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.