Lyme and relationships

Don’t get me on the subject of people!

On the other hand chronic illness creates transparency of other’s personalities . You get to know what they’re really like, vs who they might want you to think they are.

Life is short, don’t waste your time or effort with people who waste yours.

That said there are good people out there too of course.

If you find the need to tell somebody new in your life, or at at school , socializing or work , don’t be in a big hurry to tell them. It’s all about baby steps. And then see how they react or don’t.

Post Edited (astroman) : 10/26/2022 9:58:05 PM (GMT-7)

I lost many relationships, friends and family over lyme and bartonella. I was sick for years test after tests with negative results and them all thinking I was a hypochondriac. Nobody understands except someone else who has these same chronic infections. I couldn't even be in a relationship. Was with my kids father 6 years on and off and was understanding but then realized narcissistic tendencies. I was able to go to most appts. alone bk then but my kids father would say things like "all your appointments drive me crazy " and sometimes "If your tests are negative then idk tou must not habe lyme " it sucked because I started treatment in the end and was so sick kn bed and we had broke up and it didnt work out and he moved soneone else in and their kids. It sucked and was pretty much just me and my 3 kidd after that for a while with my mom and dad who were also narcissistic who want to control you when your sick as a way to keep you down and make you depend on them to get better. The partner I have now understands a lot and helps bring me to appts. and such and with the sauna and meds etc.He helps me drive and to work as well , thank God. I know other ppl have their own responsibilities also and are limited to help us. I'd also meet people and tell them what I have only for them to only want to hang out, go places, shopping , drink etc. explaining to them I couldn't because I was that sick. It was always "Are you really that sick , and you don't look sick , you'll be fine come on" . One guy told me it'd be hard to make friends being sick, the freaking nerve!! Some people find put you can't be intimate, go out, have to sleep early, be on a diet, go to endless appointments, need lots of care, and then the whole relationship dynamic changes. It was so hard to cope with. 30 years of negative tests for lyme and Bart until I used Igenex lab and came back positive for lyme, Bart, and Ricketts (Rocky mountain spotted fever) even though I tested neg through my docs office for years. It's a lot. I prayed to God for a while when I became more a believer. My partner of a year also had made snide comments about " I just feel you're making it up" and my sons father had said "I don't believe someone can have that many symptoms at once, all negative tests, this was before Igenex" this all hurt me and broke me down. I thought I was going insane or suffering from trauma or ptsd or schizophrenia or something crazy. Once people realized I couldn't be intimate or hang out or have a normal life they didn't stick around. Hopefully this experience wasn't TMI. This happen to anyone else??

I have amassed a wonderful group of friends who understand what's going on with me, or understand it enough to trust that when I need to cancel/modify plans or say I'm feeling crummy, that it's for a legitimate reason. But it took a while! I definitely had to deal with the heartache (sounds dramatic, but it's the right word) of letting go of people who didn't get it. I wish them well, and hope they never have to deal with one of the many illnesses about which mainstream medicine (and society in general) gaslights and abandons people. But as astroman said, those people are not worth your time, and it's not your job to convince them.

I lost some friends at the beginning of my chronic illness, and it made me reflect on what people want from friendships. It varies! One of my closest friends wanted someone to be there for her when things were tough, do activities with her, and constantly be having fun and laughing. She had no interest in supporting other people, having a chill afternoon at home, or having serious conversations. I loved her, and she's a great person in many ways, but the things she and I wanted from friendships were not compatible once I got sick. Conveniently, her wife is very caring and serious, and now is one of my best friends! Other people I thought of as mere acquaintances stepped up and stuck around, to my surprise. Your people are out there, but it's hard when they're not the people you were hoping they'd be.

Try finding other chronically ill people. People with long COVID, ME/CFS, autoimmune conditions, Ehlers-Danlos, and many other conditions will have a better understanding of what you deal with, and they're looking for friends and relationships as well. I can't give you dating advice especially, since I dated before the world of apps, but people still meet each other in the ways they did before - work, school, hobbies, volunteering, support groups, through friends, etc. An app actually sounds nice because you can make a note that you have a chronic illness and thus weed out the people who are not okay with that automatically! But for people you know in real life, you can mention it in conversation and see how people respond. It's easy to say something like, "I have always wanted to volunteer there, but sometimes I need extra downtime because of a chronic condition I have, so I volunteer at their one-off events."

Don't let yourself fall into the internalized ableism trap about this. There is nothing inherently less sexy or desirable about someone with a chronic condition. Attraction is complex, and I assure you that whatever attracted people to you before getting sick will continue to be attractive. Plenty of people would prefer a movie night to a night of clubbing.

Honestly when I think about my friend group, everyone has something going on - whether a physical illness, mental illness, injury, disability, or neurodivergence - that makes them need accommodations sometimes. I'm 40 now, but this has been true for at least a decade. Everyone. Sometimes I feel okay, but my friend is feeling too anxious to be around people that day, or my friend is feeling dizzy from her last immunosuppressant infusion and can't drive that day, or my friend has a cold, or my friend has a permanent T-band issue that makes long walk not a thing she can do, or whatever. It might feel like it's just you, but it's everyone.

You don't need to disclose that you have chronic Lyme and Bartonella specifically, if you are worried about people having misconceptions about whether those are "real" illnesses. You can say you have "complications from tick-borne disease" or "chronic infections" or "immune system/nervous system dysfunction." I actually find naming the conditions I have because of tick-borne diseases (rather than specific infections) to be more helpful in getting others to understand what I deal with. Dysautonomia, chronic fatigue, brain fog, adrenal issues, hormonal imbalances, IBS, mast cell activation syndrome, etc. paint a clearer picture of my issues than just saying the name of an infection that people might not be familiar with and which presents differently in everyone.

I'm just rambling here, but want you to know many of us have thought about this and felt discouraged. But if you look around, mainstream news sources run articles every month or so about how and why it's so difficult to make friends as an adult, and numerous movies and shows depict the challenges of finding someone suitable to date. Sometimes these things are just tough. But sometimes what makes you feel unusual (even though I'd argue it's more common to have a chronic condition than not!) is exactly what helps you find your people.

comment above : "You are going to the ER to make sure you aren't dying and the ER is generally good at making sure people aren't dying. "

- Quote of the century.

Well said.

Now if only the If the general population would adhered to that. ER is obviously way overused.

straight-F-student said...
thank u all for your kind responses to my post.
I feel the need to clarify something. I did not go into the ER with high expectations as someone above told me to "manage them".
To put it simply, I went to the ER so I wouldn't die from some of my symptoms. That was all.
While there, I was just surprised by how rude the doctor was once I mentioned Lyme, which I wasn't even going to mention at all, until he kept prying.
So no high expectations from me, no let downs either, just mildly surprised by common courtesy that was missing.

For sure!

That was originally my point that I forgot to include. My point was that some ER doctors will take you less seriously if you mention Lyme. It's unfortunate, but it is true. I noticed that in my experiences and I've noticed in other's experiences as well.

My first time I went to the ER I didn't even realize that tick borne diseases were the causes of my issues. I just knew that I had been declining in health for several months. I was probably still in the early disseminated phase of the disease and it was going neurological. I was having stroke like symptoms. The ER doctor tested me thoroughly, to include a CT scan of my brain, and found nothing. I felt like death. I legit must of thrown up, at some point it was mostly dry heave, like a dozen times my 4-5 hours in the hospital. When they discharged me the ER doctor looked at me with a straight face and told me I was just stressed out. I was too sick to be enraged. I just wanted to leave, but it was crazy that the ER doc didn't think I didn't know the difference between being stressed and something being medically wrong in my body. I suspect they use the stress/anxiety diagnosis when they are unable to find anything with their tests.

Hi Straight F, A little bit of positivity for you: Try not to let your current state of health affect how you feel about your future. I don’t know how long you’ve been treating, but the way this is supposed to work, is with treatment you will be on an upward trend of resolving symptoms. Ideally, your most debilitating symptoms should improve to the point where you have regained quality of life. And in your case, this will include an ability to meet new people to add to your already stellar friends who show what they are really made of by standing by your side no matter how long it takes.