Telling People About MS

I have come to an awkward stage of my multiple sclerosis. Those close to me already know, but now that winter is over, I have my daily acquaintances that I haven’t told. My initial onset started in January with a confirming diagnosis in February. I talked about my symptoms and diagnosis with family members and close friends. I talked about my journey on my blog, sharing my experience with people all over the internet. I told my boss and my coworkers. I haven’t been back to my job, it was a part time waitressing gig so not much of a loss. I holed up in my house over this long boring winter and rainy spring. Now that that the sun has come out, I find myself running into other parents at the school, the regular people I make chit-chat with while I sit on the bench and watch my kids play on the playground.

I find myself having awkward conversations, mentioning that my legs are sore but not really giving a reason. I say I’m tired but I’m the young mom that doesn’t work, so I can feel the internal eye rolls. Some moms notice that I put my daughter in a part time pre-school and now that I have ‘so much free time’ what am I doing all day. Classic stay at home mom dig. First of all its like 3 hours, second I was going to doctor appointments for like 3 months, third I just try to go to the gym. But I don’t even feel like explaining. I’m not good at small talk, its a wasted effort. I just smile and keep to myself. I share a lot online but in person, especially in groups, I clam up. I get overwhelmed and feel uncomfortable talking about myself. Am I supposed to notify everyone of my current health situation? I don’t feel like bringing that kind of attention to myself. Its the end of the school year and I just want to get to summer. I have never been the kind of person to make excuses I rather keep to myself. I’m not a talker and I could care less what people think which sometimes leads to misunderstandings.

I do enjoy sharing and reading about MS online. I have found so many resources, so many people who willing share just like me for the benefit of the MS community. I have found different diets along with real life applications and recipes. I have found people on the same medication as me with stories of their experiences and how they feel daily. I have found mentions of mental health, something that I feel is still taboo to some people and I genuinely appreciate their honesty. Mental health is a huge part of a life long diagnosis and should definitely be discussed and shared. Reading about other women, other moms, who are in the same situation as me, gives me confidence in pursuing as much help and resources that I can get my hands on. One blogger in particular discussed various anti-depressants she was on. Once you find one blogger talking about a particular subject, you stumble upon more people discussing the same thing. Just reading about the mental health side of MS gave me a little boost that maybe its OK if I need a little help.

So do I share with my immediate community, the acquaintances I see everyday at the school? The people who ask me to volunteer when before I had the excuse of work and now I just think, I have no idea if I can stand that long. I will take it day by day. If the timing is right and it comes up naturally in the conversation, I might mention it. Most likely I will probably keep it to myself for now. It is all still new for me too. This is the first year, firsts for everything. I have just started medication and this is my first summer. I have no idea how the heat will affect me. I am usually a very active person when the weather is right so I am a little worried. I am dealing with a lot of conflicting emotions myself right now, worrying I will not be the active fun mom for my children that I envision myself to be. My children are young so I tend to push myself for the sake of their happiness and amusement. Maybe once I am more confident and secure in my own acceptance of this disease, it will be easier for me to talk about it frankly. For now I will let people think what they want and persevere through this awkward stage.

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3 comments

  1. The one thing I will say because I have learned this the hard way, you do not owe anyone any explanations. You only need to share what you are going through with those close to you and those you want to share with. The other mothers do not really need to know what is going on in your life. Honestly, you should only talk and share with those that care about your well being and no one else. People do often judge because they have absolutely NO idea what living with MS is like. There are those days we feel okay, but then others when we feel drained and terrible. You my dear do not have to force yourself to talk about it with people unless it helps you and doesn’t cause you stress. I use to try explaining MS to people, but I swear it goes in one ear and out the other, which just makes me frustrated. I am not telling you what to do in these situations, I am just saying what I do now is not talk to those that do not matter in the big picture!
    I hope your day has been great and I hope you are feeling well!
    Oh, speaking of the leg issues! While at work today a co-worker that does know I have MS called my name and then said “Are you okay? Your leg seems to be dragging and it looks like you are not well.” First over all this person has made numerous ill comments about me previously and we do not talk at all. I was taken back by her comment and said politely at first that I was fine. She continued to push the topic and I said louder and a little more hateful that I was fine and walked away. People try to involve themselves with things that has nothing to do with them and I find that rude! Sorry I went on so long!!!.

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