Last reply 1 year ago
Being A Secret MSer

Hi,

Even though i’m not very active on this website, from time to time this site gives me strength and a sense of community. So thank you all for that. 🙂

I’ve had MS for 2 years now and i try to hide the symptoms as much as i can because i don’t feel comfortable talking with others about it.
It took me 1 year to tell my mom.

Last year i resumed studying and i’m currently working on my thesis. I’m taking it slow because history tells me, too much stress leads to relapse.
However in the last two weeks many plans including my thesis are breaking down and stress is increasing at work and university.
This led to me making many mistakes and repeating them (Einsteins thoughts on insanity :P).

Now i think my supervisor is starting to notice my cognitive issues (memory&focus) because we started meeting on a weekly basis to discuss research papers.

I’m thinking about just telling him that i’m not lazy, stupid or not listening on purpose. However i don’t want any difference in our relationship, just some understanding.

I would like to hear your thoughts on that.

Do people you are in contact with know about your MS?
Are you generally open about your MS?
Or does only the closest circle know about your condition?

Thanks,
Mahdi

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freya
1 year ago

I am also a student and told my supervisor about my diagnosis straight away. I’ve found it enormously helpful because it means I don’t have to worry about progress being slow on days I’m not feeling well.
In my experience, people only treat you differently when they know you have MS if you act differently, or if you haven’t fully explained to them what it means or how it affects you. Talk to your supervisor, explain how it affects you, and the chances are he will be understanding. You can e.g. ask to record your meetings, or ask him to send you stuff by e-mail if it’s difficult to take in.

Are you based in the UK? You may also consider talking to your University’s disability unit as they may be able to offer some support either now or if you need it later, e.g. for an extension or if you have a relapse and need to suspend for a while. They have to be strictly confidential so won’t share it with anyone else if you don’t want them to. For example, the library sends me books in the post because I have a very long drive that wears me out. Depending on what sort of course you are doing and how it is funded, they may even be able to provide you with equipment to work from home – that’s what they did for me.

The help I’ve had from my University and supervisor have massively reduced the stress I’ve felt. Consider the future too; if you have exams or deadlines there will inevitably be stress that could make you worse. If they know about your diagnosis it is far, far easier to get extensions because of extenuating circumstances.

Obviously you have to do what feels right for you; personally I’ve been completely open about my diagnosis with everyone and it’s been a very positive experience.

F 🙂


tracyd
1 year ago

@cietux
I never really had a choice with being ‘out’ about MS, by a bizzare series of circumstance

I ended up in hospital after collapsing on a desk and shrieking in a meeting at work (Viral Meningitis, something went pop in my head, agony, emergency admission suspected brain haemoraghe / stroke, CT scan and MRI showed lesions)

Everyone knew there was something wrong with my brain (in addition to being a project manager and blonde)

They were so concerned that it never occoured to me not to tell them exactly what was going on, especially given that in comparison to the alternatives MS really was ‘The Bright Side’.

Since then they’ve witnessed the decline, when my eyes and legs were failing, and been fully updated about my Lemtrada treatment, they’ve seen the improvements and return to ‘normal’ (well as ‘normal’ as little old blonde, ditzy me ever be)

They read my blog, share it around and on occasion ask me to talk to their family and friends about my MS, my treatment, my positivity and general pig headed stubborness to let this shit get in the way of anything I want to do.

It’s more that me having MS is a ‘cool’ thing than an issue to be honest.

I’m not suggesting that would be that way for others, we’re all different as are those we interact with but it’s how my experience worked out.

I do tell new people that if they feel sorry for me, treat me differently, or baby me then I’m likely to kick their arse for it (although I might need a nap after to recover)

Good luck with however you play it.


cietux
1 year ago

@freya thanks for your suggestions, i’m based in Germany.

@tracyd you have a good sense of humor. ^^

You need to tell them like you say they have seen a change in you.
Tell people you have MS there is no need to hide it!


tracyd
1 year ago

@cietux

It certainly helps to have a sense of humour

My personal recipe is :
– Sense of humour
– A thick skin
– Big cahones
– A low tollerence for fuckwittery

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