Your News to Tell

Should I tell people I have MS? Who should I tell? When should I tell people? Do I have to tell people? Who can I trust with this information?

This might be one of the hardest initial steps to take on following diagnosis: who and when and how do you tell people if you even do. When I was diagnosed, I knew right off the bat I wasn't going to be secretive about it; I totally and completely respect people who choose to keep this news to themselves or a few very close confidants. This situation has to be tailored to you and what you need, what you're comfortable with, and what and who is going to make you feel safe. Unfortunately, even if I had wanted to keep my diagnosis private my symptoms weren't allowing for that. I had been struggling with nausea and vision issues to a level that it had been impacting my social life and ability to carry on my life normally for months leading up to my diagnosis; many of my friends and most of my family was already very aware something was going on, we just didn't know what it was. That being said, when I got my diagnosis, people were concerned and were already regularly checking in, so it seemed only fair to give them the answer to all of our questions. I had been frustrated experiencing symptoms without knowing a cause so I could relate to the fear and frustration they had for me being in the dark. I wanted to ease their minds by taking the mystery out of the situation, but I also wanted those closest to me to be able to understand why I was - or more often wasn't - doing certain things. 

Now part of why it's so challenging to decide who/when/if to tell people about your diagnosis is that there is an element of trust in disclosing something so personal and life-altering. People react in all different ways, and it may not always be the way you expect, want, or need them to react. Now if you decide to disclose your diagnosis, which honestly I would recommend, I would include this with the disclosure: it is your news to tell. It's not the recipient's job to tell others, inform the rest of your family or friends, or reach out to people on your behalf, unless they have your permission. I did not include this bit when I told people, because I didn't think I needed to. Mistake.

Long story short, when I was experiencing symptoms pre-diagnosis I had told a few family members that MS was on the table as a possibility, but at the time I was told there was only a 30-40% chance that that was what the issue was. The news was passed along; intentions in telling were by no means bad at all, just not entirely thought through. Normally, not a big deal, however a few people that were told really enjoy telling everyone everything, whether it's theirs to tell or not. Soon enough, nearly the entire extended family had been told I did have MS - I didn't even know for sure that I did at this point - and the ones who heard through the grapevine were actually upset that they hadn't been told by me or my in-laws! I was fuming. Whether good news or bad, big news belongs to the person it's about and it's theirs to tell. In this case, it was my news to tell, if and when I wanted to; I was blown away by the expectation of so many people that thought they had a right to know my personal health information, family or not. 

Actual depiction of me when I found out all of this had happened:

I think this is one of the fears people have with sharing their diagnosis; if they tell a few people will it spiral into the whole world knowing? Fair concern, honestly. But that's where respect comes in; the people close to you should respect you enough to also respect whatever requests for confidentiality and privacy you make, but you have to make your expectations known. If you read my last post, you know that I just got big news in the positive direction regarding a great job offer. I made sure when I told people about it that I expected them to respect my privacy and wishes and not spread it around because it was my news to tell. Whether or not that happens this round only time will tell, but situations like that teach you who you can and can't trust with important personal information; unfortunately sometimes there's a learning curve and you'll make some disclosures you regret while you discover who you can trust most, but that's life. 

This brings me to an important piece of advice: be the person you wish others were with your news. If your friend or someone in your community discloses that they have MS or some other form of personal news, that is not license to then share that news with others, even if you think doing so would help them - what would help them is up to them. Just because they trust you with the information and want you to have it, doesn't mean they have the same feelings about your inner circle or others in your community. Just like your news is yours to tell, let others' news be theirs to tell if/when/to whom they're ready to tell. You'll save people a lot of stress, grief, and aggravation by not being the one to spread their news, and you'll also provide them with safety, support, and comfort knowing that you're someone they can trust and talk to. Imagine how you'd want your information handled, and until you have permission to do otherwise, treat theirs with as much protection as you would your own darkest secrets.