Keeping your condition secret

All your fibromyalgia experiences, questions and answers.

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Keeping your condition secret

Postby carolad » Mon Jul 21, 2014 10:11 pm

I find it very hard to be open about my health problems. I try to conceal things so that people around me don't know about my issues. If anyone asks me what I did at the weekend, I make some general comment and change the subject because I don't want to tell them I spent half of it in bed. If I'm too tired or in too much pain to do anything, I'll won't say to anyone, I'll just go home to rest. I think this is the reason I find holidays quite stressful and tiring because I have to tell people I'm not up to doing something, I can't just slip off on my own without telling anyone how I feel.

I prefer it this way, I have always hated fuss and I don't want people to feel sorry for me or treat me any differently. I just wondered how common this was - do any of you do the same or am I just odd? :crazy:
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Re: Keeping your condition secret

Postby robbiecramp » Mon Jul 21, 2014 10:30 pm

totally agree with you I was diagnosed in January and now it's july have found a lot of things that have changed my life and I have even kept some things away from the doctor like how anxious I am how stressful I get how upset I know exactly how you feel and I don't tend to do a lot now and do exactly as you do stay in bed with the pain or manage with help from my dad who am staying with temporary to a chair downstairs.
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Re: Keeping your condition secret

Postby catscout » Mon Jul 21, 2014 10:36 pm

I wrote this one night, no you are not alone. x

After the long day is done

Home is there you have won

Step inside the door is closed

Relax the muscles and shed the woes

No more acting no more happy face

You can be yourself and slow the pace

No more pretending that you are okay

No more smiling and no more play

Time to rest, time to sigh

Time to lie down and time to cry

If people only knew

What is was like to be you

To be so tired to be in so much pain

To have no life it's such a shame

But tomorrow the smile will be back

And the game will go on till your head hits the sack

No-one can know, you can't let anyone in.

As that would show weakness and that is a sin.
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Re: Keeping your condition secret

Postby carolad » Mon Jul 21, 2014 10:43 pm

catscout wrote:I wrote this one night, no you are not alone. x

After the long day is done

Home is there you have won

Step inside the door is closed

Relax the muscles and shed the woes

No more acting no more happy face

You can be yourself and slow the pace

No more pretending that you are okay

No more smiling and no more play

Time to rest, time to sigh

Time to lie down and time to cry

If people only knew

What is was like to be you

To be so tired to be in so much pain

To have no life it's such a shame

But tomorrow the smile will be back

And the game will go on till your head hits the sack

No-one can know, you can't let anyone in.

As that would show weakness and that is a sin.


That is it EXACTLY! x
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Re: Keeping your condition secret

Postby FluppyPuffy » Mon Jul 21, 2014 10:52 pm

I used to do this in my early days, partly because I didn't want people to know, but also partly because I didn't want to know myself. I thought that if I ignored things for long enough, then they'd vanish and I'd be all OK again. It worked for a while, esp before the FM dx, but eventually it all became too much to carry on doing, and the inevitable crash and burn happened in spectacular style :facepalm: :facepalm: :facepalm:

It has taken me a long time to get to a point where I'm able to speak more openly about how I am when someone asks, and even now there are moments when I do revert to not saying very much, but they are a lot less frequent. What I actually say does depend on who I am with/speaking to, where I am etc and the impression I get from them, but if there has been some sort of happening relating to/involving Kevin, then I will say something.

This change in attitude/approach has probably come about due to the length of time Kevin has been with me, as well as the ways in which I have changed since living with Kevin and the things we have been thru together.
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Re: Keeping your condition secret

Postby Helencat » Tue Jul 22, 2014 3:31 am

I totally relate to this and know at least one other person who does. For me this is the worst thing. It is so difficult to actually explain to anyone and even if you do they don't normally understand at all. It's very draining trying to seem ok when you are not ok at all. The worst people are consistently happy types for whom everything has to be jolly and no complaints are allowed. I got really fed up when I wore bandages on my arms which from time to time become practically useless, the bandages help to get them back to normal. It happens to me all the time, but normally I only wear the bandages in secret as otherwise the endless questions become draining. What I find really odd is that sometimes I self harm, and have scars on my arms. Noone has EVER commented on this... though I would have thought it was more worrying than a bandage. People are so odd. Anyway, I made the mistake recently of telling someone I had an "ME type" illness. I didn't want to say what it was. I don't actually think it's anyone's business. They then started trying to tell me all about my illness and what I could and couldn't do... I was furious. So I won't be doing that again. I dont' think anyone who doesn't live with chronic pain, insomnia, anxiety and depression that is related to this can possibly understand. Saying I'm tired gets greeted with "Oh did you have late night?" the amount of times I've heard this would make me a very rich woman if I had a pound for every one. I struggle about and just have to do it. It's horrible. You are NOT alone. xxx
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Re: Keeping your condition secret

Postby charlotteerika » Tue Jul 22, 2014 9:17 am

Sometimes it is better to keep it secret. I do not mean bottling it up but not informing people of what you did or didn't do. This is because this condition is not truly understood and you get people telling you you might have something else! I had someone tell me I did not have Fibro (as diagnosed by my Rheumy) but I had 'Lyme Disease' instead! Or another person thought it was because I was harbouring traumatic emotions from my life when I was younger which I am 'not able to let go off'! Yes I had a major kidney operation when I was 14 years old which lasted 6 hours and all my back muscles were cut so that was major trauma but it was not all 'in my head'! I love how people become MD's all of a sudden when they find out your condition! :evil: They do not want to believe your diagnosis.

What you need to do is find people you can truly tell them anything without judgement. Be wary this does not always mean they are family or friends. I have 'found' friends who understand through support groups. I know that it is hard as it seems we have to live a lie and it sometimes seems we have to live in denial but if you can find at least one person who you can talk to, it helps.
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Re: Keeping your condition secret

Postby Theresa34 » Tue Jul 22, 2014 12:33 pm

I cant say I'm too bothered whether someone knows or not really :-)
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Keeping your condition secret

Postby carolad » Tue Jul 22, 2014 2:16 pm

Theresa34 wrote:I cant say I'm too bothered whether someone knows or not really :-)


Well no, I don't really care either, I'm not bothered if people find out I have fibromyalgia...but I just don't want to talk about it :) I think it is partly not knowing how to explain it to people, and partly because it is just so damn boring to talk about! Yes I'm tired, yes I'm in pain...but that is the same as it was yesterday and it will be the same tomorrow. It doesn't change so there seems little point in talking about it, I find it boring and I'm sure other people do too :)
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Re: Keeping your condition secret

Postby Theresa34 » Tue Jul 22, 2014 4:37 pm

I just say that I have widespread pain and I feel tired a lot. I get good days and not so good days. That's all that really needs to be said unless its someone close to you who actually wants to know more :-D
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Keeping your condition secret

Postby dee1066 » Tue Jul 22, 2014 7:39 pm

catscout wrote:I wrote this one night, no you are not alone.


After the long day is done

Home is there you have won

Step inside the door is closed

Relax the muscles and shed the woes

No more acting no more happy face

You can be yourself and slow the pace

No more pretending that you are okay

No more smiling and no more play

Time to rest, time to sigh

Time to lie down and time to cry

If people only knew

What is was like to be you

To be so tired to be in so much pain

To have no life it's such a shame

But tomorrow the smile will be back

And the game will go on till your head hits the sack

No-one can know, you can't let anyone in.

As that would show weakness and that is a sin.

this poem says it all
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Re: Keeping your condition secret

Postby mojito » Tue Jul 22, 2014 7:46 pm

It is hard and I too tend to keep it all to myself and generally under play how I am feeling. I try and keep positive but do feel like I am acting and the pretence can be very wearing. Have tried to explain but find people don't really want to know. So I keep smiling and telling people all the things I can do and keep the fear, anxieties about the future to myself.
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Re: Keeping your condition secret

Postby catscout » Tue Jul 22, 2014 8:01 pm

Glad you like my poem. :-)

Most people I know, know about my illness or know I have one.

I just say I'm fine thanks, as I think that people faze out or get bored and don't really want to know the details.

But if people do seem interested I like to get the word out about the illness and what it is.

Everyone thinks I'm fine most of the time as they only see me when I'm out shopping or on a good day when I can go out.

They of course don't see when I'm really in pain or upset or that it hurts when I walk. Even my mum didn't believe me until she looked online. We all know what it's like.

Good luck everybody.
xx
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Re: Keeping your condition secret

Postby Andyp » Tue Jul 22, 2014 10:36 pm

I have also avoided telling many people about my Fibromyalgia diagnosis, partly because I don't think it's any of their ******* business and also I don't think they "get it". I also use a walking stick for balance and I often feel people are looking and thinking "why is he using a walking stick". Of the people I have told, I've had mixed reactions.
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Re: Keeping your condition secret

Postby ..:: lisa ::.. » Wed Jul 23, 2014 11:11 am

I'm a little bit confused about this topic (and it not hard to confuse me ha!)

If you keep it secret what reason do you give for why you are the way you are?

I am on the brink of diagnosis but it's been quite obvious something is wrong with me, when I'm slurring words or staggering round like a drunk it can't be hidden and for 2 years I've been saying oh no one knows what's wrong... because no one HAS known, I would much rather be able to give people a name than have people think I'm drunk or a crack addict (yes some days I look like that!)

It sounds like for many of you it's because there's a stigma associated with fibro because people have no understanding of the condition....

The way I see it is this I happening to me and my body, it really is none of their business.

There'll be some people that go away and have a lil chat with google and try and find out about the condition and there are those that just don't believe in the condition at all just as there are medical people that don't and that's up to them.

People will always have an opinion on anything and everything, the key is to concentrate on yourself.

We shouldn't have to hide things or keep secrets.

I put on a face and battle through each day but that's because I know everyone (including myself) is sick of hearing me moan and groan, when I'm by myself I can relax because I don't have to use brain energy to concentrate.

A Dr told me that with little understood or unknown conditions people will make judgements, but way way back there was a condition that caused people to drink ridiculous amounts of fluids or to shake uncontrollably leading "bystanders" to think they were possessed turns out these conditions became diabetes and epilepsy.....

Times change and the only way they can is to raise awareness and be open about things..... who knows in 20 years time fibro and cfs will be just as accepted and understood as any of the mainstream illnesses....

Don't hide it, don't be embarrassed, we didn't cause it and we can't stop it.
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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