This may be a difficult area for some people and not for others. To me, I do not see the shame or reason in not telling others. As long as this is not the only thing out talk about. It is not the first thing out of my mouth when I talk to people. But if brought up or if needed to be known, I do not mind sharing thatI have it. I may have MS, but MS does not have me. I think the more people know about it, the more awareness we are bringing to MS and to one day find a cure. I think the sole purpose that I do share the fact that I have MS, is to educate people. Stop the rumors before they start, get people educated on what is really going on with your health now, and let people know how strong you are. The more people know about the disease, and the REAL truth about it, the better.
One of the difficult things to me when telling people I have MS is the look you get after you say the word MS. Some are completely shocked and more often then not you get the “pitty look.” That one is the worst. I know people do not mean it or may not even realize they are doing it, but the look of poor you is never a fun one to receive. But then my next comment is, “ So now I fight this disease with everything I got, take care of myself, and pray one day there will be a cure so no one else has to go through this.” People tend to then respond with a better outlook and you don’t feel as bad.
Telling my family members was the strangest and hardest thing to do. When I was first officially diagnosed my husband, then boyfriend at the time, and my parents were all with me. The looks on their faces I will never forget. Then after that the rest of my family one by one found it. It was hard to hear others cry over something I have, but knew I had to let them go through the emotions of it all and be grateful they care that much to be upset for me. Still made it hard, because the more people found out and more it was talked about the more real it became. As weeks went on after being diagnosed, the cards, flowers, and phone calls came pouring in. Let me tell you, I never felt so loved in my life. And people you would never imagine or think of reached out to me. I said it was like living my “Live” funeral. I heard and was told things I felt that you would only hear when you die and at your funeral. I know that may seem strange but its the best way to put it. It was so incredibly touching, words can’t even describe. I will never ever forget that feeling as long as I live.
It makes you really think what truly matters in life when things like this happen. And like I tell my family, if I have to take this one for the team of having this stupid disease so we all can see what matters in life, I will.
So if you are having trouble finding the words telling others, educate them. That is all you need to do. You do not need sympathy, you need fighters and supporters on your side. So let them know what’s going on so they can push you to be the healthiest you can be!
