Should I do a talk on FM/Unseen Disabilities?

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Should I do a talk on FM/Unseen Disabilities?

Postby Saffi » Tue Jun 24, 2014 10:24 am

Wasn't entirely sure which topic to put this in...

The opportunity has come up for me to volunteer to do a fifteen minute talk at a Skeptics group, and I was thinking of offering to do one on Fibromyalgia / Unseen Disabilities, to help raise awareness. The angle would have to be how people are skeptical of unseen disability sufferers - the looks you get for using a lift and hitting the Floor 1 button, parking in disabled bays when you're 25, and so forth.

Was wondering if any of you have anything YOU would like me to mention or bring up if I did do it, anecdotes and the like as well.

Saffi xx
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby cocobella » Tue Jun 24, 2014 10:53 am

Hi Saffi,

I have to say that this is a brilliant opportunity!!! You aren't in Scotland by any chance, because I would love to either come along to the talk or be a speaker myself lol.

What is the Skeptics group? Is it for all hidden disabilities or just fibro in particular? I think it would be amazing to do a talk on it and how it affects so many of our lives. Also, at varied ages. I am 27, and so far I am the youngest person I know in my support groups that has it (by about 16 years). So it is very difficult. Also, parking in disabled bays when you appear to be normal. We may be able to walk unaided that day, however we may be in excruciating pain, be exhausted, or even heavily medicated that day where we don't feel quite aware of our surroundings (obviously we used a chauffeur that day or it would be very dangerous to drive in such circumstances). There was also a good photo posted here recently which was titled "if you could see fibromyalgia". It looked horrendous, lots of bruising etc. Some times shock tactics work at some of these talks!!! They also get the listeners fully engaged.

It would also be good to mention the mental side of having a physical illness like ours. How we also grieve for our old lives, as some of us can look back to a time where we were physically healthy and happy. I certainly can, 4 years ago was when my life completed changed. Before this I was a carefree 22 year old loving life!!! This illness has affected me socially, physically, mentally, financially and in all aspects of my life - relationships, employment etc. I also feel that I have lost friends to this illness because they simply couldn't be bothered with me being ill any more, or cancelling on them, not being able to go on clubbing holidays with them or "keep up" with them. On a more positive note, I have made some amazing friends for life through this illness via the support groups I have gone to and it has really made a huge difference.

Good luck with your talk, and please let us all know how it goes. Or even get a video link up :-P

Coco x
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby Amybeth2 » Tue Jun 24, 2014 11:31 am

An amazing opportunity for I wouldn't know where to start!! I hope awareness of Fybro continues, I was recently diagnosed after many years of suffering and I had never heard of it before then. Good luck...and let us know how it goes...please post it on you tube :) xx
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby scoke » Tue Jun 24, 2014 12:11 pm

I think cocobella covered it pretty well. It's a great opportunity to put it out there. That picture or something like it would be good because, with the best will in the world people won't want to sit through a list of all our symptoms. The fibrofog is a huge problem for most of us and it's that that has caused me and many others to be unable to work - I was a primary school teacher - how could I teach if I sometimes forgot kids names, words, forgot what I was saying? Over-sensitivity too - recorders played in assembly - excruciatingly painful, sunshine coming in windows and reflecting off surfaces - not on to wear sunglasses so get a migraine instead? I feel isolated because of my over sensitivity to light, sound, smells as much as just feeling too tired or alienated from my old active friends and not just because of having to cancel. I struggle on the phone too - can't hold the receiver to my ear for long, can't concentrate on speaker phone Nd the noise from that hurts my ears. I can't write legibly any more do have to type or email - takes ages but I can check it. It would be great to explain all this - also mention that most sufferers see. To e been overachievers, fit, busy and successful people who miss their old lives - why would they. Are it up? Good luck, hope you do it and let us know how it went!
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby FluppyPuffy » Tue Jun 24, 2014 1:08 pm

If you able to do so, then go for it!!!!! With the suggestions already made, plus what is on the open forum, there are many examples to help illustrate the various problems we have come across which might be helpful.

In 15mins you won't be able to address every single issue we come across, so I would suggest looking at ones you have got, placing them in an order that makes sense to you, and seeing how many you can include with a bit of a practice run.

It will be interesting to hear what sort of feedback/reaction you have from those attending the talk.
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby *Lisa* » Tue Jun 24, 2014 1:14 pm

Good idea :-D

I was once told off for doodling (walking really slowly) in town!

It was very busy and my legs were really stiff and painfull so i could hardly walk. An older couple behind me couldnt get past me and then started to moan cause i was doodling and preventing them from getting on there way!! this was because i didnt have my stick with me.

Being laughed at when i was on the floor from a fall. They couldnt see that i had fallen due to my legs giving way from the weakness. Im sure if i had a sign over my head saying on here flat on the floor because of my condition they wouldnt have been laughing!

Getting nasty looks by passengers on the bus when i get on and use my free bus pass.

The shop assistant looking very puzzled when i cant get the words out of what i want behind the counter :crazy:

many more but cant remember :lol: :crazy:
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby Shellyq » Tue Jun 24, 2014 1:42 pm

You should definitely do a talk to raise awareness. Depending on the group of people you are talking to the angle and approach of your talk may need to be different. In my experience running a group and also being a speaker myself you have to be focused on what you are hoping to achieve, also be aware that even though I know how difficult this condition can be and people don't understand, deliver it in a way where they can identify because the worst thing is creating hostility and exclusivity surrounding FMS. Make them aware how common it is and be specific about fact and symptoms, diagnosis and lifestyle implications. Any help don't hesitate to contact me or see I'll post this in the forum too.
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby whoami » Tue Jun 24, 2014 2:41 pm

Saffi, I will thank you in advance for being a spokesperson on behalf of fibromyalgia sufferers. Thank you.

There are so many unknowns about fibro that add to the confusion and frustration, for both patients and the general public. It is so easy for the general public to judge us because on the days we do venture out we can look and act as fit as anyone out there. With fibro though that perception can change within minutes.

When I was diagnosed over 25 years ago, the Dr said to me I have good news and bad news. The good news...I know what is wrong with you. Bad are going to live a painfully long life. I burst out crying, hugged him and thanked him for believing me and the symptoms I presented to him. He seemed to have tears in his eyes. I learned afterwards that this Dr suffered from. Fibromyalgia. I was so lucky to have such a DR, most don't. It can take years, many Dr's. And many tests to diagnose fibromyalgia. There is no test available to confirm to patients , rather tests to rule out other illness.

It is important for others to realize that there is more to fibro than just pain. You know the symptoms. It is important for others to understand that because some of us are prescribed very strong and high doses of pain relief, mine being Fentanyl that we are not junkies, waiting for our next fix.

Those of us with fibro would gladly give up these awful symptoms,. I have been home for 25 years, not working, living on less and missing the interaction with others. We certainly would appreciate not to be considered lazy, unwilling and a hypochondriac.

Saffi, thanks again. I hope that you take the opportunity to educate people about fibromyalgia.

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Re: Should I do a talk on FM/Unseen Disabilities?

Postby ouchisme » Wed Jun 25, 2014 9:41 am

what a great way to champion all ouchies with education :woot: If you are able and passionate about how you feel and wanting to give people a proper insight into your daily life i think thats very commendable

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Re: Should I do a talk on FM/Unseen Disabilities?

Postby Tally1068 » Wed Jun 25, 2014 10:39 am

I'll add my support and best wishes. Please go for it and let us know how you get on. Oh that more people would understand the lack of quality of life and the isolation caused by these "hidden" illnesses.
You'll be doing a great service for all of us. :-D
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby Minniemum » Wed Jun 25, 2014 11:16 am

Wherever, whenever possible people need to be informed of the devastating effects of FMS. You can say more than you think in 15 mins, especially if you use visual aids, you can engage and grab their attention quicker.

Some sceptics may think you're over dramatic, so you need to have a very down to earth comment to justify the visual aid.

I hope it goes well for you
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby Katie Louise » Tue Jul 01, 2014 8:34 pm

What a great opportunity I've have been denied both a blue badge and pip from what two different people perceived to have seen in 2 20 minute discussions I get so fed up of people looking down at me as if I am lazy because I can't run around with my children you will have to let us know how it goes x
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Re: Should I do a talk on FM/Unseen Disabilities?

Postby denys » Wed Jul 02, 2014 7:19 pm

Brilliant opportunity hope it goes well for you :-D :-D :-D

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