Feeling lonely

[dizzytizzy]

Hi everyone,

I've posted a handful of times over in the other forum, but thought maybe this belonged here.

Do any of you guys feel so, so alone? I've been sick (with various ailments) for about 15 years now, beginning around the age of 22.  Was just recently diagnosed with autonomic dysfunction though.  I've lost a lot of friends and acquaintances over the years because I don't have the energy/stamina to go out and do a whole lot. I've had to bow out early at get togethers or forego them completely due to my health. Most of my energy goes toward taking care of our daughter first, and then everyone else just kind of gets leftovers - if there's any left to had!

I stay away from typical social media too, because it largely feels fake and too much of "Hey, look at me!" It just doesn't feel genuine. And most of my family live in other states so it's really just me, my husband, and daughter. I feel so alone. We haven't told many people about the extent of my health conditions - largely because they're never "normal" things, always something odd that requires significant explanation and leaves me feeling too exposed and like a freakshow 😉

How do you all move past the loneliness? Have you been able to find genuine friends who understand your health restrictions? 

[Lainy]

Dysautonomia is just extremely hard to understand. And even more so from an outside perspective. I have one friend, who I know cares deeply about me but whenever it comes to health issues and trying to explain any of it I just get a blank stare. It's incredibly discouraging but I just try to focus on all the other ways she's a supportive friend. 

Another friend of mine is far more interactive about it and asks me every time we meet up how I'm doing, what's working, what I've learned. I think the difference is personal experience. She's had a number of her own health issues and knows the struggles that come with it. (though not dysautonimia) So she just seems to understand far better than my other friend. 

I don't really have acquaintances because I can't maintain any sense of familiarity with more people. I don't have the energy for that most of the time.  Some people get it. Some don't. Even within family. And I know searching for the people that DO get it is just sometimes something we don't have energy for. I haven't even tried explaining it to people beyond those 2 friends and immediate family. 

Something that helps loneliness for me when I can't physically meet up with someone is social media (I know, I know - boo  ) But if you can find communities online with common interests to talk about it really helps. I have a couple people online that I've never met in person but it helps ease loneliness a bit to send them a message about whatever interest connected us in the first place Art, gardening, TV shows, a band etc.  There's all sorts of groups on Facebook. Even dysautonomia support groups - you may even be able to find one for your local area and meet people who understand that way? 

I just want you to know it's not hopeless. It's totally possible to find genuine friends who will want to understand.  

[Pistol]

Hi - I HEAR you!! I used to be a nurse, working, also mother of 1 daughter, wife. I did it all, always did. When I developed POTS at 42 all of a sudden it all stopped. Now - 8 years later - I am disabled, mostly housebound, unable to drive ( seizures ) and went through periods of grief, depression. I did feel alone when I could not get anyone to understand the reality of my symptoms. Not my husband or doctors or family. The only one who understood was my PCP and the coworkers who saw me pass out at work all of the time. Now that I am fully disabled for a few years everyone knows that " I have a heart problem", but no one really understands the full scope of symptoms we have to endure. In my case it is the fatigue and exercise intolerance that causes me the most disability. No way to explain to someone why you need a wheelchair when there is nothing wrong with your legs and you are able to stand up or walk for short periods of time. YOU ARE NOT ALONE!!! Many of us are in the same boat. --- I had a hard time adjusting to being less "useful", but now I have learned to appreciate the ability to do what I can for my family, even if that is only cooking or sometimes cleaning or other minor housework. I am there when they need me, I can listen to them and I can love them. And in time they learned to accept and respect my limitations. --- Do not feel alone, you are experiencing what many dysautonomia patients go through. Be brave - write to me or other forum members if you feel not understood. We DO understand!!!  

[corina]

I'm sorry I didn't notice this one earlier. I will move it to the Dysautonomia Discussion forum as it will apply to many more members (who may not read this chit-chat forum)!

[Weary]

On 5/18/2018 at 8:25 PM, dizzytizzy said:

it's really just me, my husband, and daughter

In a hurry how, so will try to respond more another time.

i've been chronically sick for decades now so have experienced so many different aspects of how this affects social situations. I remember in the very beginning I didn't tell anyone i was sick, and then alot later , I couldn't get anyone to believe I was sick (!) and then alot later again, did indeed lose most of my friends and acquintances as i had less in common with them (from this illness) and now med maintence consumes me 24/7 so...

I like lainy's comments since i and everyone eventually discovers, whether you have chronic illness or not, that one person, one friend, even one spouse, cannot be all things to us and all the things a person needs to feel secure, vindicated, satisfied, comfortable, connected and so on. So friend X is great for hearing complaints because she has alot of empathy but is not histrionic, brother Y is great when i need advice on cars or feel like gushing over his new kitten, cousin Z is great when i want to take a few moments to forget it all and resconstruct the family tree for fun, discussion forum Q is great when I need people who REALLY get it.

but one thing super notable to me in your message is what you quote above. that it's only your husband and your daugher. I can't help to give my perspective on that in hopes it may help a bit. Since youre so steeped in it, and take it for granted, do you realize that to others do you know how amazing it is that you HAVE a husband and daughter and they ahve stuck by you? now of course, there's someone out there who will find it amazing and enviable that i have a emphathetic friend X and a entertaining brother Y and so on - very hard to compare apples an oranges. So i find what works is to ditch the comparison and just think alot about how glad and cool it is for the things you do have. Doesn't mean you can't want more, nor look for more, but it helps alot to not feel like something is missing, and not to feel lonely or bad. so if it were me, i think every day i'd think it is so cool i have this husband. and so cool i have this daugher.

incidentally, i've made a couople of genuine friends , one very good friend, from email alone since being sick (who are also sick), so i think that's huge.

ok, i'll stop rambling. these things are so important and so hard to put into words. When my mother died, O lost alot of friends too and that had nothing to do with chronic illness. sometimes in times of deepest needs w unfortunately have to see that what appeared to be permanant social structures really were not and they have to change with the changing needs and demands.  (with illness by the way, i find i lost all my friends who turn out to have been depressives! didn't bother me that they were depressives, but they appear to be the ones unable to handle my profound illness. brings them down or somesthing. plus i got very tiresome overexaggerated "oh i'm so sorry". i mean geez, give it a rest, i'm at deaths door every single day and that doesn't help- just talk matter of factly on the stuff i want to talk about...And with others you thought they were part of your Permanant Social Structure , you find out really they just liked having people they could invite to dinner parties, so those are gone when you can't go to dinner parties any more, and others are only friends if you live in the same town - everyone discovers these things, but with us of course we really push this to the max)

[dizzytizzy]

On 5/21/2018 at 12:01 PM, Lainy said:

Something that helps loneliness for me when I can't physically meet up with someone is social media (I know, I know - boo  ) But if you can find communities online with common interests to talk about it really helps. 

@Lainy I know, I know - I've really painted social media with a broad brush! Too broad, I think 🤔 This forum, for example, has been helpful in reminding me I'm not alone and that there are tons of other people who have had years/decades of "odd" health symptoms before finally getting this diagnosis. To compound the issue, I'm an introvert by nature and find that people, mostly just when in person or via the phone, can really drain my energy and leave me craving solitude. Then I go quiet and sometimes get too stuck in that mode for my own good. 

Edited June 9, 2018 by dizzytizzy
added member name

[dizzytizzy]

On 5/21/2018 at 5:49 PM, Pistol said:

Hi - I HEAR you!! I used to be a nurse, working, also mother of 1 daughter, wife. I did it all, always did. When I developed POTS at 42 all of a sudden it all stopped. Now - 8 years later - I am disabled, mostly housebound, unable to drive ( seizures ) and went through periods of grief, depression. I did feel alone when I could not get anyone to understand the reality of my symptoms.  

YOU ARE NOT ALONE!!! Many of us are in the same boat. --- I had a hard time adjusting to being less "useful", but now I have learned to appreciate the ability to do what I can for my family, even if that is only cooking or sometimes cleaning or other minor housework. 

Do not feel alone, you are experiencing what many dysautonomia patients go through. Be brave - write to me or other forum members if you feel not understood. We DO understand!!!

@Pistol Yes! Same here. I was total type A, do it all kind of person. Working, cooking, helping friends/family, volunteering, parenting, etc. I'm still type A (in my mind at least!), but right now my body doesn't allow me to do everything I want to.  While I think my husband and parents and maybe one close friend understand where I'm coming from, they seem to get somewhat uncomfortable when I discuss dysautonomia. I think they just don't really know what to say or do to help and that is tough for them. 

I do have to learn to adapt and appreciate this new for me normal. There is still much that I can do, as you alluded to, to still feel useful. And I may just take you up on the offer to reach out!

[dizzytizzy]

On 6/7/2018 at 11:54 AM, Weary said:

Since youre so steeped in it, and take it for granted, do you realize that to others do you know how amazing it is that you HAVE a husband and daughter and they ahve stuck by you? Doesn't mean you can't want more, nor look for more, but it helps alot to not feel like something is missing, and not to feel lonely or bad. so if it were me, i think every day i'd think it is so cool i have this husband. and so cool i have this daugher.

And with others you thought they were part of your Permanant Social Structure , you find out really they just liked having people they could invite to dinner parties, so those are gone when you can't go to dinner parties any more, and others are only friends if you live in the same town - everyone discovers these things, but with us of course we really push this to the max)

@Weary Thank you for jolting me out of my pity party! I mean it, truly 😍 It's easy to get stuck in a cycle of feeling sorry for myself, but yes, I am so, so grateful that my husband and daughter are here. I know they get frustrated sometimes by the wonkiness and unpredictability of this illness (as we all do!), but for better or worse, they're here. So thank you for that. 

I'm sorry to hear about your mother and the resulting loss of social structure. Your experience has been similar to mine as I have found many people dropped away when I could only stay connected via phone/email/text and couldn't go out and be social, attend parties, etc. And, honestly, there are times when I don't have the energy to initiate contact through a simple text. I do get jealous of how effortlessly it seems for some people to just pick up and go, run to the store, take their kids to the park. I didn't fully appreciate that when it was still an option for me - something I surely do regret now.