Forum

Should I go massively public

Ok, bear with me on this one!

I was diagnosed back in November 2011 post injurying my back and losing the use of my right leg (they found out by accident when scanning my back). Up till then I enjoyed (and still do) running/cycling etc. so having got my use of the leg I thought I would raise money for MS Society in 2012 (£2600 raised). Throughout the ten sporting challenges I was and still am in contact with the local press but never actually saying I had MS, just coming back from an injury. This was not annominity (?sp) for me but I orginally asked my three teenagers and they did not want the questions at school so avoided the outright truth to the press.

Lots of people at work know I have MS and most forget I do have it as nothing really has changed in both my work load and hours (just do not do nights at all now).

Now the crunch of the situation: As it is MS awareness week and emailed our publicity officer to maybe place a little highlight of this on the front page of the Hospital’s intranet (they do this for other things). The email

“both as a supporter one of the charities and a sufferer I thought I would let you know that this week (29th April) is MS Awareness week. The condition may not be noticable but there are a number of people employed by XXXXXX who have it and work to the best of their abilities. It is thought that nationwide there are 100,000 of us.”

They contacted me back aware of the challenge I set myself last year but apparently not aware of my diagnosis (I thought they knew!). They asked if I wanted to take it to press as it would be a good story for the Hospital and for MS. As a stand alone ‘hey, it is MS Awareness week’ it apparently is not really an intranet front page. But if I allow it to go to press via my work it is a ‘hey it is MS Awareness week and the Hospital supports people who have MS. Sometimes you never know’ would do wonders for people with MS

I will have to ask my teenage children and SO if they are comfortable with the press, (there was enough locally last year with my challenge) but would you do it?

Answers/opinions please?

Just a thought, Vince,
Can you re-draft the story so that it starts with:

“Sometimes you never know … …”

And put that to your Intranet people. It really could be an Intranet front page story, and they might just get the idea that this is what you want (rather than a general item promoting the Hospital as well as MS).
And, it is your story, so you should have the say in how it is used.

Geoff

I think this sounds great and well done Vince for all your fundraising efforts - that is fab! I think that although it’s a bit of a pat on the back for your place of work, given my recent negative experience about my work place I think it’s good that they want to blow their own trumpet about their support for people they have working for them with MS - why shouldn’t they be held up as good role models for other employers that is providing they are good employers? My only word of caution would be to check with others if possible that they are good ie being flexible, providing reasonable adjustments and good access etc. to others. If they are doing that well, I say, good for them and good for you. Sounds like good publicity alround to me!

Hi Vince, I would say if your children are ok with it, and if you are willing to maybe answer questions from people stopping you in the street (which I suppose they might do), then you should go with it.

If you do decide to do it can I ask one little thing? Could you say that not all people with MS are able to work?

It’s just that sometimes when people read about someone with MS working, they think that all people with MS are capable of working… so adding that would be helpful to those of us who can’t work.

Good luck with it Vince!

If you do it, please come and put a link on here!

Pat x

Hi, update. The family of five have spoken. It was a no on a 3-2 majority! The no’s were more adamant!