I recently attended a local NAMI conference with my mom. I was incredibly touched by the stories of family members who shared their experiences of living with a loved one who has mental illness. I realized that it was important for me, as someone who has mental illness, to understand what my family goes through. It occurred to me that others might want to hear from family members too. As we walked out of the conference that day, I asked my mom if she would share her story with you. She graciously agreed to do so, and I have the privilege of posting it below. I'll admit it's slightly embarrassing for me as she says far too many nice things about me (and I really was not looking for her to do that, honestly!). I love her and appreciate her. She has suffered right along with me and I know countless tears have been shed on my behalf.
OCD. Our Courageous Daughter. That's what OCD means to me now. I'm so familiar with this disorder because "Our Courageous Daughter" has OCD. However, I never had any awareness of this disorder or that she suffered from OCD until she was in her late 20's, and was married and living on her own. As I look back, I can now see where she had some tendencies of OCD as a very, very young child. My husband and I had never experienced, or even had heard of this until our daughter made us aware of it.
OCD was so difficult for many years, for both she and I. She would worry over things, at times, that I couldn't even imagine worrying about, or she would repeatedly ask for reassurance. She would ask me the same thing over and over again, to reassure her that it was ok. I would get to the point where I just wanted to scream “Why are you asking me, if you don't take my word for it, and then you go ask others the same thing!” I called this the "survey said" syndrome. Now I know why she had to ask so many times, over and over and over. She was not capable of stopping.
If our daughter came to our home and I was cooking, I would have to ask her to leave the room, because she would constantly get upset that I didn't wash my hands when and how she thought I should. She would always expect me to wash my hands if I touched the trash can, or something on the floor. The list went on and on. It seemed that I couldn't do anything without upsetting her.
As difficult as it was to live with her behavior, it was more difficult for me to see how she was tortured. Yes, I use the word 'tortured.' As her mother I couldn’t do anything to help her. I couldn't reassure her enough, or fix it for her, or take it away, but I could enable her. At times, it was easier to enable than to address the behavior. We would pray together. Sometimes I would go to her house (when she needed me to go) and just reassure her. She would call or come over anytime she needed it. It was exhausting because I knew no matter what I said or did, it wouldn't change for her. As a mother, that is heart-breaking. I missed going out with her as a mother and daughter, as some of my friends did with their daughters. There were so many things she couldn't bring herself to do, like even cook a meal with me. I admit sometimes I was jealous of my friends and their relationships with their daughters, as they would go shopping, cooking, do house projects together, etc. It was ok though, because it wasn't that she really didn't want to do these things, she just couldn't.
It became extremely difficult when she decided to go through CBT because I had to watch her work through the pain of it. However, the change I have seen in her since therapy is nothing short of a miracle. When she came to visit my husband and I for a week in Florida this past February, I prayed so much that God would bless her, and give her a great week of relaxation and fun. I wanted her to just be able to enjoy herself, without worrying about everything and being afraid of touching things. I remember the night before she came, I was on my knees, in tears, begging God to bless her because she had worked so hard at her therapy. She had come such a long way with therapy and was getting so much better and putting her trust in God. I didn't want anything to stand in the way of her week. I spent the day before she came cleaning everything in sight. This included rewashing clean sheets (although I ended up using brand new sheets instead), rewashing the mattress cover and the blanket, re-cleaning the bathroom she would use, and even cleaning the shower curtain liner. I guess I was acting like I had OCD too. Sometimes I feel like it rubs off on you. I just didn't want anything to upset her. A mother of a child with OCD will sometimes go to extremes not to cause anxiety.
WOW!! Does God answer prayers. We had such a wonderful week. She came in without asking one question about the place we were staying in. There weren’t even any questions about bed bugs and I was really worried that would be a big issue for her. She went to the pool every chance she had. She went to the beach (and even picked up sea shells and brought them home). She arranged for the two of us to go for lunch and have a pedicure at a gorgeous place. What a treat that was. We even went shopping at the dollar store. Now that's AMAZING. It was such a joy and pleasure to have my daughter there. She had such a good time that she even extended her stay. I can honestly say that when she left, I wished she could have stayed longer. It was so pleasurable spending time and doing things with "Our Courageous Daughter." Thanks to God and to the therapist who helped our daughter have a full life and really live again.
One of the most loving and productive things someone can do is to educate themselves about OCD. Reading books and going to therapy for a few sessions with my daughter were some of the best things I did. I also got to understand the disease from the therapist’s point of view. I used to think, “Why is she not trying or why is she giving in on this?” I learned that her brain was wired differently and it’s not that she wasn’t trying hard enough or she didn’t care, but she really couldn’t do these things. After, it was easier to help my daughter because I got less frustrated, and I learned how I could help her by just loving and supporting her, and listening to her, and even just hugging her while she went through the anxiety.
I thank God for His grace and mercy and for "Our Courageous Daughter."