lizzie

Why won't anyone listen ?

17 posts in this topic

Having been brought up in the British tradition of "stiff upper lip" whose motto is what can't be cured must be endured, I'm not generally given to whining (except about the cold, which being weather related is perfectly acceptable to complain about if you are British). However for the last few days have been feeling pretty overwhelmed by life in general and SSc in particular. As well as a number of non-sclero related anxieties, I have a nasty mean bully of a work manager who ignores and sidelines me- she hasn't said so to me but I know from another source that she has said that she can't rely on me because of my illness (I have no more time of sick than anybody else). Yes, I know that I have a case under the disability discrimination act but for several reasons don't want to go down that route (at least not yet). All this I can cope with - friends are more than happy to let me bend their ear and offer sympathy, advice and support. What is really getting me down is the SSc. Despite the CellCept (which to be fair I have only been taking for nine weeks) I've had a sudden progression of the skin involvement - tightening feeling has now crept from just forearms to above the elbows, am itching , especially at night when I'm warm, my lower legs feel like they are shrink wrapped, and my mouth seems to have shrunk and look more lopsided every time I look in the mirror (which I do obsessively). I'm obviously feeling a bit disconcerted about all this and just like my other problems, want to talk about it. The trouble is that the minute I try and voice my concerns to friends, they immediately start to reassure me that it is not happening, that everything is OK. I know they just want to make me feel better, but it is very frustrating. All I want someone to do is listen, nod a bit , and say something along the lines of "it must be worrying for you ", to just to acknowledge the reality of the situation as it appears to me. I'm sure others here probably experience the same thing .

Phew, feel better for that rant.

Lizzie

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Hello Lizzie

 

I had a manager who tried to bully me, as she did everyone else, a number of years ago before I was ill. It's so hard to deal with daily and even harder to confront which I did officially. Use all weapons in your arsenal and if that means envoking DDA do it, level the playing field. We forget that most of our days are spent at work so when much of that time is negatively impacted by the behaviour of another it's a big deal :angry:

 

What's with other people saying this/that is no worse or has improved when you know quite well it has not?! Please tell me my skin colour has improved and coo. I still can't use my hands properly but hey their colour...

 

People try to diffuse what you're saying to lessen it's impact without realising they can't. My mum keeps telling my sister her bald spots (follicular lupus) aren't noticable yet she now requires hairpieces to cover them, no amount of strategic brushing and hairspray will now suffice.

 

It's like the emperor's new clothes...my skin colour, the bald spots, your skin tightening...people see something that's not there.

 

Lizzie your skin tightening is progressing but the cellcept can begin to interrupt this process but it can take 3 months before it kicks in. As you know people's mouths can get smaller and their faces can be effected. I think the cellcept has prevented this from happening to me so may help you also.

 

See how the hot then itchy develops as I realised I had erythromelalgia because I was more itchy when hot and more hot than a sclero sufferer with raynauds should be.

 

By the way there's something wrong with you as a result of which you have a battery of symptoms some visible some not, some progressing some not.

 

Amanda :)


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lizzie

 

I echo Shelley...also know how you feel....and fully understand how the uncertainty breeds the fear within. Take care my friend...ranting always makes me feel better somehow too! ;)


Sending good wishes your way!

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Lizzie,

Rant away! We're here hear your rant and nod, agree - been there done that. We've all had at least one or two posted rants ourselves. Your ranting is justified.

 

Big, big hugs to you Darlin'


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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People just don't know what to say. We just want a listening ear, and not advice or whatever else they come up with. I hate it when they say: <_<

 

#1-it can't be as bad as all that, stiff upper lip now.

#2-we all have our crosses to bear.

#3-I know what you mean, I have this terrible cold...

#4-I think you look great!

#5-You worry too much.

#6-I'm sure you will be fine.

#7-that isn't true in your case, I just know it.

#8-maybe if you sleep more/take vitamin C/keep busy...

 

:blink:

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lizzie,

 

I hear you too and understand. I have ranted here at the forum, probably more than a couple of times. SSc is really nasty.

 

With gentle thoughts.

 

Judy


A happy heart is good medicine.

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Hi Lizzie,

 

From a purely British perspective, I totally understand. I stiff-upper-lip it until everything has got on top of me and then suddenly burst, probably scaring my friends and family. I also try and make the best of everything, so a lot of my friends and family don't even understand how serious scleroderma can be.

 

My mouth is tiny now, it annoys me so badly when I point it out to people and they say exactly that because they feel so awkward when faced with an undeniable truth. I've had people say to me that I'm bound to look different now than I do in photos because I'm getting older - err, I don't see your mouths shrinking to nothing and a disturbing (although good in a way) lack of wrinkles when I compare you to your photos!! Maybe it's a problem with having British friends, they too are stiff-upper-lipping it ;-)

 

People want to make things better for us, which is sweet, but I am desperate sometimes to have someone say "I can't imagine how you feel" and to just listen and nod. We run out of steam naturally then and move on to something more cheery to talk about (not the weather, obviously!).

 

B x


Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

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Hi Lizzie

 

You are allowed to have a rant when ever you feel the need. I think we all feel like that at times and yes it would be nice to occasionally have people recognise that there is a problem and accept that it is worrying for you.

 

Take Care

 

Jensue

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Dear all thanks for listening. I think I have now gained some equilibrium :)

Lizzie

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Lizzie,

 

It's okay to rant regardless of your stiff upper lip upbringing. We all have experienced feeling like we have to grin and bear it. Your boss sounds like she could use a lesson in compassion. Just one day in our shoes would change her tune. But I wouldn't wish that on anyone, not even a bad boss. I think the people that really hear us and understand us are right here. You can say how you feel and we know what you mean. Other people might think Oh she's feeling pain but it can't be that bad. Or, sometimes they don't know what to say. Like you say, a simple nod or is there something I could do for you would be nice.

 

I know what you mean and understand how you feel. I hope you find something for the itching and the skin progression lets down. May you feel better with each passing day.

 

You're in my thoughts,

Razz


Live well, Laugh often, Love much

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I'm surprised no one has mentioned being told that they are "lucky" to have Sclero since it keeps the skin from wrinkling.

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Thanks for the thoughts Razz.

 

Wohali and Amanda -I have actually had someone say that I was lucky to have all that lovely collagen to keep me wrinkle free (she was sort of joking- I think!).

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