Difficulty talking to people

[sarabeach123]

I've been diagnosed for 1.5 months now. I am going out for supper this week with a couple of friends that I haven't seen since the diagnosis. I am having a really hard time talking about it without crying, so I am nervous to see them. I also feel really awkward around people when I try to make small talk. People ask me how my summer has been going and I pretend like things are going well and I feel like such a liar. I am scared of telling people about the diagnosis because I am worried that they will act differently around me, that they won't know what to say or do and will feel awkward. I have told a few friends and some of them do seem awkward - I don't need or want pity or counselling or false reassurance from them that everything will be fine. I am actually not sure what I want from people when I tell them. Maybe if I knew that and could tell people what I need from them then it would be easier for them too because they would know what to say.

I am also struggling with how and when to tell people and how many people to tell. I am scared of people thinking I will not be able to do my job properly or that my appointments will take too much time away from work.

Right now no one would be able to tell that something is wrong, except that I am probably more withdrawn and sad, but my physical symptoms are not apparent to anyone but me.

[hunterd]

everyone is different, and so will their reactions be. You are powerless to make them initially react the way you want. But what you can do is use this to educate them about MS. It is also a matter of personal decision whether or not, and whom, you wish to tell. My advice to you would be to wait a couple months B4 you tell people, this will give you time to "Polish" your "speech" and it will also give you more time to come to terms with this. No matter what you end up doing, remember that it is your decision and there is no right or wrong as to when you deeside to start telling people about your diagnosis. I wish you the best of luck.

[BadAttitude]

Sara,
You are right to feel anxious about telling people your diagnosis. No one knows what you're dealing with better than you, and you said it yourself: You don't know what to expect from them or what to ask of them when or if you DO divulge. Since you're so new to all this, you should consider asking your neurologist for a referral to resources for his patients with MS. My neuro has a social worker on staff who links patients to resources like yoga classes, support groups, therapists, you name it. She is pretty good.

Look up MS support groups in your area via the Ms newsletter the National MS Society sends out, or check out their online site for the same information. It can put you in touch with other MSers who have been in your shoes too, who can tell you what their experiences were and how their approach did or didn't work for them. You can get that here too, but there's a lot to be said for face to face interaction and support.

I will tell you I kept my diagnosis pretty close to the vest in the first several years because I had that luxury, having only visible symptoms. Additionally, I was mindful of the negative impact that ignorance about my diagnosis could have had in the workplace. That's why it's so important to GET the support you need from the right folks so that you can control what information people near you get, and which people you decide to tell...once it's out there you can't take it back.

Good luck and take a DEEP breath. If you don't tell people that doesn't make you a liar. You aren't obligated to tell everyone you know everything that is going on, nor do they have a right to information you aren't sure you want to share yet.

[Deela]

It is your story to tell, so you make the rules.

Hi sarabeach123,

The hesitation in telling people seems normal, especially in light of being newly diagnosed. It took me over a year to be able to even say "MS" without crying or at the very least getting chocked up. It took a relapse to get me to finally open up to those outside of my immediate circle. That was two and a half years after my initial diagnoses. When I finally let the cat out of the bag, it felt like a weight had been lifted off my shoulders. It was the right time for me.

Don't push yourself to tell people until you are ready. The first few months following the diagnoses are difficult enough...learning about medications, side effects, the medical lingo, adjusting to your new normal...give yourself a break. Tell people because you want them to know and think they will be able to enrich your life during a period of medical turmoil and emotional upheaval.

Not telling them does not make you a liar at all. I agree with BadAttitude, you are not obligated to share every thing with every one. Take your time to adjust and tell people when you are ready.

Best of luck to you!

[RGI]

I am having a really hard time talking about it without crying, so I am nervous to see them. I also feel really awkward around people when I try to make small talk.

You're not alone. I think we all have had the same reactions even if we weren't emotional people. A lot has probably been running through that mind of yours. It also could be because of the MS too. And if you're on steroids, they will make you emotional. I am a man and I am not one to show emotion and they made me emotional. Don't worry, reality is not actually how you're perceiving it to be.

I hope one day you would come back and tell us how dinner went. Your friends may respond the same way some people around me did. They couldn't tell anything was wrong. No one is harder on yourself than you are. After years of this I think I got a hang on it. The worse part of it is being ABLE to formulate the sentence that you want without taking too long to search for the correct word. When i take too long to find the word I just make a joke or try to substitute it for a similar word. If one cannot come to the surface i stop at the joke and change the subject a bit. It is a difficult thing to deal with...at least for me. Don't worry about it so much. You never know what their life is like. And honestly....it could always be so much worse. No?

Trust me, it could always be so much worse than having to explain yourself. And if you don't feel like explaining, then don't. But if I were you I would hear them out first. Let them talk first. That will allow you to assess the situation to see if dinner is the right time or not.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **