The definition of OCD (Obsessive Compulsive Disorder) is the presence of unwanted thoughts leading to excessive compulsions and it is pure hell! I was diagnosed when I was 10 years with Anxiety/OCD. I never understood why until probably just this year. I knew I was easily upset and that things would make me nervous and angry, but did not really realize that it was not typical. That is 17 years of not understanding why my brain was torturing me. I always thought having OCD meant you had to have everything neat and tidy. I knew that wasn’t me because most of the time I feel like everything is a disaster. Growing up I never kept my room cleaned up perfectly. I think a lot of people have this misconception. Someone with true OCD does may want their things in a particular way, but not jut because it looks nice or fits nice there, they take it to another level. It tortures them until whatever needs to be changed, is changed. The behavior they demonstrate is a result of whatever they are obesessing about.
Mental illnesses are not well understood in our society and they often carry sigma. People often fear sharing that they have a mental illness because of judgement and shame. I like to see it more as a “quirk”, it is something I struggle with at times, but it does not define me. What defines me is that, I am a Daughter, Sister, fiancée, Teacher, Friend and so much more. I am not OCD.
Here is some background information about when this all started for me:
On day in the summer of 1998, my sister and I were watching TV downstairs. I remember hearing thunder and running upstairs in a panic. My parents were getting used to my storm freak outs so they were trying to help me through it. We turned on the TV to check the weather, the power went off. Then we opened the blinds to look outside to prove it was just a regular storm-the tree in our front yard was bent so hard that it was touching the ground. That is when we realized this wasn’t your typical storm and went downstairs. Later we found out it was a tornado. I think the tornado may have registered at a F1. The damage was minor and mostly consisted of down trees and derby thrown around. We were without power for several days. It completely rattled me. I started to not want to go outside anymore. Anytime there was a storm I was a complete wreck. I remember my Mom buying me those fuzzy posters to color during storms because it kept my mind busy and at ease, at least a little bit. One of my Dad’s co-workers had an old book about the weather and they gave it to me to read. I read it and I learned about storms, it helped me significantly.
I also developed a terrible fear of dogs, to the point that leaving my parents front porch was not an option because a stray dog might get me. I had grown up with a large German Shepard/Lab mix. She was sweet and gentle. I wasn’t afraid of her but she passed soon after my anxiety had ramped up. I remember not wanting to go to family members and friend’s houses because their dog might “eat” me. Then, my parents bought Amy (my Sister) and I a puppy for Christmas. A puppy wasn’t scary to me because they were so small and helpless. We raised her and I swear to
this day that a lot of fear was taken away by her. If a storm was coming she would lay with me until it passed. She helped me over my fear of dogs by showing me how gentle they really can be. Immersion therapy at its best.
In 1998 I lost my Grandmother. She was in her early 70’s and she was the only Grandparent I had left. My Mom’s parents passed away by the time she was 5. My Dad’s father passed when I was 2 years old. My sister and I were her only Granddaughters at the time. My Grandma came to our Ballet recitals,stayed with me when my sister was born, came to school to volunteer and read to my class. She was an amazing woman and I wish I had more time with her. My Grandma fought Pulmonary Fibrous. Her lungs were hardening everyday. She found out she had the disease the day that her husband, my Grandpa, died. She lived 8 years with it, which is longer than most people do. The doctors said that had my Grandpa not died when he did, she would have died sooner. My Grandpa smoked in the house and it impacted her health greatly. The night before my Grandma died we went to visit her at my Aunt’s house. She was in a medically induced coma. She was just laying there in a hospital bed in a room in their house. I remember sitting in the room with my family, my Dad talking to her, and be given some jewelry that she apparently said she wanted my sister and I to have, and I remember getting slippers for some reason. When we were leaving my Aunt’s house I remember sitting in the car crying hysterically. I knew that was it, I was only 10, but I knew. The next morning we were supposed to go to school. When I woke up I noticed it was late and my alarm hadn’t gone off. I knew she had passed. My parents had turned off our alarms to let us sleep… a few more minutes of some normality. We packed up our stuff and headed to Pittsburgh, where we planned and attended her funeral. In about a week we were home and back to “normal”. My Grandma was an amazing person who I love very much. Although she had passed by the time I was 18, she had set aside a piece of jewelry for my Aunt to give me on my 18th birthday. Nothing as ever meant so much to me.
I cannot remember the exact timing of everything else but around this time my Mom got very sick. The doctors could not figure out what was wrong for what felt like eternity. She was in horrible pain all of the time and was just very sick. I remember one night in particular that I thought I was going to lose my Mom because it seemed like her body was failing her. I thought I was going to have to experience what she did with losing your parents at a young age. It was terrifying. I specifically remember the terror, my sister was not much older than my mom was when my Mom’s parents died. I was convinced in a way that it was our “fate”, and it was going to happen to us too. Needless to say, the doctors eventually pin pointed the problem and were able to help. During the time that she was sick, my Dad obviously was the one enforcing rules. My Mom was always against us watching The Simpsons, but since she was sick and Dad was in charge so we got to watch it. It ended up being something we watched as a family after she got better! Thanks Dad! haha!
My worst fears have changed from storms and dogs to losing someone I love. I worry at probably 10-15 times a day that something bad will happen to a loved one, each and everyday. I imagine that I was probably born with anxiety. However, the obsessive behaviors started around the same time as those events. My life experiences have shaped my anxiety into what it has become. Now, don’t get me wrong…I had an amazing childhood. I was raised by two of the most loving parents. This just goes to show that no matter where you come from you do not get to escape mental illnesses.
My obsessions are always linked to fear of someone getting hurt. My compulsions are always linked to an attempt to make sure nothing happens to that person. It is like my mind is playing with me, trying to make me feel that I can control keeping them alive if I just do whatever is in my brain. My compulsions are typically a random bunch of things. I HATE odd numbers. If I turn my radio volume up and it lands on an odd number I have to change it. If I do not change it a family member may die in a car accident. Sometimes it is that I must have the stupid dial on the dryer exactly lined up or I am screwed. My compulsions sometimes consist of me seeing something on a fridge but not really reading it, but then I am forced to go back and read it in its entirety or someone has a heart attack today. It is so frustrating, heart-breaking, and a waste of my time.. I don’t want to read what is on the fridge, I don’t care if the dial is lined up perfectly on the dryer, and numbers are just numbers. However, my brain won’t let it go. I know it is not rational to believe that I can keep someone alive by performing these dumb rituals, but I am terrified of what would happen if just by chance they did get in a car accident. I would never be able to function again because I would always think, well maybe I should have done that, even though sensible me knows that it is completely irrational. I’ve told my family over and over again that it is really exhausting to keep them alive all the time! I can laugh about the thoughts that come in my head afterwards, because I know they are irrational and no where in the realm of possible, however in the moment I cannot laugh because all I feel is fear. Who in the world wants to think about people they love getting hurt? I know I don’t! I wish I could just cross that bridge if it comes instead of obsessing about it all of the time, but I do not get that luxury. One time my counselor said that I should focus on being with them and happy memories… so much easier said that done. Instead I think, what if this is the last time I see them, what if, what if…
Fear tries to run my life, but I always try to fight back. If you could hear inside of my head at an airport you would wonder how in the world I ever get on an airplane. I do because I can’t let it win, I fight like crazy. I think airplanes are fascinating machines. However, I am terrified of dying, not because I don’t want to die (which I don’t, life is pretty awesome and the unknown of death is scary) but I am afraid of what would happen to the people I love if I did. Would my sister be able to function? Who would call my Mom everyday at 4? Would someone else love Kevin like he deserves? And the thought of my Dad crying makes me want to cry typing this. I don’t ever want them to feel pain. I felt like a selfish jerk when I finally decided to reach out and get help for this because I felt like I saying I was putting myself before them. It felt like I had stopped their cancer treatment to keep them alive. It is that crazy talk again going on in my head… I wasn’t controlling keeping them alive or safe by doing the things I was, I was just falling victim to the anxiety.
When I was diagnosed at age 10, I was placed on medication. I saw a counselor and a psychologist. As I got older and with little understand of what was going on in my head I stopped the medication and therapy. I managed for a long time. I had the obsessive thoughts of people getting hurt and I tried to control it and sometimes I could. I basically just gave into the compulsions because they didn’t completely interfere with my life, they were just annoying and confusing. Then I got married. I was under “fight or flight” all of the time. I had stomach ulcers and bleeding and all kinds of issues. I ended up on anxiety medications during this time. When I left my ex-husband I stopped the medication and I was doing pretty well for about a year. Then anxiety let me know that it never left, I just suppressed some of it, but it showed it’s stupid ugly face again. I was crying a lot at night because I was so frustrated with myself for feeling anxious all of the time. I experienced many more funerals and watched people grieve loved ones. I have a very bad habit of putting myself in someone else shoes and then I get in extreme distress. If someone loses their Mom then I think of how hard it must be for them and then I think what if I lose my Mom? Then it spirals out of control. I started to get angry with myself because I am very aware of how irrational my anxiety can be. I was tired of feeling “crazy” for being worried all of the time.
I still struggle but I am aware of now. Sometimes I do not respond to people talking the first time they say something because my anxiety in my head was all I could focus on, it consumes me. I sometimes get frustrated if someone talks to me while I was stressing out about something because it is interrupting my obsession/anxiety and I was trying to work through it. I’ve snapped at people I love when this happens. I struggle with noise, I hate anything loud, it just makes me feel nervous. I hide from people in my room or in the bathroom sometimes, just because I need quiet for just a few minutes. I have found my own ways to cope with the anxiety at times. Sometimes I give myself a “timeout” if I feel like I am going over the top. I research things that make me anxious such as airplanes, weather, etc. This has helped me tremendously. The more I understand something, the less I am afraid of it. I have not conquered my fear of losing people I love, it still haunts me everyday but that is okay… I win more than I lose to anxiety! I 1,2,3 things when I am scared (read 1,2,3 go blog to understand this). However, I think the biggest thing that has helped me is talking about it and accepting it. I hid from this for a long time… 17 years! I was shameful, embarrassed, mad, frustrated, and basically any other emotion you could think of. It is not fair that I have to take medication to keep my anxiety levels lower. However, it is not fair for me to live in a state of panic 24/7 so I thank God for science to give me this relief so I can enjoy this beautiful life. No one has a perfect brain and we all fight our own demons. Be honest about them, most importantly to yourself, because with that comes the opportunity to live the life you deserve.
My Grandma & I