By Amanda Ripsam
This post is one of the more challenging posts I have had to write. I was asked how does 22q affect me personally and how does it affect my daughter. My friend Kim and I exchanged post for a guest post on one another blog.
How a genetic disorder affects mental health
I never really know how to answer this because I don’t want to give off the stigma that because I have PTSD and ADHD that all of us who have 22q have PTSD and ADHD. I also have panic disorder and syncope. My daughter has the same issues minus the PTSD. PTSD is not from the 22q but the abuse I endured as a child, and the trauma I experienced which I wrote a book about but have not yet published. I would like to publish it, but I am working on how I have grown and healed and yes even recovered from the extreme aspects of PTSD. Writing has been my way to cope and a way I release all of what I experienced. It was a journey of self-discovery and growth. Having my daughter gave me the reason to keep pushing forward, at the time of my recovery it was my reason, but if your child is the reason for recovery you won’t fully recover. I had to fail three times, and three different in patient stays while I healed. I am currently writing about that time. I am writing about how my faith helped push me through the hard times and every day I need to make choices and put in an effort with the thoughts of ‘would this hinder my recovery or not? ‘After having symptoms gone for almost ten years and wholly recovered for nearly 5, I have come a long way from the shy quiet person people used to walk all over.
I use my voice and advocate as well as a mentor for others who were or are dealing with what I went through when I first was diagnosed back when I was 21 years old. Still, just a kid trying to figure my way in the world. Now I am 35 I have the 11-year old I have been doing a lot of self-reflecting and Kims questions couldn’t have come at a better time in my life.
My personal first-hand experiences were not easy we are not all cookie cutters, no two people with this genetic disorder are the same, so treatment has to be tailored. 22q is a total body disorder. It effects from head to toes. There are doctors, and specialist my daughter and I both see that help us heal as well as we are doing. We are doing as well as we are because of my personal firsthand experience and the help other doctors who have helped us
it can be a lonely place for a mother too, no one knows what you are going through until you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience in my case there is no boat for me. I don’t know many other adults with 22q and have children with 22q. I don’t fit in; I had to make peace with the fact I was born to stand out. Bella and I are struggling with the same daily concerns as you are but we don’t get that sense of a ‘new’ family when we join support groups. I had to create my own. Because of the identification and understanding that you get from each other. Support groups are vital really – they make a difference between feeling hope and despair, between hanging on in there and giving up. That is why I created my blog it has helped me have a place to brain dump while finding others who accept Bella and I and my family all with how we are and where we are at without judgment. It’s only now looking back that I can see the enormous emotional and psychological toll that loving and caring for a child with special needs can have on a family. Even my friends have been affected to a certain extent. The times I have had to ask for help, or the times I have had to retreat into my own cave. All my relationships have been affected. I only have a small group of people I can count on. When I created my blog, it opens an entire world that grew beyond my own control. Followers, haters, copy caters and even people who go out of their way to exclude us because we are not one of them! I have my own truth, and they have theirs. There is a large community that reads my blog and just listening to each other and connecting one on one has been the most helpful. People need to know they are not alone. Including People like Bella and myself.
Isolating and staying up into the wee hours of the A.M. studying side effects of medications reading articles after articles that all people who have 22q have a chance of hearing voices in their head, that is the stuff nightmares are made up of. I don’t hear voices, so what is wrong with me and a million others? ‘what if?’ or ‘what is wrong?’ questions go through my head. I am also always second guessing what I thought I understood about 22q from watching my siblings and father, to how raising my own child with 22q. My first-hand experiences are unlike anyone else’s, who’s boat do I fit into? The hardest part is the stigma that even parents of kids and adults have on people with 22q that we all ride the short bus and the shock when we wipe our own butts, it’s shows the lack of understanding and support. That’s the stuff that makes some of my 22q friends not even try because; it’s like why bother? they will look at us the way they do anyhow. I had to learn all of this with a handful of people online who were supposed to be there for support instead they watch and stare and then glare that I am happy. When I post a yay I did it post; I hear crickets. I post oh no one of us is experiencing a flare-up; I get all the hugs and prayers in the world kind of responses.
Then you add the people who have to show they know more and can do more than you do. Those are the insecure people who like to copycat and take my ideas and get credit for it and are offended when I call them out on it. So instead of dealing with all of that drama, I have excused myself instead of seeking support from others in the 22q groups and find support elsewhere. I have so many other supportive people who I adore, and they adore me just as much. The toll 22q can take on someones mental health is unspeakable, and sometimes it’s preferred to remain unseen. That stigma is strong, I wish it weren’t
Mental health and having any kind of disorder is a challenge but when you have been dealt the card of having a genetic disorder that you passed on to your own child you are looked at like a freak of nature and are to be avoided at all cost.
Thank you for reading this post, it’s hard to express and I only hope these words can help someone out there to know they are not alone.