Making Friends? Loneliness?

[lindseybee]

How do you all go about making friends? When I got sick, I lost pretty much all of my friends because of my "flakiness" (really nice of them.) While illness is a great filter for jerks , I'm still quite lonely. Any advice for someone wanting to make friends who are understanding of their illness?

[bellgirl]

See if there is a support group in your area. I've been wanting to start one, but have only found one other person in my city with it. I know there are more. We finally met, and have talked on the phone, too. I also go to a Fibromyalgia group that was already established. They have been very welcoming. Where are you living, if you don't mind me asking?

[bebe127]

Lindsey,

I do agree with Kimbellgirl. See if there is a group in your area.

Unfortunately, I have not found a group near me and even if I did, I don't drive often or too far from home, so even if there was a group in my area, the driving would still pose a problem for me.

The only "friends" I have that truly understand what I'm going through are the people on sites like these, and I'm so grateful to have found them. I also frequent blogs of people with dysautonomia. While reading of their experiences I also look on their blog to find other blogs and it just goes from there. Many have sites that point to other blogs, articles, information and encouragement. Also, there are many groups on social networks like Facebook that can be helpful as well. Sadly, I don't know anyone around me personally with the same issues as me, and yes, it can be quite lonely.

My immediate family is as understanding as they can be (hubby and two teens), but there is just something about talking to someone that fully understands because they are going through the same issues as you/me.

Please feel free to pm me. Just know that you are not alone in any of this. There are many of us out there that are going through some of the same issues.

Feel better soon

[Lel]

Haha, I laugh all the time about POTS being a "jerk" filter, especially in terms of dating! That said, I've "lost" a lot of "friends" as well. I try to remember that if they aren't willing to be flexible with me and my situation, then they were never really there for me in the first place. But that doesn't help fill the new, gaping void. Making new friends is tough, and dysautonomia makes it feel impossible. Most of my best friends are out of state, and my major brain fog makes just talking on the phone difficult.

This site has really helped me feel less isolated, though it still gets to me. I've been unsuccessful finding POTSies in my area, but I just signed up for the Meet Others program on Dinet. Perhaps that would help you find someone local. I also started going to a therapist. If you aren't already, I recommend it. It's helps to have a sounding board for fears, concerns, ideas, etc... Often universities will offer very reduced rates (mine is $5 per hour) if you see one of their grad students.

Hugs + health!

Leslie

[alijames]

HI

I have been ill with this--including cerebellar ataxia/visual problems for 19 years. First I had to leave my job,

then I got cancer and my husband, who'd been cheating because I was "no fun any more," when I got an advanced

case of breast cancer, he was out the door. Then I was on my own without insurance, house, having trouble walking,

breathing, gave up part-time work, by this time it is 9 years into it. Two sons start to head out further afield for work.

Dad is elderly. Down to 5 to 10 loyal friends. Then I got weaker, have to use a wheelchair, got a catheter, friends

"moved on."

What about me? Can I move on? Do they think I am stuck because I move slowly??? I have to rest a lot.

Many attempts at friend-building have been hampered by my lack of stamina!! I just don't have the money or the

stamina to go to the movies, go shopping, travel...staying home is not very entertaining I guess. When people do come, I feel I have to be very entertaining or they will get bored....Down to maybe 4 friends and two sons not very nearby. Lots

of alone time!!!

alijames--Maine-- is any body else nearby??

[Racer]

I have aspergers, this makes it hard to make and keep friends. I am great at saying all the wrong things at the wrong times!

The best advice I have on making friends, is to identify the stuff that interests you, and join as many groups/clubs as you can on those topics! This is how I have made all of my friends.

I enjoy bicycling, photography, and nature. I belong to all of the local groups and clubs related to those interests. This usually means at least two different club/group related activities a week. You get to know these people in the clubs, and you end up becoming friends with some of them.

[Angela]

aljames, i don't even have words of advise for you except believe in yourself, your strength. sounds like you got handed a bad deal this round so to speak but sounds like you must have something better coming if you are true to yourself and can let all that go? don't know alot about cancer, just that you need to stay positive which is hard with pots and every other disorder sometimes. your husband must have suk'd for awhile anyway.... right? so hopefully his absence will help in some aspect ( I do understand insurance part tho) i can't even start to understand all you go thru. hope you have a sweet night:) and btw, 5 loyal friends is all anyone needs, i tend to think 3 will do the trick.

[AussieOI]

I think someone once said you can count the number of real friends you have on one hand or two hands (can't remember). I agree with Angela that 4 real friends is more than OK! I think a support group or taking up some sort of hobby could be a good way to meet friends.

Some of my friends have been great and often it is the ones who have had a few health issues themselves as they can relate to it. Meeting some people who are going through something similiar could be a good place to start. Some people on this site also mentioned a few facebook POTS pages/groups. I have looked on these and there seem to be quite a few people in their 20's on these sites and I notice from your profile that you are also young, so perhaps joining some of these sites could be good?

[Lel]

ali, a big hug!

[roxie]

I've been sick since I was 12 and have never really been able to keep up friendships very long. Sometimes I have acquaintances that I see every once in a while, email and maybe text but nothing real. I have my parents that's about it, it's very hard for me being in my twenties I want to be normal, I want to be independat and I want to have friends but everything it takes to take care or myself takes all my energy, I dont have the ability to get out and meet people. I've been frustrated about it a lot lately because I feel stuck and trapped but I haven't figured out how to change it.

[SeattleRain]

I have sympathy for those with POTS who are very outgoing and love being around people. After moving here from another state, I quit my job to work from home, lost my co-workers I was befriending and after breaking up with my girlfriend I became much more reclusive and isolated. One day it just hit me: I don't have a girlfriend and I have no real friends here. Weirdly, I didn't really care. I have 2 dogs, and they're a man's best friend. So, when I got hit with POTS my social life did not change very much. The friends I keep in touch with I chat with online so POTS hasn't changed anything. It is a little annoying cause right around the time I started having problems, I was getting out a lot more and finally learning how to put work on hold...

At this point I couldn't care less about making friends but I am a little lonely. I'm jealous of those with spouses on here. I wish I had a wife, preferably with a career in cardiology That, or someone with a worse case of POTS than me. That way, I can feel like I'm taking care of someone else and it'd help make me forget about my health problems.

[corina]

Hi everyone, I'm moving this topic to dysautonomia discussion to generate more posts. This is a really sensitive topic that lots of people can relate to. As not everyone reads the chit-chat I think it deserves to be in dysautonomia discussion! I also like to add that I'm very glad you all have found this forum. I remember how much it meant to me to not feel "alone" anymore!

[ramakentesh]

In australia the male culture is based mainly around standing around and drinking alcohol. That poses significant challenges

[ramakentesh]

Seattle - can I ask what career allows you to work from home?

[ladyt]

In australia the male culture is based mainly around standing around and drinking alcohol. That poses significant challenges

jupp that it would.

I still have contact Whit some of my friends. But i dont think i am close to any one really. First it was They was bissy partying etc, Then Whit children. I have my man, but he has most of the time been gone a lot. Now we have a lilte boy:)

When i think of the lonly years behaind me it hurts a lilte. I am generaly lot better now ( but still very potsy and all the rest). So if it keeps i migth be Abel to try building a sosial life later. One thing is that i dont drive a car. More important is that its hard to gett to know People where i live. Espesally when grown up. But rigth now i dont have the time, Energy or health to spare.

But my man and i try to invite People for meals etc etc. But it takes a lot out of both of us.

And Yes , its not the number of friend that count, but the quality:) so i selfishly hope to one day have a few close friends that can ust come and hang on the sofa. Ust one or two would do nicly

But i am lucky to have my man, and maby now he is working closer to home i will gett to know him better..... Lol..

Its no fun being lonly, not at all. But it migth be a very small comfort to know u are not alone.

[SeattleRain]

Seattle - can I ask what career allows you to work from home?

I started an online advertising business in 2008 so unfortunately I can't recommend a company or anything. I do however know of lots of companies that hire people exclusively from home. There's also a ton of freelancing opportunities out there (design, writing, clerical tasks, etc). Don't want to get too off-topic for the post but that's what I do...

[spinner]

Chronic illness kicks you in the teeth in more ways than one.

Ive had close family members tell me they didnt believe i was that sick.

Im working full time now, but others inferred that i was lazy.

But mostly, people just dont really care, much less even remember that youre sick at all.

Its the handful of true friends that make life worthwhile.

Its not easy but the way i look at it is i weeded out a whole lot of phonies.

It also makes you appreciate the character of a few people who really care.

Agree that only chronic sufferers can relate and befriend in the way we need, other

than parents who love unconditionally.

Or if youre lucky, a spouse.

My spouse pretty much fit the above category of disbelief. Im currently separated.

[ladyt]

I am so sorry that Your wife didnt belive u. Divores are hard.

Maby a good thing my partner never really knew me when i was healthy

[Foggy01]

Yeah it's fairly impossible to make them with something like this.

[ladyt]

But not totaly impossible. I have ust started to gett to know the next door lady. Of we will be come friend time will tell. She has been ill and off work for some mnths. So she has been over for te a couple of times. Living Whit cronic illnes her self make here understand my situation better.

But Yes in general its a lonly illnes, that makes sosial life hard.

[ukwildcat]

Casper, Just wanting to warn you about getting to close to neighbors. My neighbor also has a chronic illness. We became friends and were friends for 7 years. However, mostly due to our spouses we got into an argument, now we don't speak to each other. Even though my feelings were very hurt, I try to be nice but she doesn't in return. Let me tell you by experience, it is vey rough when you have a disagreement with a neighbor because you see them every day. I am a person that hates conflict and now I seem to have it every time I let my dog out.

[friday7]

I am currently facing this situation as well. I have one friend that I never see. I've been having a hard time because i need to have more support or fun outside of my home. I only live with my Mom so I do get lonely. Right now I'm currently trying the mettle groups in my area. You can go to meetup.com and find some in your area. I can't always attend these groups but what is good is that you don't have to be tied down to a commitment I've found a board games group I like. I tried another that I didn't like very much but there's more in my area I'd like to explore. I wish i had a little more money because that sometimes keeps me from going. People will often meet for dinner or movies and I can't always afford that. But I'm trying..Hopefully I'll find some more group that I like.

[lynnie22]

I can certainly relate to feeling lonely and not being able to see friends the way I used to. I understand how frustrating it is when people don't really understand what it's like. My closest friends really don't "get it " I manage to get to work which is close to my home where I see people for my work-- and that's my social life for the most part. I can't really go out much and it's really hard to visit people which people seem to expect all the time. Anyway, I'm really sorry that you're in the straits right now. Hopefully you'll start feeling better. Tomorrow I somehow have to get myself on the Long Island Railroad to visit a dear aunt who is in the hospital. She understands how I feel, how hard it is but she's going to have surgery and I must see her. Boy that walk, those stairs, the distance is so challenging. Since I have joined this group, which hasn't been long, I have found it so helpful. It's not the same as being with someone in person and I miss that. But it's really great to be able to talk to people who understand. That should be able to help you all of us. Do you think that if people understood this illness better was more familiar with it that they'd be more understanding? Sometimes I think so and sometimes I think that people will be sympathetic but can never fully understand anything unless they've been there themselves. Anyway hang in there!

[kitt]

Chronic illness is difficult for everyone, but I think it's especially cruel when it affects children or teens.

Have hope. You're young and you don't know what life has in store for you.

I don't have advice but I do have a special hope for teens and young people in their twenties with chronic illness.

Sending you kind wishes and hoping for good things for you,

K

[Lel]

I'm jealous of those with spouses on here. I wish I had a wife, preferably with a career in cardiology That, or someone with a worse case of POTS than me.

SeattleRain, I bet a lot of single, chronically-ill women would appreciate a guy who understands her situation. Keep hope!