October is OCD Awareness month. I’d like to dedicate this piece to honor those who struggle with OCD or any other mental illness. Remember that you are not alone.
At the age of 15, I was diagnosed with clinical OCD (Obsessive Compulsive Disorder). I would like to state that someone who has OCD is not someone that struggles with aligning shoes in a perfect order by color or size. It is an anxiety disorder that is extremely troubling to the individual and can be quite traumatic. I struggle with contamination OCD and have also experienced maternal OCD while pregnant. My illness has become an issue as I have struggled throughout the years with the fear of illness and germs, as well as an eating disorder.
Because of my illness, I have learned to cope, adapt, and advocate the majority of my life. I know what it’s like to have a mental illness and how it has impacted the lives of my parents, siblings, and friends. I know what it’s like to have a mental illness as a parent and how that effects the lives of my husband and my children.
What I don’t know or understand is what it is like to be a parent and have a child with a mental illness.
When I was younger, I watched my parents (my mother especially) lose sleep, cry, put forth endless hours of research, and fight for my well-being and acceptance. My mother has always been my strongest support system. Even now at the age of 34, I still call my mom for advice, comfort, and counsel. However, I have never asked her what it has been like for her. It must have been so difficult for her, especially since for so long she did not have any of the answers.
Presently, mental health awareness is on the rise. More research is in place, there’s more support, and individuals are more vocal in the fight for support and funding. In the 90’s this was not the case.
So now I am taking the opportunity to discuss this topic with my mother, and she has so graciously allowed me to interview her so that she can share her experiences with other mothers within the Corridor area.
A Mother-Daughter Interview on Living with Mental Illness
Me: What were your feelings or impressions of mental illness growing up?
My Mother: It wasn’t something I thought much about, and it wasn’t really ever talked about a lot. I don’t remember having many feelings or impressions other than one that I still think about sometimes. On occasion I would hear bits and pieces about a distant relative that committed suicide. He went out into the woods and shot himself. It horrified and saddened me to think that a family member was in so much pain that he chose to do this. When I asked questions about him there really weren’t any answers. Not sure if it was because it just wasn’t talked about (just kept hush hush), or if there were no answers because they really didn’t know. All I was ever told was he was depressed. It’s probably the closest I think I ever was to hearing about someone that people called “different” back then.
Me: When I was first diagnosed, what was your initial reaction? What were your concerns?
My Mother: My first reaction was relief that what I had suspected was wrong with you was finally diagnosed, and we would hopefully be able to get you the help needed with everything you had been suffering through for so long. Then… everything turned into panic, wondering what all would need to be done to help you (meds, therapy, etc.). I also had an overwhelming sadness knowing what you have been going through and will continue to go through all your life.
Me: Did you communicate with others what was going on with me, or did you keep it secret?
My Mother: I never really talked to anyone about it. Not because I was embarrassed or wanted to keep it a secret; it was because I didn’t feel anyone had to know until I knew more about it myself. How was I going to explain something like this when I hardly knew myself? There was so much I needed to learn about OCD, and I was more concerned with getting you help first. If you remember, you had also asked me not to talk about it. You were concerned that you would be made fun of in school. I of course didn’t want to see this happen as well. Eventually it was talked about, but more so if someone brought it up because they noticed a change in how you were acting, etc.
Me: How did you personally cope with my diagnosis?
My Mother: Prayer. My faith is what kept me strong and still does. I think if I didn’t have my faith I would have fallen apart. I also like to read, so I was constantly reading books, as well as spending hours on the internet searching for ways to help you with the illness. Also, I was determined to find a good psychiatrist/therapist for you and for myself. Once we did, that helped tremendously.
Me: Were there any barriers (roadblocks) that we faced during that time? Access to medicine, doctors, issues with school, etc?
My Mother: The first barrier that we faced was financial. I was concerned with whether insurance would help pay for things. Luckily ours did, but it was very limited coverage. If I remember correctly, we were allowed only so many visits for therapy. Because of this, a lot of the expenses were out of pocket which got quite expensive at times, but thank God we managed it okay.
Me: Was there a time when you wanted to break down? Do you remember a specific event that lead up to this?
My Mother: I remember crying a lot. I think it was more of a release for me. But then I would get up and get back to business, so to speak. I had to, for you. Falling apart wasn’t an option, because I knew you needed me. But believe me, it would have been easier to have just fallen apart sometimes. I think maybe the closest time might have been when I couldn’t get you to stop washing your hands. They were raw and bleeding from you washing them so much. That was hard to watch. That was probably (if any) the closest I have ever been to breaking down.
Me: How do you explain my illness to others?
My Mother: Just exactly like it is. I don’t sugar coat it to make it sound like it is not that bad. I let them know exactly how you struggle with it every day and how hard it can be at times to control or stop the intrusive thoughts. I also make sure I tell them just how proud I am of you and all you go through every single day dealing with your illness.
Me: How have you learned to adapt to my illness?
My Mother: What has helped me adapt the most with your illness is knowing firsthand what OCD and panic attacks really feel like. I live with the unexpected possibility of having a panic attack at any time and I have had a very mild form of maternal OCD. Because of this, I can empathize with you immediately when I know you are having a really bad time. It’s one of those things that becomes a daily part of your life that you sort of stop what you are doing…talk you through it, listen to, or just be there for support if needed.
Me: What advice would you give to other mothers whose children have been recently diagnosed with a mental illness?
My Mother: Breathe…there is HOPE! I’m not going to say that it isn’t challenging and difficult at times, but not to despair or give up. Things have come a long way since my daughter was first diagnosed. There are more doctors, psychiatrists, therapists, support groups that are out there now that specialize in treating specific illnesses to help your child. Take advantage of everything you can to help your child and YOU through this. It’s a rough journey for sure, but one that has brought me so much closer to my daughter, and I am so extremely proud of her and all she has accomplished while living with this.