareness for Lyme Disease, I’m at such a loss because even my friends don’t care. How am I supposed to rally strangers if I can’t even rally those who were my friends? I have no doubt I will return to an at least functional level one day but I frequently worry about what my friendships will be like. There’s no logic in returning to friendships that weren’t there for you but how do you find the ride or die friends? I feel that having all friends who are struggling with Lyme gives you a narrowed view but at the same time how do you pretend to be normal when you arnt? How do you explain what you have been through without looks of pity or disregard?

As I finish counting transactions, the answer is still the same, that I have no idea how to maintain relationships with friends through Lyme. Honesty is scary and faking it is insincere.  All I can hope for at this point is that my awareness efforts will some day make a big enough impact to be understood in the way cancer and HIV is now. If they can do it, I can do it. And, no my taxes still are not finished.

To make a friend, I have to change Lyme Disease

Lyme Friends vs. Friends

The other day I put up the same status on my personal Facebook and my Facebook with mostly Lyme friends. One got 26 likes and 20 comments. One got zero and zero. This might seem shallow but this is such a truthful reflection of what life is like with Lyme.

I probably have about 3 people I would consider my friends these days (non lymies). I love them very much but they are very busy with their lives and dont have time for me much. Don’t get me wrong, I appreciate literally everything they do for me and they put in whatever they can to help… but Lyme friends, they instantly get it.

Lyme friends don’t need to commiserate on the symptoms. They say “this worked for alleviating the symptoms” or they say that sucks. Others say nothing or they say well yeah I hurt too after I went to the gym the other day. What I wouldn’t give for normal gym ache anymore. I understand they are trying to commiserate but its not eve close to the same.

I wish I had reached out to others with my disease way sooner than I did. To have people who understand not only the physical pain but all the other bs that comes with Lyme are really irreplaceable at this point. From just airing frustration, inside Lyme jokes, to being able to talk to someone who faces literally the same frustrations of not being understood by your support team. Having Lyme friends is one of the few things that keeps me from not feeling so isolated from real life. Its so frustrating we cant all help each other out physically because we are all held back by the same disease but the network of people who get it is really what every sick person needs.

Lyme Friends vs. Friends

Why is it rare to care?

With Facebook posting their friend’s day thing and heading back to my city soon I’ve been returning to the idea of friends. My Facebook friends montage was entirely from years ago. Not even anything in the last two years. This is because I don’t go anywhere or do anything with people from being sick. The great friends they showed me are all my co-workers who forgot I existed 2 weeks after I left my job.

It is a daily struggle for me to not be resentful of the people I called friends. People I thought I had real connections with don’t return my calls, people from my childhood who don’t even know I’m ill, or people I vacationed with I haven’t heard from in two years. The people I talk to now are my few really close friends and people online. I continually think, well, if people don’t care if I’m okay then I guess that’s the end of our friendship. But then they were all gone. Pretty much if I don’t reach out to people I won’t ever hear from them again or it will be months.

I have been accused of being overly passionate about my bonds and connections with others before but I dont want half-assed friendships. Not texting back is rude. Knowing people are sick and ignoring them in insensitive. Why do I feel crazy for thinking this? Why is it such an abnormal thing to reach out to people?

I don’t know why things have become this way but I’m ready for a change. If anyone knows where the ride or die friends are tell them to give me a call.


Why is it rare to care?