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Upset, not sure if I am right

upset personal support pain support

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#1 quiltfairy

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Posted 19 May 2015 - 03:51 PM

I have a peer support person who comes to my home. She is there to help me through all of this. We got to talking about pain and how I wish there was a pain support group in this area.

 

She piped up and said, oh you have pain like me, my back really hurts today. So i questioned her a little further on the issue. She was going to her chiropractor and her back would be just fine in a couple of days.

 

I asked her than if she had scleroderma and she said no. I asked her if she had any symptoms of any autoimmune  disease and she said no. I also asked her if she had cancer, she said no. I said why then are you making this a competition about who has the most pain?

 

I was so hurt by this person who is supposed to be a professional. I am thinking of calling her office and declining any more visits from her.  I don't know. I might

 be overreacting, but then again today has been a bad day. There is a storm front going through which means it is a pain day.

 

i would appreciate any response to help me out. Thank you.



#2 Shelley Ensz

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Posted 19 May 2015 - 04:29 PM

Hi Quiltfairy,

 

First of all, I'm very sorry that you are feeling upset, and I hope that you can somehow mentally make your peace with this soon. I'm glad you turned to us, to help you think things over.

 

Secondly, I've never heard of a peer support person before. I don't know what they are, how you get one, or what they are supposed to do. To me, "peer" usually means someone in pretty much the same boat; someone in a similar situation. But she sounds pretty healthy. So where does the "peer" come in, and in what way is she supposed to be helping you?

 

Probably the closest you're going to come to "peer support" is right here in the forums, and even then, most of us are going to misfire and say things wrong while trying to offer support and a comforting shoulder. I would expect that a trained professional though (if indeed this is what she is) should probably usually have a little bit more wisdom or training when it comes to something like this.

 

I think she was trying to be empathetic. It doesn't sound like she was intending to be mean or hurtful to you.  If she was purposefully saying mean things intending to make you feel bad, then I would definitely recommend that you report her. And, of course, I don't know what her role is, her training, how you came about getting her/their services, etc.

 

As you probably know, I've experienced a lot of losses of immediate family members in the past few years. I found that my hurt and grief made me more sensitive than usual.  Many people made sincere efforts to comfort me with using some of the most insensitive references, or at least, they seemed insensitive to me.  At first I was reeling by what some people said. Then I realized I had to quickly get my footing with it, because likely such sort of comments were going to continue, maybe for years.

 

What I did was I adopted a slogan, "Listen to the music, not the words."  I tried to get in touch with the underlying emotion people were trying to express, such as sympathy, empathy, love, or just letting me know they cared. Nobody was trying to be mean or hurtful or upsetting to me; it was just me interpreting it that way. I could have just as easily tuned out their words, listened to the music of their intention to care, felt comforted by that thought, and stayed on my healing path. I must say, even some "trained professionals" like doctors and nurses and social workers said some things that I didn't like.

 

And oh the poor innocent people caught in my path when worse came to worse!  One poor nurse, caught in the tsnunami of my grief, exclaimed, "Oh, you must be strong!". I shut her up on that score, probably preventing her from ever ordering any other suddenly grief stricken person to be "strong", by saying, "NO! My goal is not to be strong -- it is to be flexible and resilient!"

 

I really surprised myself, as I seldom have the right words at the right time. I always think of them the next day, or the next week if I mull it over long enough. So I'm very impressed that you had the presence of mind to confront her. I'm pretty sure she saw the error of her ways by the time you were done with her!  However, I still rather doubt she'll change unless she is given specific training and practice in how to respond differently, simply because she's human, too, and we all tend to shoot from the hip when we don't have a good script to follow.

 

You're "right" in that, you have every "right" to be upset by anything that anyone ever says or does. But being "right" doesn't always mean there are necessary actions or retribution to make. I tend to think you've already settled the score.  But, I may be wrong, I often am, and so I'm very eager to hear what you and others have to say on the subject.

 

Still and all, likely there will be a zillion times in your life when you can keep your spirits intact, and not let others get you down, by listening to the music, not the words.

 

And especially, if I've said anything wrong in this explanation, or any others anywhere on the forums ever, I hope that others listen to my music -- I care! -- and not my words, especially if the music is more soothing.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 19 May 2015 - 11:38 PM

Hi Quiltfairy,

 

I've never heard of a "peer support" person, either;  in the UK, in my experience, the system favours a do it yourself approach. Certainly after my recent hip operation it was very much a question of handing out a booklet with the exercises and instructions for aftercare with a cheery "Off you go, ducky......see you in six weeks for a check up!"  and although there was a "support nurse" who rang me two days running after I went home, she wasn't actually much use.

 

I can understand how upset you felt and like Shelley, I'm impressed with your quick wittedness to be able to give a sharp retort at the time. I think Shelley's right; your "support person" probably didn't mean to be unkind, she just wanted to try and empathise with pain suffering and was a little clumsy in her choice of words. I have a friend who is the kindest soul in the world; she would give you the shirt off her back (even if you didn't particularly want it!! :wink: ) but she is perhaps not the most sensitive person at times. When I returned home after my hip operation and basically felt like death, she was constantly texting me and ringing me up wanting to help me, when really I just wanted to be left alone to recover quietly. That sounds awful, I know; but I found it more stressful to have her constantly offering me things, rather than waiting until I was in a better position to appreciate them. But, she meant it kindly, I know this and so it was very difficult to keep fielding her, especially as I really didn't feel up to it.  

 

I also tend to find that people like to tell you of their experiences, perhaps not as a competition, but as a means of trying to empathise. It is difficult to find the right words to comfort a friend in distress, without sounding trite and insincere; I have said something like "I'm so very sorry, I'm afraid I don't know what to say to you", so that they know you do care.

 

One of the joys of these forums is that you are amongst friends who, having experienced Scleroderma first hand, can understand how you feel. I do hope that thought will comfort you and help you to overcome your feelings of distress.

 

:hug-group:

 

Best wishes,


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#4 miocean

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Posted 20 May 2015 - 02:56 AM

Dear quiltfairy,

 

I am so sorry you are in so much pain. I agree with Shelley, that some people are trying to empathize, not make it a competition. I have been guilty of that myself. Of course, there are those who feel they can top whatever you've been through with their own experience and I guess you will have to try to determine which category your peer support person falls into.

 

My feelings are that pain is pain and illness is illness. I've had friends say to me they weren't feeling well and then apologize and say they know it is nothing compared to what I've been going through. I tell them that when you feel bad you feel bad, it doesn't matter if it is a chronic illness like scleroderma or a common cold. Yes, they will probably get over the cold in a couple of days and I will always be dealing with scleroderma but at the very moment they feel like I feel a lot of the time. During my recent hospitalization with extreme dehydration from diarrhea I had a friend tell me to eat bananas. I wish it was that easy. However, this same friend has had breast cancer and a mastectomy so I know in her heart she meant well.

 

I believe in second chances so I would meet with the peer counselor again and discuss the last session. Find out if based on the way you feel you will be able to work together in the future and if not, ask for a different person. I never heard of a peer counselor either and am interested in learning how you were able to get one.

 

Best of luck and may you have a relatively pain free day.

 

miocean


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#5 Shelley Ensz

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Posted 22 May 2015 - 05:07 PM

Quiltfairy, as you can tell we are all fascinated by the idea of a peer support person, so please let us know what they are, what they are supposed to do and how we can all get one.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 quiltfairy

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Posted 23 May 2015 - 03:40 PM

Peer support is through mental health; my therapist assigned her to me and she is to listen and help as I need her. She can help get me to doctor appointments; the thing I really enjoy is when it is nice out we take the dogs for a walk.I did talk to my therapist about her and what was said and he replied that it is something he will have to include in teaching her and other peer support specialists.

All I know about the program it was piloted in Nebraska and is in Iowa but any further than that I do not know; I will check further into on the internet and let everyone know more.

#7 Joelf

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Posted 26 May 2015 - 05:52 AM

Hi Quiltfairy,

 

I've added some information and a couple of links on Peer Support to our Patient Support Programs webpage.

 

Kind regards,


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#8 Amanda Thorpe

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Posted 03 June 2015 - 01:27 AM

Hello Quiltfairy

 

Sorry I have just come to this thread and what a good one. I reckon most people say what they say with good motives, wanting to express the appropriate whatever the situation demands. Of course there will be spectacular fails!

 

Shelley's right as usual, if you feel it, it's valid (unless subject to mental/emotional illness then maybe not) but it doesn't have to be acted upon. Having said that, you did act upon it, challenging it right then and there. Fantastic! Often by the time we've thought the appropriate reply the conversation has moved on and then our only recourse is to replay it in our heads at a later date.

 

There are however some people who do compete with you when it comes to who's the illest, most in pain, most likely to circle the drain. As it happens I have one in my family. They only ask how I am in order to open the door so they can rush in and talk about themselves. The shame of it is I now avoid not only responding to their enquiries but making any of my own about them. Even though I have explicitly discussed the situation with them they choose to continue the behaviour.

 

At 47 years of age, if I don't want to keep repeating the same behaviour, getting the same outcome and then being disappointed by it, I have to do something differently.

 

Take care.


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#9 quiltfairy

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Posted 03 June 2015 - 11:55 AM

Amanda, I was at that point with my mother a few years ago. It got down to knock down drag out arguments at one point. I decided things had to change and I knew it was not going to be my mother who was in her late 70's at the time. So I stopped arguing if she tried to start one. I simply got up and left. Now all the family has learned that I will not argue. I will simply leave. It has made things much better at my parents when I am there. There are no more holiday arguments, no more competition about who is the sickest or who has had the worse  life.  I just excuse myself and leave. Maybe you will have to do this with your family member.

 

It was hard to do at first because nobody understood what I was doing, then they figured it out.

 

Good luck with your family.



#10 Amanda Thorpe

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Posted 08 June 2015 - 08:40 AM

Good idea, Quiltfairy, very good idea. I'm afraid it has to be what works for us which is not about selfish, it's about survival.

 

Long may the peace hold!

 

Take care and thank you for starting this thread.


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#11 Trinity

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Posted 18 June 2015 - 08:36 PM

Hi Quiltfairy,

I only recently learned about peer support when my counselor suggested I might be interested in doing it. I didn't do the training, but I imagine if I was eligible this means these people have been sick in some way themselves, but have done well in their own recovery so they want to help encourage others in theirs. I think it's natural for people to try and find some way to relate. Unfortunately this sometimes comes out wrong.

I have actually had the opposite statements upset me. I constantly hear "I start to feel bad about what's going on in my life, but then I think about you and feel so much better." I have been told by so many different people that my life is so horrible it robs other people of the right to complain. When I finally met with other women who were diagnosed with scleroderma I thought I wouldn't have to go through it again, but after hearing my circumstances sure enough one of the women said it, and their story was bad! It can be very frustrating and depressing to keep hearing this, but I try to find the positive. I know most mean it as a compliment, because I have not given up. I still asked those close to me to find better wording. I also told them please complain! I mean within reason. Pain is subjective. I can survive days of killer pain with scleroderma and call it normal, but get a migraine of tooth ache and be flattened. The shock of a different kind of pain bypasses all my built up tolerance. If it is a problem to them I accept that and support them,even if I'd pay money to trade places. For a long time I felt differently and I admit a professional doing that would probably still annoy me, but it's been a helpful perspective, especially when dealing with the ignorant.

#12 quiltfairy

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Posted 20 June 2015 - 08:05 AM

There are many ignorant people in this world.

People state how sorry they are for me; I simply tell them, don't feel sorry for me, I don't need pity. I need support without pity, I need encouragement to continue to do what I need to do, that is all I need and then I give them this website so they can truly understand if they want to.

#13 Amanda Thorpe

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Posted 26 June 2015 - 01:37 AM

Been there, done that, wearin' the T-shirt, figuratively speaking. From how many people and how many times have I heard that, whatever someone else is going through is NOTHING, yes that's NOTHING compared to what I am going through? More times that I can count, that's how many! However, it's usually from someone I know and they do it because they don't know what else to do. What they don't want is to become someone with a headache complaining about the pain in their head to someone with a brain tumour and to be honest, I wouldn't like that either so they can be in a no win situation.

 

That said I tweaked a woman's foot with my powered wheelchair (from an onlooker, she saw me reversing and watched as my wheel came near her foot instead of moving) and in Oscar winning style, she told me not to apologise for it, after all, my life was just awful...dreadful...how do you even get out of bed...appalling! 

 

It's subjective. When I was at work and having difficulties with a member of staff that went on for two years, that was the worst thing ever. Now, in the light of scleroderma, very few things are but that's me not everyone else. I wonder how many of us thought that having a chronic illness, becoming disabled and so forth, would be the "worst thing ever" until it actually happened to us? If you'd told me when I was 30 years old that I would be in a wheelchair 9 years later, I would have been desperate and depressed. Now I actually am in a wheelchair and I'm neither.

 

Take care.


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#14 Amanda Thorpe

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Posted 26 June 2015 - 02:06 AM

Hello Trinity

 

I wanted to say welcome as I think I missed out on doing so thus far. 

 

I wanted to pick up and run with something you said, that something as seemingly innocuous as a migraine or toothache can "flatten" us because it's a really good point. I recently had a lumbar sympathetic block, one side only as I was concerned about the side effects, explaining to my consultant that although I could manage my present symptoms, anything extra would push me off the cliff. There's nothing in reserve. I wonder if we're too hard on ourselves at times. We manage to manage scleroderma so that we can live a good life despite its best efforts but that managing actually takes most, if not all, that we have. Throw in a migraine, toothache, flu  and we expect to bounce back like a healthy person. Not! Our baseline, as a wise woman recently reminded me, is sick not healthy. We bounce back from "scleroderma sick" plus, as in my recent case, "virus sick"  to just "scleroderma sick"  but not back to "healthy".

 

When we become ill, all of the focus is on the physical, what are my symptoms, how will they progress, what's the treatment, how will it work as we run the gauntlet of specialists, consultants, nurses and the like, with family/friends by our side. It's not usually until a long time in that we start to realise all the emotional and relational stuff, including how people now talk and relate to us, has changed. We ain't in Kansas no more Toto, you freeloading little flea bag, you're done!

 

Anyways, Trinity, I think that you have a terrible disease, a good life and a future full of possibilities!

 

Take care.


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#15 quiltfairy

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Posted 26 June 2015 - 01:40 PM

Hooray, Amanda -- nicely said!