Social media has become a day to day event for most of society these days. There are so many avenues with Facebook, Twitter, Snapchats, Instagram, YouTube, YouNow, etc. So many ways to meet new and interesting people. So many different kinds of cultures, societies, lives.
But how does this affect me and those with MdDS? It's a huge part of us. With a disorder so rare that it is barely recognized in the medical world, it helps to be able to easily reach over borders and seas to find others who suffer the same. In just the last few words more and more people are finding our groups and realizing that they are not the only ones who have this frustrating disorder.
It's a place for education. A place to throw out ideas and suggestions for treatments. Coping mechanisms and exercises to help pull through some of the worst moments of having MdDS. We can discuss ideas to bring up to physicians and medical educators and even our government in recognizing this disorder.
It's a place to promote. A place to set up rallies, events, walks. A place to bring out new research studies that are being performed. Notify about petitions or letters to the government for recognition.
It's a place for understanding. I mean this in a sense of support groups not only being set up for those specific to the group, but also those who support the people who are part of the group. Friends & family who join in the conversations to learn more help the group as well. Although they are not suffering with MdDS, they can get a feel for what others who do are feeling. They can also learn more about the disorder.
It's a place for friendships. Like I said early, to be able to log onto anyone of the aforementioned websites and connect around the world with others who are literally on the same boat as myself makes me feel not so alone. These women & men who are fighting the same battle as myself takes the isolation of this disorder away. They help you not feel so crazy when you are having a bad day with your symptoms.
It's a place for support. Ok, well yea, they aren't called support groups for nothing. But seriously....those days where you are at your lowest of lows, to be able to get onto the group and post a long rant of frustration without any judgement, just to get those feelings out into the open and out of your own head. Then you receive multiple messages back stating, "We will get through this," "We are here for you." "We will fight and pull through." We, We, We, never you. Never just you. Because 'We' are in this together. The best part is your support group is available 24/7. No matter when you need them, there is always someone available to talk with.
So if you are part of a group already or thinking to join, what is my advice? Be active. Introduce yourself to your group by including information about yourself (if you feel comfortable). You don't have to do this as soon as you join, but try to do it within the first week. Respond to posts that you feel you can relate to or have advise for. Post your own situations. It's kind of like being in class, no question is a stupid question, no feeling is a stupid feeling. More than likely, someone else is going through the same thing or they have gone through it. Don't just post about bad, post good too. For some, seeing that others had a good moment in a typically bad situation helps a person to see their own light at the end of a dark tunnel. The point is to connect to people. Be a part of a bigger world.
~Sara
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