Where did all my friends go?

I have noticed that since I got sick my friends seem to have disappeared, even my husband spends much less time with me. Is this common? Did your friends rally around you or did they pull a vanishing act?

Sorry to hear that. I'm beginning to think Lyme disease is the new leprosy.

Vanishing act...

I'm sorry you are another lymie experiencing the same thing.
This is why this forum is such a blessing. You can come on here and find people that will understand you very well.

marieLS

Hey me too. Have one friend who stuck around and actually believes me. Funny thing is, here I am almost 3 years in treatment and her son has all these weird symptoms and I tell her LYME. I send her the link to the Igenex test and sure enough he has lyme & friends. So now I am offering her information and comfort. It took him a while to understand what he has to do to get better he thought a few pills would do it. So it was a good thing she stuck with me so I can help him plus she understands the illness much better now.

So yes you may lose friends but oh well. I did still try and email my long distance friends so as not to lose contact with them. Phone calls not so much but anyway do what you can to keep in touch too. A card on their birthday etc goes a long way and hopefully some might come around.

I remember with great clarity driving 3 hours to the LLMD and going to my friends to spend the night while I was finally well enough to make the drive I needed to go to bed. I did all I could to stay awake but by 7 I had to sleep. She was so puzzled why I needed to go to bed so early, if only she knew I wanted to go to bed at 4! Fortunately I am past that stage and can keep normal hours and I no longer need to sleep after work. But it is hard to keep friends when you are exhausted, on a crazy diet, strict schedule for medications, and struggling to just survive.

I hope you have at least one good friend or relative who sticks by you. Sometimes that is all you need and I hope your husband comes around.

awe, I have had quite the opposite happen. although my husband had a hard time with this, it brought us closer together. and everyone on facebook is rooting for me - people in my town are coming to me and asking me questions about it. I am like the "lyme rep" so to speak.

I am sorry you are struggling with this - but you have the power to turn this around and make it a positive experience rather than a negative one, no matter how sick you are. Attitude is key to healing, and you NEED support from your friends right now. cry it out if you need to - let your husband see how lonely you feel. if he loves you he will help you, and so will your friends. if they are true friends they will stay by your side.

try to keep your chin up!! I was so sick that I almost admitted myself to the hospital back in January, and now all I am left with is muscle twitches. i am still under treatment. there is a light at the end of the tunnel, hang in there!!!

Chapelle, maybe you should start a support group. :)

Most of them are gone. Just remember, no matter what, God loves you and is with you through it all! Prayer seems to help me a lot.

They can't wrap their minds around it; they think ur crazy instead of sick; they don't understand why ur making such a big deal out of it; they can't imagine being that sick unless u have cancer or a heart attack;the list goes on and on. Oh and they think ur a hypochondriac. Margaret

Exactly Margaret --- without the tagline of "cancer" or "heart attack" --- they can't seem to make a connection. Only after telling my mother that I'm on meds often prescribed for MS patients, did she finally wake up. It's too exhausting so I retreat.

-p

What a wonderful thread and such a reality check huh? Thx for posting LL. My ideas:

Most people simply don't know what to say or do when one is suffering. People in general are good natured. Most people want the BEST for the sick but have no reference point (of understanding or insight) and are concerned they don't have any value to offer. We as human beings typically do not understand the power of a single word or a hug, a smile or a squeeze -not even a little uplifting text message - so I've learned -until we've experienced the depth of despair ourselves.

Here's the other component to consider, which makes people want to disengage: Those of us with the neuro symptoms and esp. Bart have the added factor that appears to others we have lost our minds and are not acting like the people we once were. Our friends couldn't possibly understand the change in behavior and nor should we expect them to. I for one love to buzz around with positive energy and gravitate toward those with the same or a higher vibration..to lift me up.. But I still have time to lend a hand, a hug, a message etc to those who are suffering now that I've been through hell and back.


Some people indeed are selfish and we need to weed them out like weeding a garden or doing Spring cleaning-- most other people are just being them/consistently cruisin about trying to handle their lives, families, jobs, finances and have a difficult time finding the balance in it all.... We live in a fairly self-centered and serving society. There's no blame here just fact as I see it.

The psychological insight any sick person who has returned to health is priceless.... It's more powerful than priceless (just can't find the best word choice here).

Here was my experience:

1. My family in another state was amazing (they're usually not hahhaha hahhaha) just kidding. My severe sickness brought us closer again. Talked on the phone often. They offered to stay with us. They flew me out to see them.

2. Boyfriend of 9 years was a super hero. Had no idea he had it in him to tolerate what he did. Super supporter and encourager he was. Brought me organic fresh juice every morning by my bedside before I even opened my eyes. Due to the Bartonella I was either screaming (I don't usually raise my voice) or crying uncontrollably -for hours or so depressed (don't miss that) he would put my head in his lap on the couch in the evenings and just hold me -- for a good 6 months. Among so much other support. That's love. I love him even more now. And I've been pretty smitten over the last decade.

3. Other than that only 1 gal in our group of girlfriends (yayas) called me about 3 times per week on her way to work from pre diagnosis until now even. Amy was awesome. And I was snappy and unreasonable with her too much but she didn't give up OR take it personally.

4. I was shocked and very hurt that the other girls were nice when we saw each other but didn't call/text or reach out at all. I was SO devastated by it.

5. Im back hanging out with them on the weekends etc now but accept them for being them. No hurt feelings - still love 'Em...

The psychological insight any sick person who has returned to health is priceless..and it is our moral obligation to extend ourselves once we heal...

Those of you who don't have supporters I'm so glad we have this forum and that you are reaching out. And so many of us love you and would do anything for you if we lived near you. Feel loved and grateful for your blessings and hang in there. You too will get better!!!

L o v e
Sarah