lissaxox 26/01/18
Last reply 4 months ago
it's got me thinking…

I moved at the beginning of the month and I went to my local auto insurance broker to update my address on my license and the woman behind the counter asked, “Do you have any conditions that affect your ability to operate a motor vehicle?” Without thinking I said no, up until this point I had been entirely healthy (no surgeries, no hospitalization, no broken bones not even a cavity) and it was automatic but as I left the building it got me thinking. I knew that should I ever relapse and my ability to drive was affected my medical provider would notify my insurance provider but the whole thing got me thinking about disclosure.

My parents and siblings knew immediately, in part because I was initially told I had a brain tumour and there’s a big push to notify family to be there. It might be terrible to say but I almost wish I didn’t tell them right away. When I was in CIS limbo I would just talk about how I was feeling just to get it off my chest and they often would say, “You probably don’t have it, try not to stress.” It got really frustrating. It was frustrating because I was in a state of constant paranoia – I didn’t trust my mind or my body anymore. I was hyperaware and I could no longer tell if the things I was feeling were normal every day sensations I hadn’t taken notice of before, or relapse symptoms or all in my head and brought on by my intense period of constant health related anxiety. Every line of communication I would try to throw out there was cut with a simple reassurance. They just wanted to make me feel better but ended up making me feel worse. A couple months ago the entire left side of my body went numb for a couple weeks. I remember going to bed in tears – feeling like I had no control of my body anymore. That it didn’t matter how badly I wanted it, or how hard I was willing to work I couldn’t just “work it away” like I could rehab an injured muscle etc. I tried to express my fears and feelings and was met with. “I’m so sorry you’re going through this but I don’t know what to say.” (*I should note that I don’t blame anyone for how I felt and I am forever grateful for my family’s love and support. It was as difficult for me as it was for them and neither of us really knew how to help each other). I ended up developing a fear of telling people thinking they’d just feel sorry for me or their behaviour towards me and perceptions of me would change.

I’ve been on various MS society website and read up on disclosure which was incredibly helpful. For the longest while I had a huge fear about discussing MS – even while I was in CIS limbo – partly because I wasn’t sure what people were going to think. I didn’t want to tell my nearest and dearest friends because I knew them well enough to know if their behaviour around me was changing. Now that I’m more comfortable and better informed about MS I’m thinking more and more about disclosure outside your family and closest friends. Employers, coworkers, school(?) – the whole thing makes me nervous and I feel silly about feeling that way but it all feels rather strange.

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edmontonalberta
5 months ago

I read this the other day.

90% of people do not care about your problems. The other 10% are happy you are suffering through them.

With all due respect, take care of your self – ignore others…


stumbler
5 months ago

@lissaxox , MS is a new experience for you. Unfortunately, there’s not a lot of information about MS out in the real world, so the uninformed do feel uncomfortable. It’s down to you to educate them and direct their compassion into the right areas.

Just take it one day at a time and you’ll get there.

Here’s a brochure about telling (or not telling) others about your condition. It is UK-based, so some of it may be inappropriate, but the overall advice is sound :-

https://support.mstrust.org.uk/file/store-pdfs/Telling-people-WEB.pdf

Hopefully, one of our Canadian members can provide advice on who to advise regarding your driving licence, etc………. @melissa.g , can you help?


edmontonalberta
5 months ago

@lissaxox

I left Winnipeg 30+ years ago. Yet I still have friends there who I keep in touch with; will be seeing them in September.

If you need reasonable assistance in the meanwhile, ask. They will call you…


danirene1014
5 months ago

I was just diagnosed in October. I don’t have any insight, but I wanted to say I’m experiencing a lot of the same emotions and trains of thought as you.

I’ve been having a lot of issues telling people, mostly because they usually end up saying things that put me in a position to console them. I can do that to an extent, but I am still dealing with the diagnosis as well, and it is frustrating after having that same conversation with person after person. I’ve found it easier to tell people who know more about MS already (a few friends in the medical field) or I immediately start explaining what MS is before anyone gets to ask any questions. It seems like the more information they have, the less they are likely to misunderstand and start to treat me differently. After a few days of letting the information sink in for them, everything goes back to normal. I try to make jokes about it to ease the seriousness of the conversation.

My first major flare up happened and I was in the hospital, so the people I work for had to be told sort of immediately, but I have trouble telling my other coworkers who notice I’m not feeling that great. I live abroad, so it has made it difficult to tell friends from home who can’t see me, and I’ve just sort of stopped telling them until I see them in the summer. If you find any other strategies or a list of what legal entities need to know, I’d be grateful if you shared them with me.


cameron
5 months ago

Based on my own experiences with disclosure, my strong advice would be: wait till you think it might be OK – and then wait some more. The two occasions when I disclosed to people I thought I could trust ended badly. Looking back on it, I didn’t trust my own gut instincts which were telling me to hold back because I thought their support and discretion would help me in the workplace. When I got neither – and found myself being the subject of gossip I went into meltdown. The upset it caused me totally destroyed the protective shell I’d built round me to deal with the diagnosis. I’m rather better now at both disclosing and avoiding disclosure depending on who I’m dealing with. The other day someone I’d known slightly years back accosted me in the supermarket with the words ( – not ‘hello, how nice to see you’) ‘I saw you hobbling about, what’s wrong with you?’…. to which I replied, ‘Oh, I have a bad hip’. And mentally put them in the category of what my father used to call a TBA – to be avoided. I still live and learn. xx


mmhhpp
5 months ago

Dear @lissaxox,

Do not feel sorry about it I feel exactly the same as you do and I had MS for eight years now and what I have learned is not to share any of this with my parents ….. they do get too involved , they do not understand , they give the wrong advice ,
My father even told me he doesn’t want to come and see me because he feels really sorry about me struggling with the stairs … Guess what I can no longer go upstairs so he shouldn’t be sorry about it any more and time is ticking . I couldn’t believe it when I heard it .

I do not share it either with my husband because I noticed it was making him feel really bad so I keep it to myself or this blog . Sad but it works . I also have a friend who has MS and I do share with her a lot she is probably the only one who understands.

Tough when you feel so s… and even then you have to think off not hurting people around you. Really really tough but the works.xxx


mmhhpp
5 months ago

About the disclosure I did tell my friends because most of them are Scientists I couldn’t hide it . To be honest it did not make them better friends in any case they have disappeared but I guess life is a little bit like that even if you are healthy

With my children’s friends parents I didn’t say anything at the beginning because I did not want my children to be picked on but now they’re older and they do know about it I have no problem telling people if they ask . It has not change anything .

I guess you tell people when you are ready for it . I hate this sorrow feeling that some people gives you but they are trying their best i guess but I don’t like it .Xx


daybyday
5 months ago

My situation is different than many. My mother also has MS, so aside from my partner, and a couple of friends who were visiting and with me when my ON first became symptomatic, few people know yet. Having my mother to talk to has been valuable, and as a result, I’ve knew a lot about MS already. Oh, and my therapist knows, but I was already seeing her for a month before my diagnosis. But clearly, adding that experience was important to having already sought some help for other things.

I’m still figuring out how much and how to tell others. And if I should. Most of my family doesn’t know yet either. But it has only been a few months. I wanted to keep things very close until I made it through the early parts, scans, tests, stress, and my ON healing, and then until I began DMT.

Part of MS is the uncertainty, and I hope I have my mother’s good fortune in long remissions, but one just never knows, so the knowledge is that this can be a series of ongoing adjustments. So maybe the answer is now No, and maybe it could be different next year, but it’s important to live with that acceptance while still listening to your body and mind and continuing to live your life as best you can. Getting wrapped up in anxiety isn’t going to help, as natural as it is with uncertain conditions.


kelly83
5 months ago

I can relate to this 100% Im currently in limbo land. Do you mind me asking how long you were in limbo yourself?


miapi
5 months ago

@lissaxox
I do relate a lot to the paranoia of not knowing whether you have a new MS symptom or smth completely unrelated. : s
I’m also hyperaware and it sucks.

Regarding disclosure I m also still figuring it out, but I do try to avoid telling people if I don’t trust them too much, or if I don’t absolutely have to tell them.

Sometimes I go for ‘I have an autoimmune condition’ route.
Don’t know whether that’s better or worse than naming the condition.

But all in all, my stance is: if hiding it makes you feel stressed, better be open about it. At the same time stay aware of who you’re sharing it with, and try to predict how they are going to react.

For example, I share a house with some random housemates (unfortunately). I hadn’t told them for a while, but since I have my Copaxone in the common fridge, I had to tell them that I have a condition so they don’t end up throwing it away accidentally or smth like that.

I would say what works for me is always weighing the situation individually, and deciding. I don’t have a general policy so far.


edmontonalberta
5 months ago

@lissaxox @miapi @mmhhpp @daybyday

There is only one response. It is “I have MS but it is no big deal”…

Seriously – people are afraid of how this affects you & them. It does not on your side; except for physical challenges. You are the same person you were last week, last month, last year, etc… You still enjoy the same things, the things that pissed you off then – still do.

They may find it difficult dealing with physical changes – this is their problem; not yours. If they wander away, wish them the best in their life. You are better off without them.

We only live once (unless reincarnated as a butterfly). Enjoy it; find those who support you & keep them close to you. Life is a journey & we all have the same destination…


mmhhpp
5 months ago

Thanks @edmontonalberta good advise. That’s how I think. Xx


tootes
4 months ago

Just a quick point here. Does everyone know you have to inform the DVLA?

Nobody told me and I drove(yes I was safe to). It hasn’t affect my insurance premiums, and I have disclosed my MS, however my driving licence is now only valid for 3years, and needs to be updated and renewed every 3years currently.

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