Hello Everyone, I’m Kirsten and I’ve just joined the forum. I was diagnosed with RRMS in December 2021 after over a decade of rheumatology referrals, tests, all kinds of symptoms and diagnoses. I finally got referred to neurology last year.
I work FT from home and have been working far too much these last few months (sometimes 7 days a week) whilst also starting treatment and dealing with side effects, pain, fatigue and on-going numbness on my right which impacts my gait. The only way I managed to get through it was to switch off notifications on my phone and hide from messaging apps - I receive a ton of messages and I was (still am), just too overwhelmed to deal with them all. So I know people (including some friends) will expect and deserve an explanation.
So, I’ve not told many people about my MS diagnosis yet, but as a patient advocate and health research champion/volunteer, I want to use MS Awareness Week to ‘come out of my MS closet’.
Consider who you are telling, some will be fine but others might not, so just give it some thought. For those “acquaintances / colleagues / clients” on social media, you can just say that there are some technology issues.
For important people, or people you care about (which might also include some colleagues /clients), I would develop a simple and honest narrative. Explain that you have a condition and the consequences for you are : A B C
So the consequences for them might be : X Y Z
PS also consider how the news might affect your business or employment before you explain
good luck
Mick
Hi Kirsten, like mw, you waited a long time for your diagnosis…22 years for me!
Telling people you have MS isnt the kind of thing you’d text someone about.
I think I do just one or two at a time, as it will be a long conversation…people will have questions naturally.
It all depends if and where it fits into a conversation.
I shared with my boss right away, because things were bad enough that I was quitting work that day. I told her it was because I had MS, she asked what that meant specifically, and I gave her the simplest answer: it is a degenerative neurological disorder and that my neurologist expected me to be permanently in a wheelchair within a couple years.
With acquaintances and friends, I only brought it up to explain my recent actions. “I have MS, and sometimes I have trouble walking and get tired very easily.” If they ask questions, I answer, but most people already have a slight grasp of the situation.
If I was still able to work, I would limit the number of people I told and just keep it vague. Your professional contacts only need to know that you’re having some ongoing health issues that may affect your availability at times but not your actual work. “It’s not terminal, but thank you for your concern.”
My mother and kids are really the only ones who’ve gotten the full story, and that’s because they’ve been with me through the years of waiting for a diagnosis. I have no problem sharing the details with anyone who asks, stranger or not, but very few have done that.
You don’t want to make too big a deal out of it or you’re going to wind up smothered by attention that you don’t want.
Hello hope you are doing okay - number one is not to overwork, keep yourself busy if you can manage it - but you definitely need to cap the hours. Personally I work 4 days a week and make sure I rest the other 3 days.
I only told my GF, my brother was with me when I got diagnosed but he asked the neurologist was he sure the MRI was correct as I seemed fine from the outside. My mother doesn’t want to accept that I have MS - I think as the RRMS comes and goes, people forget I have a health condition - I have tried to explain to my daughter what RRMS is and how it affects my body.
Hi Mick, many thanks for the response and I’m so sorry for the delay! I completely failed to blog during MS Awareness Week, so it’s still on the never ending list of ‘to do’s’…
Previously, I was really worried about sharing another diagnosis publicly, I considered the impact on my career and how others would treat me. I got out of my comfort zone and did it anyway. And it was really uncomfortable but I don’t regret it. In many ways it was also a relief; blogging can be cathartic and minimise the need to have multiple conversations when you’re already ‘running on empty’. Even though that resulted in some negative experiences (personal and professional) it’s also resulted in lots of positives.
The team I work with know about my MS. I’ve been transparent from the outset and have also been struggling with fatigue and side effects (which can be visible at times). I also wanted to create a safe environment for them to also share anything relating to their health and wellbeing too, especially if they need support/adjustments. I do however appreciate not all working environments feel safe to share that information and the risks with going public can be significant.
So my MS-closet door is open a little. I just haven’t found the words (or energy) yet to share more widely.
Thanks again, Mick, great advice and no doubt useful for any other newbies that come across this thread.
Hi Bouds, sorry for the delay! Wow, 22 years is a really long time to get a diagnosis. I’m sorry to hear that; it must have been one heck of a journey.
Indeed, it’s not an easy conversation to have via text and I think that’s why I’m finding it difficult because a lot of people I’m close with, live in other cities/countries and most of our conversations are by text and voice messaging. And not having told them yet also leaves me feeling guilty because I’ve been AWOL. I’ve just had to preserve energy for work.
Hello @NorasMom, thank you for sharing your experiences and sorry for my late reply. So far, I’ve taken a similar approach to you e.g. telling people I work with to explain to actions, side effects etc. in order for them to be prepared and make things feel less awkward.
Great point - I don’t want to end up smothered in attention or pity. I might just quietly blog about it and then share that with friends if they want to know more. Thanks again.
Hello @Tarka2022, I’m doing ok, thanks. Exhausted as usual! I hope you are doing well.
I’m struggling to get off the hamster wheel. I know I should have a better work-life balance and focus more on my wellbeing. A 4 day week is definitely a desirable goal. I’m just not sure that’s an option right now.
I can completely relate to people forgetting you have a chronic health condition. I was diagnosed with fibromyalgia in 2013 and have been accused of faking my condition and my pain (which can’t be THAT bad!), etc… It doesn’t help that there isn’t a test for a fibro diagnosis either. So when I got my MS diagnosis, it was a relief because I finally have evidence!
A lot of people without lived experience of a debilitating chronic condition that can wax and wane, just find it really difficult to understand.
I’ve only told a select few people based on how much I personally interact with them. So close friends and family mainly and I tend to tell them when it feels organic, whether on text or in person.
When I do tell them I have tended to just blurt it out (no preamble or anything just “oh yeah, so I have MS now”) which then leads to a really nice conversation worth having (give them a sec to get over the shock tho). I have texted one friend and approached it the same way as telling people face to face, as me and her text a lot anyway and it probably would have been a few months wait to tell her if waited to do it in person.
So that’s the only advise I would give you; when you are ready just do it. Don’t be scared and do it in which ever way is most organic for you and how you would normally communicate with that person.
I hope you are doing well.
most important thing. Good to hear from you.