My wife has had Lyme for 6 years and was only diagnoised in October. She has lost most of her friends due to her not being able to get out much. They stopped calling, writing, stopping by, etc.
Some family have now started this. My wife is feeling lonely to say the least. It feels as though she is being written out of people's lives.
Anyone else experience this and what have you done to cope?
Posted by Yemaya (Member # 8842) on :
Unfortunately I am learning that this is a hard fact about Lyme. You really find out who your real friends and family are. What that word "family" really means.
You find that people don't like being around people who are ill. You also learn to appreciate those that, are there for you.
These revelations aren't easy to accept. Eventually you do. Along with so many other things about this disease. I'm still in the process myself.
She might find that support groups like this one {online} or maybe one were you are located might help. If she can manage either.
In the mean time just let her know she is not alone. I'll send her lots of Love and good thoughts.
Love & Light Posted by Elizabeth in MN (Member # 8466) on :
Yeah, this is a hard one. I have the same problem.
When I complained about it to one of my friends who has been chronically ill for 20 years (with a different disease), she reminded me not to forget to *ask* people to stay in touch with me, reminding plainly that I am ill and lonely and find it hard to keep in touch.
This a hard thing for me to imagine doing, and makes me realize that there aren't many people in my life I really want to ask, because it feels too intimate. But I'm thinking about it!
Posted by cgooge (Member # 7922) on :
This has been very hard for my wife and I to accept. You don't want to think that your loved ones have abandoned you but that seems to be the case. Not all of them have mind you, but some important one.
You would think that you would not have to ask people to keep in touch with you but apparently not. When we ask certain people why they have not called they get all defensive and say "I didn't want to bother you". Bother away!
Posted by cantgiveupyet (Member # 8165) on :
ive been getting the 'i left you a msg why didnt you call back' so now even if i dont have the energy to call , i send an email instead....just to let them know im not ignoring them, but am sick and dealing with healing.
I reach out more now....but most of my contacts are via email.
Its tough when they ask if im getting better, and i say noooo....
I do miss going out with my friends. A lot of my friends were coworkers....i dont talk to them now and that hurts sometimes.
My family is a whole nother issue all together. My mom has really distanced herself from me....so my dad has stepped up and my brothers as well.
Its tough to adjust to the new roles people play in our lives.
This board has been a great friend to me.
Posted by lpkayak (Member # 5230) on :
this is a big problem for a lot of us-we have talked about it before on here so if you search "friends" you'll probably come up with a lot of stuff---pretty good stuff too-i remember i started a tread after losing my friend of 30 yrs-she made fun of my pain "moving around"---it might be in medical too-
Posted by bettyg (Member # 6147) on :
everyone, go to Melanie Reber's post above ... share this w/family & friends.
Article on, "But you LOOK good! Wrong thing to say to a person with a CHRONIC ILLNESS.
Copy this and send to family/friends by email! Wonderfully written ... you should get some results as well as EMBARRASSMENT by them. good luck....
Also, when people dropped me including family members, I'd just say to myself, "THEY DON'T KNOW WHAT THEY ARE MISSING." I don't need them to DRAG ME DOWN. Life exists wonderfully.
Posted by HEATHERKISS (Member # 6789) on :
I think most of us that have been sick for any length of time have lost people in our lives...
My boyfriend left when it became apparent that i was going to be sick long term...
Freinds left too.
My family has been great though.... I don't know what I would do without them.
I cope by holding the people that stuck around close to my heart.....
and realizing that I really don't need the ones that left.
Also I have a great cat who keeps me company and I am so lucky to have him.
Best wishes Posted by treepatrol (Member # 4117) on :
Happened with us too. Its sad Posted by humanbeing (Member # 8572) on :
I guess I don't blame everyone for bailing out on me...
I am no fun to be around cause I am so inward in dealing with the pain.
My poor teenage daughter once told my husband she dreads coming home from school cause I am so down..usually in bed and in pain.
When I was among the living, I loved to go to movies or just hang out at a coffee shop with a friend. Now I can barely watch TV and I don't want to be around people.
My husband is definately lonely with out his old girl around...where did she go? Will she ever be back?
Sometimes I think my family would be better off without me...I feel such deep guilt and pain for having this illness.
Sorry to be a downer..see what I mean..who would want to be around me??????
Posted by hopeful123 (Member # 3244) on :
even tho i am working and do some socializing, i can't really force myself to go see some people i was close with. it's on a weekday night and an hour each way plus the two hours of the group.
they don't get it. i try to explain why i'm not showing up, but they don't get it.
i go to therapy once a week after work on a weekday night. that's too much sometimes, as well.
i have found myself tired of feeling guilty that i can't live up to these people's expectations. they certainly haven't lived up to mine.
they don't call and say, how are you, hopeful123?
they don't even email (those who have email).
it get reeeeeeeeeeaaaaaaaaaaaallllll lonely sometimes.
don't live with anyone, either.
i hear ya. i hear ya. Posted by char (Member # 8315) on :
Dear Humanbeing,
It is so hard to lose friends or at lose contact with them because of this sickness.
We feel it, and I make an immense effort to not take it personally as I have fortunately heard everyone's stories here. Human nature is to avoid the pain of being with our loved ones in pain. Thank God for the exceptional friend who perseveres, but they are the exception.
It is so hard to not be what we want to be for our family. they would be better off without me is the lyme talkin' IMO. I have been there and my kids with lyme have said the same thing. Not to take away from your situation. It seems it would be easier to die at times; yet you are here and I believe you can have a better and meaningful life. I am sure your family loves you and need you there even if you don't feel useful at this time. It will not always be like this.
I think you need to get that pain under control and it won't be so overwhelming to live. If you are too exhausted to convince your dr, can your husband put on the heat to get you some help?
I am upset for you and am considering kicking up a fuss for you! Let me at 'em!
we are here,
Char
Posted by kgooge (Member # 8407) on :
Just logged on and saw that my precious, wonderful, loving husband had posted about my "friends and family" issue and my loneliness.
Chip you are so awesome and I thank you for not only listening to me, but for actually trying to find solutions and helpful words to help my hurting heart...you are more than I ever need and I thank our Father for placing you in my life...
I was trying to find the article on "But you look so good..." and wasn't able to find it. Could someone post a link to this or perhaps the member id so I can search it that way? It might be infront of my face, but my "fog" keeps me from seeing things right in front of me sometimes! Thanks to all of you who had replied and who have helped me to not feel so alone! It's so interesting to me how people who have never met or talked with each other can be so much more comforting and helpful than people who are actually in our lives. Thank you for lifting me up while I'm having trouble doing it myself... Lots of soft hugs, Kirstin
Posted by Moose (Member # 8545) on :
Yeah, I've had the same problems with this issue as well. There are two groups of people who have become estranged from me since my illness became worse 3 years ago.
One group is the Discovery Group, who I've always thought of as my Second family. We all love the wilderness, tend to be quite active in outdoor pursuits, work with youth and young adults sharing intrinsic values and perceptions, and shared a lot of ups & downs together.
When I ended up as the one going down, most of them have practically abandoned me, which has hurt me a bit. I guess they saw no use staying in touch with me when I am no longer able to participate in as much outdoor activities like I used to.
The second group were my co-workers. I was working up a bunch of new friends through my job, until I got sick and lost my job, and at the same time I lost many friends.
Not all of them have left me altogether; however, things are just not like it was. Sometimes, I wish they'd treat me like they used to, instead of like some invalid who lost her mind.
Oh well, as someone has said: Various people you meet have different purpose in your lives.
Some you only meet briefly, but may leave a footprint in your heart.
Some stay around for a while and serve a purpose.
Some remain for life and those are the ones you can depend on.
Now I have a new group of friends, which are you LYMIES, even though very few of us have a face.
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Lots of soft hugs, Kirstin