Most of us have an excellent understanding of obsessive compulsive disorder (OCD) when it stands alone; we recognize the frequent hand washing, the placing of items all in a perfect row, the emphasis on evenness and fairness. These indicators aren’t incorrect. Yet when OCD is comorbid, or present at the same time as Tourette, it presents quite differently and in ways most would never expect. The obsessive thinking associated with the disorder can become the more common aspect and, often, the cause of anxiety and depression in individuals with Tourette. These symptoms include something that many with Tourette suffer, yet feel embarrassed or afraid to talk about, “intrusive thoughts”.
Intrusive thoughts or intrusive images are unwanted and sometimes troubling thoughts or visuals which show up in a person’s mind. They frequently contain unpleasant aspects, which can include sexual or violent themes and can be frightening and overwhelming. Because they don’t understand what’s happening or they are afraid of what people will think, children often don’t speak about these thoughts or images, leading to an even greater amount of anxiety. If they do open up, parents have little information on exactly what these are, why they happen or how to help their children cope with them—the parents themselves might be worried or embarrassed about what these mean.
“For me it’s like having a song stuck in my head,” said Stephen*, an adult living with TS. “However, instead of a pleasant song that makes you feel relaxed, it’s something that fills you with dread.”
“Like an image of your own death or seeing someone you love dead or injured,” he continued. “The mental strain I use to try and get rid of the ‘song’ leaves me frustrated and upset. These images or thoughts plays on my darkest fears…on things I feel horrible about and my mind won’t let me escape it.”
Mike, a teenager with Tourette, described his intrusive thoughts with bitter emotion. “These thoughts just take over,” he shared. “The ‘I’m definitely going to die now’ thing just takes hold, or I hear myself think that things would just be easier if I were gone…if I killed myself. I don’t want to die, and I’m not suicidal, but it’s almost like my mind is a different person talking to me. It makes me angry and miserable.”
“I absolutely thought my parents were going to die,” said Evan, a twelve year old with TS. “When I was in second grade I would cry anytime I couldn’t be with my parents. In my head I kept seeing them dead and I thought if I just kept them by me nothing bad would happen. Every morning before school I would have these huge meltdowns in the parking lot and refuse to go in. It was really a bad time. But eventually my parents got a cell phone and the school let me keep it with me. That helped because I knew as long as I could text them when the images would come into my head and as long as they answered everything was okay. It doesn’t happen much anymore, but when it does I still text my mom or dad or I go play on my x-box and that helps.”
Distraction is a theme many use to cope. The technique is surprisingly effective, allowing for the interruption of negative thoughts by engaging in a more positive, absorbing activity.
“Honestly, distraction is the only thing that helps me,” said Catriona, a mom of three who has Tourette. “When I was having intrusive suicidal thoughts, that was the most intense ones that I’ve had, all I could do was watch Scandal for hours and color in my adult coloring book. The suicidal ones can be scary at first and it took me a little while to figure out that they probably didn’t mean I wanted to kill myself.”
For less dangerous intrusive thoughts and images she said she often substitutes an activity for each thought. “I find cleaning and organizing things very centering. Since the intrusive thoughts aren’t useful, I try to replace them by doing something “useful” but which doesn’t involve a lot of complicated thinking. I take control. I decide to interpret the intrusive thoughts as meaning that my anxiety level is very high and I can then do things to address the anxiety.”
Jessamine, a mom and advocate, had a similar approach to helping her children deal with the upsetting images and thoughts. “We do this thing where the kids will draw a picture of the horrible thing they are imagining, and then we draw over the picture things that fix it,” she said. “Corks to cover the spikes of a deadly monster, sunglasses to cover Voldemort’s eyes, birthday hats and baby pacifiers on terrorists and zombies, bandaids over cuts from knives or doctors, changing the look on the face of the person in the drawing, wings on someone falling, boats where they land after jumping off a waterfall. We even change it from them dying to them being helped by someone they love or adding wings or springs on their feet to jump away from the bad guy or situation!”
“I call it “adding to the intrusive thought”,” said Jessamine. “I say the intrusive thought is no more real than the stuff we add to it to nullify the fear. We practice it in our mind too when the thoughts come up at random. For the awful repeat ones, the picture (which is really art therapy) truly helps.” After the children have completed the drawing there’s one final step, “when all is said and done, we rip the picture up and throw it in the garbage to represent how real it isn’t…that we can literally just throw it away.”
In the days before he understood his symptoms, Stephen found himself hiding in his room.
Change of Environment
“I’m trying to change that habit,” he said. “I go outside now and find that being in nature is quite helpful.”
Several others we spoke with echoed this sentiment. “Feeling the sun on my arms, walking in the woods or being at the beach remind me that nothing bad is happening in that moment and help me keep focus,” said one.
Another added in physical activity to keep his mind clear, “I find that exercise helps, especially if I do an activity outside where I can be in brightly lit, natural surroundings.” He jogs through a local park in the mornings as a way of staying on track mentally. Mike said that while exercise and being outdoors helps him, his biggest help is watching videos or playing video games. “It doesn’t take any thought for me to do these things and I can force myself to clear my mind and try to relax.”
Meditation was also mentioned by many who say they find the daily refocusing of their mind helpful. Yet, for some, distraction or other coping mechanisms simply don’t work. Instead they find that other therapies such as Tapping, Eye Movement Desensitization and Reprocessing (EMDR) or Cognitive Behavioral Therapy (CBT) work well. Still others find that medication is their best option. Several physicians we spoke to mentioned Selective serotonin reuptake inhibitors (SSRIs) as working effectively with these types of OCD symptoms.
Importance of Education
Regardless of what specific activity we heard about, the one sentiment that was mentioned repeatedly was that learning about their condition was imperative. According to nearly everyone interviewed, finding out they weren’t alone helped reduce their anxiety and fear; knowing that the thoughts and images were part of OCD gave them hope that there were ways to deal with them. Catriona said she reminds herself of this as often as possible.
“Intrusive thoughts are pretty much never about what they seem like they’re about. They’re just a symptom of something else – and they’re just tapes playing over and over. Something I said to my kids the other day – you are not your anxiety. And anxiety doesn’t get to make the decisions for you.”
*Some of the names have been changed to protect the identity of those who contributed to this post