flick 23/02/17
Last reply 11 months ago
TO TELL OR NOT TO TELL…..

I was diagnosed in December 2015 and it came as a big surprise, I just always thought I was clumsy and had the odd trapped nerve. Well now I know other wise. I have chosen not to share this with most of my friends, family and colleagues. I am now experiencing my first relapse and cant feel anything from the waist down. I have been working from home this week, but as of next week I will need to probably go off sick for the first time in 4 years. I digress, I don’t know whether to now make it public knowledge or to still hide behind the trapped nerve lie. Part of me thinks that I would have more support, rather than hiding, I am a very outgoing person but worry that I will be seen for my label rather than me… I know I’m me, but others !!!!

What did you do ????

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stumbler
12 months ago

It’s a difficult one, @flick , and deserves some thought.

There’s one major consideration. Once the genie is out of the bottle, you can’t put it back!


shazzyp
12 months ago

@flick
I must admit that I have found it easier to tell people as or when I felt it appropriate. I would hate people to feel sorry for me as I refuse to be or feel a “victim”. MS is not who I am, neither will it be the sum of my life. Family and friends have been great and I guess cut me a bit of slack when I need to stop or sit down for 10 mins to catch myself. Telling them has also meant more acceptance by myself for the limitations that MS has placed on me ie: not being able to walk for miles, getting tired at times and falling asleep for a cat nap. Go with your gut feeling and maybe just confide in a person close to you initially and see how it makes you feel. Good luck.


pipster
12 months ago

Firstly don’t tell work until you have got advice from a union.

Friends and family? I told those who I know would want to know and would care to know.

I start my treatment on Monday…Lemtrada. I can’t wait!

Go with you gut. Take your time.

I’ve set up a blog in preparation for my treatment. Feel free to read http://chooselifechooselemtrada.blogspot.co.uk


geordie57
12 months ago

Difficult one and everyone is so different! I was in exactly the same place as you last year! I had my first relapse and other than my husband! I had no-one. I had to tell a couple of friends as needed help walking kids to school. For me, a huge help but I still don’t tell those who are just people I know versus good friends. It’s a very personal decision. Good luck with what you choose. X


edmontonalberta
12 months ago

My friends & family all know – I have nothing to be ashamed of… I am the same person I was last week, last year, etc… If anyone has a problem, they know where the door is.

Not one has walked away!


avrilt
12 months ago

Hey @flick

I was diagnosed June 2015, I am a really open and honest kind of say it like it is person. I told people and things were fine at first but now if I was making the decision again I am not sure I would be so open. The more open you are with people I guess the more you can get hurt. So just think long and hard and prepare yourself for people to not react the way you might think. On a positive note it does allow you to see who your true friends are but it does still hurt when you realise who doesn’t care as much as you thought.

Take Care x


red-suzuki
12 months ago

Hiya @flick

As stumbler & all have said, Its not an easy one & I must admit telling those close to you has its +ve’s…..In my case had the folk not known, it would have been a real sod on recent relapse, all that knew were amazing, having all my issues at the time to put up with, rallied round without any questions….they were just there….I know the folk would be their regardless of the MS, but because of the the person they know, they know what you can can or can not do….unquestioning…… on recent weekend in Oxford…..involved the guys taking turns to push my wheelchair around the place, so I could join in. (B.T.W. we have done a weekend away now for 34 years)……The most I get now is ‘how was your week’ etc…..not the ‘oh you look well’ or ‘you look better’….etc….yeah, You do get to see who your true friends are….

All the best with the deciding & take care.

@Red Suzuki


cameron
12 months ago

If you feel worried, you’re very probably correct in your fears. I felt the same and my decision not to disclose was so right, as borne out by subsequent events. It’s the label of MS that (in my experience) feeds the nosy parkers and gossip-mongers. Apart from the few people at work who had to know I resorted to half-truths, which served me perfectly well and I worked full-time in a senior management post for five years post dx. Some of my phrases were: ‘I have an ongoing problem with my hip’; ‘it’s Iooking like it may be chronic’; ‘it’s complicated’; ‘it’s a waiting game’. As I read this, I’m aware of how wimpish this all sounds, but it was what I had to do at the time. My work environment was largely male, fiercely competitive and full of office gossip. White lies and prevarication can always be modified as the need arises ( I never had to add to my story, in fact)…….. but once the MS label is out, that’s it.


flick
12 months ago

Thanks everyone for the comments. I’m still awaiting my MRI and until then cant take any medication. After from home this week I have uncovered a further piece of work that needs time spent on it and have offered to do this at home so I will not be off sick as I thought. This allows me to keep up the front of trapped nerve, whilst still carrying out my job. Don’t know how long they will allow me to do this, I have an appointment with Occupational Health next week and hoping that they will agree to let me to continue to do this. It keeps my mind busy and I can have a nap when I feel like it, plus day time telly sucks !!!!

So glad I have found this site and had the confidence to talk at last. x


freya
11 months ago

@flick I know this is a very personal question and you have to do what feels right for you, but to give a slightly different perspective than many of the other replies: I decided to be completely open with my diagnosis and tell everyone. I wrote it on Facebook and told my closest family and friends in person or by text. For me this was a huge relief and has been a 100% positive experience. 5 months on I have not had any negative responses and have never regretted this decision. I was actually overwhelmed by the support I got even from people I don’t know very well. I have young children and told them too straight away as I didn’t want them to think it was anything secret or anything to be ashamed about. A few people were unsure how to react at first, and what it would mean, but now that I’ve largely recovered from my relapse I’m almost back to normal and have been able to show everyone that this doesn’t affect who I am. I’ve had to make slight adjustments to my work and expect to have to make more in the future, but as everyone knows I find they are far more supportive and understanding than when they thought it was something trivial. It means people are sympathetic if I struggle to meet deadlines etc.
The only thing that has been difficult has been dealing with all the well-meaning advice! (Stop eating dairy! Become a vegan! Do more exercise! Do less exercise! etc, etc).

The other benefit is that I don’t have to worry about who knows and whether friends would keep a secret. I hated the thought of people passing on information about my health without me knowing – this way there’s nothing to hide 🙂

I completely understand that this might not be the right answer for you but I think that being open about my illness has really helped me come to terms with it fully. Good luck anyway, I hope your Occupational Health team are understanding and helpful!


lucyh
11 months ago

Hi @flick, as far as I know, once you tell occupational health, it is considered (legally) that you have told work. This was great for me; I told Occ Health what was going on, and I wanted to keep it quiet within my dept. They agreed and explained to my dept. that I was covered under the Equality Act and gave some details, which could also suggest I have HIV/ME/Fibromyalgia and a few other things besides.

I simply did not want the sympathy of people around me, the sad eyes, the patronising stuff (well-intended as it all is). I was also under pressure, at first, to discuss my situation with a departmental manager (as my own manager has not spoken to me since he discovered I was ill). A manager is not a health care professional…how dare a company expect you to discuss your incontinence, weakness, depression, MS hug etc., with a person who is not qualified in health care, and might not even know what MS is!!

Take your time with this one. Or even pretend you’ve told people and sit with that for a few weeks. In that time, you might discover people to be super-sympathetic to someone else who has just disclosed a disability (great), or you might hear people complaining about someone who is ‘not pulling their weight’ due to illness. Keep an ear to the ground and yes, once it is out of the bottle it cannot go back in.

@freya has a great attitude to things if you are looking more towards that direction. Take care xxx


wnyeratheart
11 months ago

@flick – I understand your concern completely. You don’t want to be seen through the stigmatized lens of being looked at as though you are sick and not a healthy person. I worried about this too, big time after my diagnosis in 2012. What I did was tell only my most trusted friends and family members, and asked them to share with others on a limited basis. I also asked that it not be the main topic of conversation, and that I did not want to receive special treatment, sympathy, etc. Thus far everyone has respected those boundaries that I set 4 years ago, but sometimes you can put yourself in a lonely place if you want to vent about it. You have to go about it the way adults do with having only a limited number of “best friends”. You choose a select few people who you want to let in your world of MS and stick to that. I don’t tell the whole world about it because they do not need to know. Hope this helps 🙂 XOXO


rosiem
11 months ago

Hi @flick – it’s a tricky one. Like @freya I decided to be completely open. For me I discovered that many people were hugely uneducated about MS and this normally contributed to any poor responses I recieved. We can’t expect people to react in the way we want them to if we continue to keep the disease a secret. It does of course hugely depend on your office setup. I was worried about how telling people would affect my career and so only set about telling management to start with. I then made it public on Facebook while asking people to sponsor me for a half-marathon at the same time – worked a treat :)!! Telling work also means I’m protected under Irish law and that they must make reasonable accommodations for me – and they’ve been fantastic: time off for appts, allowing me to work from home full time after relapsing again last year and even now if I’m having a rough day I can just text my boss and work from home. I know that depends on your job of course and I’m lucky I can do the same job from home. My advice would be to tell your family and friends at least as you need the support and do think about telling your boss eventually as then your job can work with you on it. Yes, not everyone needs to know and it’s none of their business but I feel that being open about it with everyone has been a positive experience for me and by doing so it removes the stigma and it slowly educates people on what exactly MS is. This of course is just my experience and what’s worked for me – you need to go with your gut on it and take your time as you find your own way. Best of luck


flick
11 months ago

Thanks everyone for your comments it’s good to know what others have done. I have told my boss and just this week some of my colleagues. I have just started methyl prednisone today for 5 days so hopefully this will help. I work as an occupational therapy assistant in the community and have seen MS first hand although we really don’t see people with RRMS. So far my colleagues have been great but there are a few in work who I choose not to tell as they would “dine out” on this info. I have also told my 16 year olds guidance teacher as he was having a bit of. Melt down and I don’t want him blowing all his studies. They offered to let all his teachers know that his mum was unwell just now and watch for him losing focus which I am happy about. I am also starting to ask for help from others, which is a very hard thing to do and so far have been overwhelmed by my friends offers of taking the kids too and from activities. My hubby is home for four weeks next week and I am going off sick to give myself a break and hopefully let the steroids do their thing. X

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