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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Who to talk to?

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confetti11

Senior Member
Messages
279
Hello, I'm unfortunately in a backslide lately and have almost no one to talk to. I'm single and my mom and dad both died last year, and I've lost most of my friends over the years from the stress of chronic illness. I have a counselor but I can only afford so much of that and lately, I can tell she even tires of hearing about the stresses of chronic illness. I can tell that I physically feel better when I don't feel so alone, but I have no idea where to find someone to just talk to, cry to about how hard and painful this is. And scary. Are there any resources out there? I do better speaking to someone versus emailing or texting. Sometimes those modes of communication make me feel even more alone because I can't really express myself in real time. Thanks.
 
Shoshana

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
HI,
I am glad you asked us about your very important question.
That was a good, positive, big step to take, in itself.

I feel so similar to you, with the losses and the isolation,

but I am not good at talking , or at listening, in real time. I wish I was!
I would love to be there for you and for the give-and-take.

I am so sorry about the loss of your parents.
And yes, my friends also, dropped away.
It is excellent to have a counselor, but I agree, it doesn't take the place of every human contact.

I have just 2 ideas, at the moment.

There is some sort of support line that I know nothing about. But maybe might be a fit for you.
Hopefully someone will tell you the specifics on it.
Maybe @Diwi9 or someone else.
Maybe a moderator, such as @Sushi


Another option is, even if it is just sometimes, or in addition to something else,
you could find people on this website, who do understand and care,

and you could consider either starting a post, once in a while,
in the section called Members Only;General CFS/ME discussion.

OR , you could ask for some people who want to private message or email with you.

I know and understand, what you said, and that it is not the best for you,
but maybe helpful in addition to other supports/human contacts.

I think you are right, totally, that feeling alone only makes living with chronic illness worse.

Maybe a combination of every idea you can come up with, to combat that, would be little bits of help, that are significant.

I will be thinking of you.
Shoshana
 
C

charles shepherd

Senior Member
Messages
2,239
confetti11 said:
Hello, I'm unfortunately in a backslide lately and have almost no one to talk to. I'm single and my mom and dad both died last year, and I've lost most of my friends over the years from the stress of chronic illness. I have a counselor but I can only afford so much of that and lately, I can tell she even tires of hearing about the stresses of chronic illness. I can tell that I physically feel better when I don't feel so alone, but I have no idea where to find someone to just talk to, cry to about how hard and painful this is. And scary. Are there any resources out there? I do better speaking to someone versus emailing or texting. Sometimes those modes of communication make me feel even more alone because I can't really express myself in real time. Thanks.
Click to expand...

If you are in the UK, you might find it helpful to talk to one of our volunteers on the ME Connect information and support service

Our volunteers are all professionally trained and supervised and are very used to dealing with a range of emotional, practical and medical issues that face people with ME/CFS

They can also help to identify both local and national organisations that may be able to provide additional support

More information on our ME Connect service here on the MEA website:

http://www.meassociation.org.uk/information-and-support-line/meconnect/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
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confetti11

Senior Member
Messages
279
Thanks for all of your quick responses!

I didn't know there was a crisis link here...I would prefer not to call a suicide line and I think that's all I saw there? I'm not there yet. I just need a good friend that feels like family since I don't have any. I did find the Samaritans in my search. Good to hear they may be helpful. I didn't know about the resource in the UK (I'm in the US)...but I wonder if I can just add an international call plan to my cell phone and call there?
 
Shoshana

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
It would of course, take some time, to find the right person to match some personality and values,

And some time, perhaps for becoming friends/family.

But well worth trying!

I had a friend in U.K., years ago, and Samaritans were great, there, at that time,
but I am not aware that we have them in U.S..?
For those of us without a phone plan like tht one.

Sound like a real possibility, for you if you can get one of those.
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Basilico

Basilico

Florida
Messages
948
confetti11 said:
I have a counselor but I can only afford so much of that and lately, I can tell she even tires of hearing about the stresses of chronic illness. I can tell that I physically feel better when I don't feel so alone, but I have no idea where to find someone to just talk to, cry to about how hard and painful this is. And scary. Are there any resources out there?
Click to expand...

@confetti11, it sounds like your current counselor is someone you pay (since you mentioned not being able to afford too much of it). The point of going to a paid counselor/therapist is that you should not feel guilty for boring them...it's their job to help you express your anxiety, fear, to vent, to get things off your chest.

If you are feeling that she is tired of hearing about your problems, then that means she isn't doing her job. I think this is something you need to be honest about with her; tell her that lately you've been feeling that she's getting tired of listening to you, and that is a problem because it's preventing you from being able to discuss your fears and stresses honestly. Ask her if there's anyway to change this - she may not realize that she's making you feel this way and by discussing the issue, it may point out to her an area that she can improve upon.

If discussing this with her doesn't improve the situation, then I think you should find a new counselor who knows how to do their job. You don't deserve to be worried about how your problems are making your counselor feeling; keep in mind that you are paying her, not the other way around.

You have a serious chronic illness. Don't feel bad for needing to talk and cry about it.
 
Basilico

Basilico

Florida
Messages
948
Shoshana said:
I once had a counselor who practically fell asleep, while I was expressing myself.
It made me feel bad. I didn't realize, I should have told her (I thought it would be impolite to label what I saw and felt she was doing.)
Click to expand...

That is terrible! I'm so sorry that happened to you, @Shoshana . I think this is a really common problem for people who are really empathetic - we are so concerned about not wanting to make others feel bad, that we suffer in silence instead of standing up for ourselves.

Sometimes in the moment, it's hard to know what or how to say, but in restrospect it's more obvious that we should have said something. I'm trying to train myself to be more proactive, which is not easy, but does feel more normal as time goes on.

There are lots and lots of therapists, counselors, psychologists....and unfortunately many of them suck! And probably no one ever tells them that they need to improve, so they just keep getting worse...and as a result few people end up getting the help they need because of their bad experiences with these inept therapists.
 
C

confetti11

Senior Member
Messages
279
Basilico said:
@confetti11, it sounds like your current counselor is someone you pay (since you mentioned not being able to afford too much of it). The point of going to a paid counselor/therapist is that you should not feel guilty for boring them...it's their job to help you express your anxiety, fear, to vent, to get things off your chest.

If you are feeling that she is tired of hearing about your problems, then that means she isn't doing her job. I think this is something you need to be honest about with her; tell her that lately you've been feeling that she's getting tired of listening to you, and that is a problem because it's preventing you from being able to discuss your fears and stresses honestly. Ask her if there's anyway to change this - she may not realize that she's making you feel this way and by discussing the issue, it may point out to her an area that she can improve upon.

If discussing this with her doesn't improve the situation, then I think you should find a new counselor who knows how to do their job. You don't deserve to be worried about how your problems are making your counselor feeling; keep in mind that you are paying her, not the other way around.

You have a serious chronic illness. Don't feel bad for needing to talk and cry about it.
Click to expand...

Thanks. It's funny you elaborated on this. This counselor has actually been super helpful for a while. She's about the only person I know who shares similar beliefs as me and has gone out of her way to give me things that might help my health (her family has also had health issues).

If I'm going nuts from the isolation or struggle or sickness on a given day, I'll contact her and she almost always squeezes me in her schedule within 48 hours. And she'll talk to me by phone so I don't have to force myself to go out sick. A lot of what she does for me is just listen to me vent or express my frustrations about people I'm dealing with. Yesterday, she practically stopped me mid-sentence and said she didn't have any answers for me. Mind you, I wasn't really looking for answers, rather to vent and relate at least, but her tone changed when she said this. After that, she was sort of dismissive and then I just initiated hanging up. She knocked the wind out of me.
 
hellytheelephant

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
Just to say: you are dealing with so much: this illness AND two bereavements and you are taking the very mature approach of looking for help when you need it.

The Samaritans is not just a suicide line...it is for anyone needing a listener. They have been brilliant for me, when I just needed to talk things through and there was no one in my life that was available.

I agree with the previous comments about your counsellor- if you feel that you are burdening them then they are failing...Don't spend your money on someone who doesn't make you feel good. We have bereavement telephone counselling in uk- maybe that might also be helpful...
 
Basilico

Basilico

Florida
Messages
948
confetti11 said:
If I'm going nuts from the isolation or struggle or sickness on a given day, I'll contact her and she almost always squeezes me in her schedule within 48 hours. And she'll talk to me by phone so I don't have to force myself to go out sick. A lot of what she does for me is just listen to me vent or express my frustrations about people I'm dealing with. Yesterday, she practically stopped me mid-sentence and said she didn't have any answers for me. Mind you, I wasn't really looking for answers, rather to vent and relate at least, but her tone changed when she said this. After that, she was sort of dismissive and then I just initiated hanging up. She knocked the wind out of me.
Click to expand...

From my understanding, counselors aren't supposed to necessarily give answers; their jobs is to listen non-judgementally and give suggestions for how to deal with stresses and fears (though the talking in and of itself is a strategy for dealing with it).

Since this last response seems out of character for her because previously she'd always been very supportive, maybe you caught her at a bad moment when something was going on with her and she reacted poorly. Perhaps it wasn't a good time for her to talk to you, but she didn't want to leave you hanging, but also wasn't able to really be there in the right way.

I think that the next time you speak with her, you should still bring this up. Maybe tell her that you appreciate how she always tries to be available to talk with you but the last time felt uncomfortable, that she was dismissive of you. Hopefully, this was a one time thing.
 
C

confetti11

Senior Member
Messages
279
I'm going to try to run some errands, but I wanted to quickly thank EVERYONE for your responses. It's kind of you to help with your thoughts and inputs. I'll write more later...
 
J

Jennifer J

Senior Member
Messages
997
Location
Southern California
Hi, @confetti11. I'm so sorry to hear about the recent loss of your parents. Hug.

I understand wanting to have more voice to voice conversations for various reasons and the loneliness of not having that.

I'm foggy so bare with me. @Sushi's suggestion is good and other ones. You can also call 211. Not sure about privacy with calling them though and if it's recorded (you can ask and maybe ask that it not be). They are 24 hours a day.

I've called them a few times due to people having psychotic breaks from reality that I share long hallways with and restrooms in the building I live in. I found the person I spoke with very informed and helpful. I was very thankful that I was able to speak with this enlightened, compassionate and knowledgeable person.

Anyways, she told me I could call any time if I needed to talk to someone for any reason. I haven't but I knew a lady who called them frequently to have a shoulder to cry on. Draw back is it's probably hit or miss who you get but maybe if you find someone you really like you can find out when you can call to talk with them.

Also, not sure if there are colleges were you live. Some train psychologists and they may not charge for or charge as much to see them.

Are there any support groups or meetup groups in your area? If not for ME/CFS sometimes other support groups you can find support too. Such as Lupus, MS, Lyme, or various other groups. There might even be support groups for loss.

I hope you find someone you can talk with. If it works for you, do come here. I too long for voice to voice conversations and find it easier at times and quicker (it took me close to an hour to type this) and less lonely (even though talking exhausts me or I just can't), yet I find coming here does help so much and perhaps you can make some friends you can talk with. :hug:
 
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