Monday, February 27, 2012

It's hard to find a community

I am not very active in MS support groups or organizations. It's not that I don't want to be, it's that I've had some pretty crappy experiences and it's hard to keep putting myself out there.

In 2009 I was a member of an online support group, which shall remain nameless. Things went pretty well at first, I got a lot of support in coming out of a flare that hospitalized me. But then I decided to start a family, and it all went downhill from there.

I've mentioned that I have had negative reactions to my status as a parent. And some of the worst reactions have come from other people who have MS. I think it must be a similar circumstance to why women are the harshest judges of each other - when you're already marginalized you seem to want to lash out at anyone who you feel maybe isn't AS marginalized as you.

In 2009, when I belonged to this online support board, I happily announced my pregnancy. And immediately was inundated to comments about how selfish I was, how could I do this to a child, didn't I care about my future baby, how irresponsible I was. And even some very direct and simple "you're a horrible person."

I was shocked. And as the insults kept coming, I also started to notice a distinct pattern to them. The people who insulted me were, by and large, people who felt that they were "victims" of MS. They were people who didn't share my outlook on life and who didn't have anything in common with how I managed my disease.

I am not insulting them. MS sucks. It really does. But my life is not defined by my MS. It has a severe impact on everything I do, yes. But so does me being fat, or being a woman, or being white, or being tattooed or any number of things. Something can be pervasive and have a huge impact on my life without my life being ABOUT it.

My life is about me. About my family. About being a wife and a mother. Before I was a mom my life was about navigating the world and figuring out how to have what I wanted. My husband and I had an awesome honeymoon in Myrtle Beach, we did everything we wanted to do, even when my wheelchair made it a bit more difficult.

But that is part of who I am.

I admit, when I was first diagnosed with MS I hid. I spent almost a year in my parents' house hiding from the world. I left their home only a handfull of times. I was embarrassed, I was angry, I was depressed, I was a victim of a cruel disease who took everything I had from me.

And then I decided I was done being a victim. I'm not trying to say I pulled myself up by my bootstraps or some nonsense. No. I was lucky because I had very supportive family members, I had a very good therapist, and I had my own stubborn attitude on my side. It was hard, but I did decide to change how I was living my life. I decided to stop hiding and I decided that I had the same right to a wonderful life as anyone else.

Some people never get there. Some people are not able to make the transition from "victim of" to "person with." Some people do not have the supportive family members I have, or the access to therapy and mental health services that I have. I am lucky, and I know that.

So these people who were at a different place than I, they insulted me because I was doing something they couldn't imagine doing. I was living in a way they could not imagine living. And while their insults hurt, they also showed me that I didn't belong there.

I have found a different community now. I'm new to it, but so far it seems to be full of people who are living with MS, not victims of it. There's even another member who recently had a child.

And when I announced my second pregnancy, the response was 100% positive.

It is sad to me that in small communities there is such division. It is sad to me that people with MS can judge each other so harshly. But it serves to remind me that I don't need to restrict myself to interacting only to people in my "community."

I have found many wonderful friends who accept me for who I am, regardless of my MS and regardless of my disabilities. These are friends who accept me as I am, even if they don't fully understand my disease they certainly try to be accommodating.

And that means the world to me. I have a network of people who love and accept me for who I am. Who celebrate my happiness with me and who don't judge me for anything but my actions. If I do something stupid, they call me on it. But when I accomplish something I am proud of, they celebrate with me.


  1. My best friends' mother had MS. I only met her in passing once, but if what B says is true, she was seriously a kick ass mom, and the fact that his mom had MS has made him a very verbal advocate for it. Another friend's mom has it, and he's CONSTANTLY asking K how her mom is doing and sending his love.

    Crap, I know bunch of people with either parents or family members with MS, and they ALL HAVE KIDS. Most of them conceived AFTER the diagnosis.

    Your stubbornness is going to be a benefit to you. B's mom's was. :)

    1. I feel that my stubbornness is a huge benefit. I also feel like while some things are more challenging to me, there's a lot I have to teach my kids. Who better to teach them to never give up and to always give 100% than me? Who better to teach them compassion and why we don't judge people for being different?

      Yes, able-bodied parents can teach their children the same lessons. But I do believe that there is a certain benefit for being able to teach your child from direct experience. You know?

  2. wonderful post Jennifer! I loved the victim a person with!You have came along way you may not know what is around the corner as far as your capablilities day to day but I dare say you do more living and loving than some people that consider themselves with no disablities. You hang in there I hope Alienbaby gives you a break on the morning sickness!! and hug that beautiful red headed little boy for me!! Jean ps I am so parcial to red head's LOVE THEM

    1. Thank you, Jean!

      The morning sickness has gotten better. Thankfully!

      I'm pretty partial to redheads, too. Especially since I have one! I can't wait to see what features the next one has.