When did you “come out”

[eventhis]

Hello friends. I was diagnosed about a year and a half ago. I still look and feel quite healthy, but had a new lesion on recent MRI, despite being on Copaxone. Very few people who know me know I have MS. But this new lesion has motivated me to clean up my diet, just in case that will make a difference. I’m doing Wahls for now, but I’m spending many hours every week consuming research about different diets and on lipid metabolism as it relates to MS. I digress. Eating the way I do now is inconvenient and difficult to explain to people. I have told a few more people about my MS, a few close friends. I still don’t want the world to know. I don’t want my employer to know, even though it wouldn’t be a problem. Are any of you currently (or previously) struggling with the conundrum of who to tell and when? By the way, thanks for being part of this community. I need this.

[Seasha]

Hi eventhis and welcome to MSWorld. Glad you reached out to us!

Many choose not to disclose right away when the symptoms are less noticeable. I remember telling others right away as I was so relieved to finally having a name for my myriad symptoms. Revealing your diagnosis is so individual.

You might be interested in reading this thread from others sharing their stories- https://www.msworld.org/forum/showth...c-for-February

I wish you wellness on your journey.

[KoKo]

Hello friends. I was diagnosed about a year and a half ago. I still look and feel quite healthy, but had a new lesion on recent MRI, despite being on Copaxone. Very few people who know me know I have MS. But this new lesion has motivated me to clean up my diet, just in case that will make a difference. I’m doing Wahls for now, but I’m spending many hours every week consuming research about different diets and on lipid metabolism as it relates to MS. I digress. Eating the way I do now is inconvenient and difficult to explain to people. I have told a few more people about my MS, a few close friends. I still don’t want the world to know. I don’t want my employer to know, even though it wouldn’t be a problem. Are any of you currently (or previously) struggling with the conundrum of who to tell and when? By the way, thanks for being part of this community. I need this.

Hi eventhis

Good for you, researching diets, and trying to find one that works to help you feel and function at your best.

I experimented over the years, and found that for me, a Mediterranean type diet seems to keep me feeling and functioning at my best. Of course we are all different, so what works for one doesn't necessarily work for everyone.

Regarding the disclosure of having MS, that wasn't an issue for me.

My initial symptoms were motor (gait disturbances, limping, hand dexterity, etc) and they were visible and couldn't be hidden.

In any case, good luck to you - glad you have joined MSW!

Take Care

[JerryD]

Good luck on your journey. Your thoughts on diet seem to be of interest to many MSer's, me included.

[Mamabug]

"Coming out" with MS was also not an issue for me, as my symptoms came on with a bang (stroke-like symptoms) and required PT, OT, and many months of recuperation. MS wasn't dx-ed until almost 2 years later. By then, there had been more than one "possible" diagnosis, multiple flares, ambulance rides, ER visits and hospitalizations. It was a relief to, finally, be able to give a "reason" for unexplained symptoms.

Perhaps, if you don't wish to explain MS when asked about your diet, you can just say that you are exploring options that can help with some of your "health problems". If questioned further, it is really none of their business. You can just politely tell them that you don't wish to talk about additional details now. Then, change the subject.

[sarabeach123]

I struggle with this same thing! It has been a relief to tell some people about the diagnosis, but at the same time I have come to realize that I also don't want everyone to know. I have also changed my diet significantly, and I started Whals but didn't make it to the final stage, nor do I think I will be able to get there. I feel like many people are skeptical because they think gluten free is a huge fad. It is difficult to hide what I am eating (or not eating) and I do feel awkward about not providing an explanation about why I am eating the way I do. I generally say that I am sensitive to gluten and that I feel much better without eating it.

[eventhis]

Thanks, everyone, for your thoughts. It is awkward explaining the restrictive dietary changes to people who don't know I have MS--I like your ideas, though, and the link to the discussion from Feb. was very helpful. I don't know why I want to keep my dx private...I just do, for now. But I have a few friends who know, so I'm sure their wives know, so it's only a matter of time before I will start being asked about it by people I barely know.

[hsmaldo]

If the only thing right now that is "visible" about your MS is your diet--I wouldn't worry about trying to say anything other than you're changing your diet to fit a healthier lifestyle. SO MANY people are changing their ways of eating--just for the sake of being healthier. I don't think you need to explain anything beyond that.

I understand about not wanting your employer to know. I've had my diagnosis for over 4 years and STILL haven't told most of my coworkers or HR. I just took a promotional test and I worry that it would impede my chances of being promoted. I know it's "not supposed to" but in this aspect, I believe that it might.

I will keep it under wraps for as long as I can. My family and friends and my church family knows and I can get support from them. But there's no need for my employer to know at this point.

Like someone said, it's all very individual. Good luck for whatever you decide!