This new acronym has become a part of our daily language in our battle against Chloe's OCD relapse.
S-U-D-S
It seems like such a harmless little word, like a bunch of cute little sudsy bubbles.
Don't be fooled!
It's the opposite of cute. In OCD world, SUDS stands for:
Subjective Units of Distress Scale
and it rules/dictates our lives at the moment.
High numbers are BAD. BAD things happen when SUDS are high in our family.
Spend some time with our family and you will constantly hear things like
"What are your SUDS?" "How are your SUDS?" "Where are you on your SUDS?"
Similar to a pain scale, our SUDS are without the extra zeroes in the picture, just 0-10.
Chloe uses the scale every day while completing her hours of ERP exposure response prevention at the clinic, and then during her exposure homework at home. And we also ask her at bedtime which is when OCD gets bad, and SUDS get high. We all have a plan that we now know very well and implement those things which I will talk about later.
If you remember from our first time I blogged about treatment, exposures are what Chloe does to intentionally place herself in a situation where she is likely to feel vulnerable to a perceived threat.
Response prevention means that she must engage in the exposure with absolutely
NO NEUTRALIZING BEHAVIORS.
Exposure based therapy aims to turn avoidant behaviors into opportunities to intentionally approach situations perceived as a threat. The goal is a natural reduction of distress over time with exposure to the perceived threat. Each time Chloe intentionally exposes herself to something , her alarm system/brain learns that it's safe and not worthy of alarm.
Kate has created a hierarchy of exposures that starts with small exposures and gradually getting harder and bigger. Chloe spends one, sometimes two hours each day in IOP with a Clinical Assistant doing her exposures. As she performs an exposure, she tells the CA where she is on her SUDS. It's usually high at the start. As she continues intentionally exposing herself to that threat, her body starts to learn that there really isn't any danger at all, and the alarm begins to lesson. SUDS numbers are lower. When SUDS are consistently low for that particular exposure, she moves up to the next level on her hierarchy.
First exposure on the hierarchy for Chloe was making origami.
For a person without perfectionism OCD, that seems so ridiculous, doesn't it? But learning to fold origami involves lots of mistakes, and making mistakes is a perceived threat that causes Chloe's brain to set off the alarm system. After creating origami for hours and hours, days and days, eventually the alarm system in the brain figures out that there really isn't any threat there. SUDS go down.
Next step, she had to learn to crochet.
Once again, she wasn't perfect at it. Lots of mistakes. SUDS were high at first. After hours and hours of crocheting, SUDS got lower and that level of the hierarchy was complete.
Next step she had to do speeches in front of the CAs. They had to be off-the-cuff unprepared two minute speeches without any pre-preparation. Feeling like she isn't smart enough is one of her most prevalent intrusive thoughts. She is a lot like me - we are smart but we need to take our time and work hard at getting good grades. Kids at school are almost always making comments on other kids' grades and/or how long it took someone to finish, or how easy/hard the assignment was. These kinds of comments are almost always grabbed onto by obsessive intrusive thoughts of not being good enough, not smart enough, not fast enough, not a good speller.
These exposures brought her SUDS higher initially and took much longer to get to a lower level. But,
SUDS were high....eventually SUDS got low.
Next step, she had to debate with the CAs at the clinic and family at home about things she didn't know much about, and which the other person knew a lot about. No pep and she didn't get to choose the topic.
Now she is currently working on learning songs on the ukulele in front of the CAs. You make lots of mistakes when you learn a new song. She's been doing this one for quite a while, but as a bonus is getting awesome at playing the ukulele!
She is getting close to completing her hierarchy for the theme of perfectionism. Her body is learning that there is not a cause for distress and alarm when mistakes are made. The top exposure on her hierarchy is participating in a spelling bee with the CAs. Graduation may be around the corner.
We are super proud of her. She has been zooming through IOP this time because this time around she trusts the process, is willing, and wants to get better so she's doing the work with a good attitude and killing it! In that way, it's much easier this time.
But the bad thing about mental illness is that you can't always SEE the hard work or improvement in a physical sense. If Chloe was in rehab and learning how to walk again, everyone could see her struggling to take steps over and over and over again. You could see her legs getting stronger and beginning to work again. People would be cheering her on and celebrating every little milestone and victory.
In her OCD battle, we can't physically see just how hard the work is that she is doing but let me tell you, after doing a few exposures myself and experiencing the level of distress and strength it takes to get through them, Chloe is my freakin' HERO. And the fact that she does them for hours every day and then comes home and does more...and still participates in normal life with a degree of pleasantness is mind boggling. It is a testament to her will and character.
Chloe's OCD and fears used to seem so strange to me, but when I think about it we all have unreasonable fears in some way or another. They may even rule our lives without us knowing it. For example,
The other day I had a situation where I felt very anxious. My bedroom was a disaster and I had to take a proctored online exam for school in there. Before taking the exam, I am required to show all four walls of the room with the webcam to prove that I don't have access to any materials with which I could cheat. The thoughts of anyone seeing my exceptionally messy bedroom made me SUPER anxious and ashamed.
Because I admire what Chloe is doing so much, I have been trying to join her in doing exposures myself. I don't want to expect her to do something I'm not also willing to do. So I decided that I would do an exposure and NOT clean my room before taking the exam.
I also was NOT allowed to do any neutralizing behaviors which meant I couldn't apologize for the mess, explain that I am really a clean person or make a joke about my messy room to the exam proctor which is what I would normally do to try and make myself feel more comfortable.
As I showed the proctor my room, I was surprised at how high my SUDS levels were. I would say a 5 or even a 6 because I had physiological symptoms from the anxiety I felt facing that fear. I got warm and very sweaty. Afterwards, I was breathing heavier than usual and felt a little wiped out emotionally once the exposure was over.
It seems like such a dumb thing but it challenged core beliefs that I have developed about cleanliness reflecting my worth as a person. And allowing someone to see that made me vulnerable to judgment.
I worried that the proctor would make a comment but she didn't even care.
What do you know? The world kept on turning and there really was no danger. Letting others see my weakness wasn't really cause for alarm, but I also recognize that I would have to do something like that many more times in order to change that anxious reaction and core belief.
I also did an exposure at church this week. I feel very self conscious about my new 40-something body and my "fat arms". I usually wear three quarter sleeves to cover my upper arms because I think they look disgusting and I'm embarrassed by how much weight I have gained. I wore a dress that reveals my upper arm area and didn't wear a sweater over it. I noticed that while I sat in church I wanted to keep my arms down to hide them but I remembered NO NEUTRALIZING BEHAVIORS so I deliberately put my arm around my husband and kids, allowing the entire congregation full view of my fat arms.
It was uncomfortable, but guess what...no one said anything to me and the world kept turning. Hopefully I will keep putting myself in these situations and my brain will realize that letting people see my "fat arms" is NOT cause for alarm and anxiety.
Lastly, I did an exposure at the gym this week. I took a yoga class fully knowing that I had a hole in the butt of my leggings. You can really see it because I wear white undergarments and the leggings are black. I was going to throw them away because of the hole but decided to wear them as an exposure. I must admit, sometimes the distress would get to me and I did a neutralizing behavior by tying my jacket around my waist to cover the hole.
Not doing neutralizing behaviors is HARD!!! It takes will power!
But then I would think, "No! Chloe has to do this so I can too" and I would take the jacket off and deliberately walk in front of people.
It was uncomfortable for sure but ...what do you know? No one said anything and the world kept turning. Having a hole in the butt of your pants isn't cause for anxiety.
Even though I don't have OCD, this whole experience has really got me thinking about how much of my life is held back by fears - reasonable or unreasonable it doesn't really matter.
I mean, I only have to go to a public pool to realize that there is a whole plethera of people that don't let the fact that they are overweight stop them from prancing around in a bikini and they don't even think twice about it. They are having fun with their families without a care in the world and I'm too worried about covering the parts of my body that aren't in shape anymore to enjoy myself.
How many times have I not invited someone over or inside my home because my house wasn't tidy? Or stressed out about cleaning my house to perfection before we go on a trip or have guests over? How many times have I apologized for my house not being tidy?
How many times have I felt distress because I spilled something on my shirt during the day and tried to cover the stain or apologize for it?
That's TOO MUCH ENERGY spent on fears. I don't want to do it anymore.
I think of my small experiences then I think of Chloe and how much more intense these feelings are for her, and how much more the anxiety and intrusive thoughts affect her life and I feel so much compassion for her suffering. I also feel so much admiration for her willingness to put herself through distress on a daily basis in order to get better and hopefully prevent relapses in the future. On top of all of this, she still takes time to help the other youth in treatment along while just taking care of herself is A LOT to handle.
I'm really REALLY proud of my girl.
What fears do you have that are holding you back from your best life? Or even just regular life?
What are your neutralizing behaviors?
For those of you without OCD, I challenge you to try doing an exposure without any neutralizing behaviors. Rate your SUDS levels after doing it. I think it would be awesome if anyone even wanted to share their experience with me or Chloe.
Next entry, I'll post some of the strategies the clinic is teaching us on how to handle those anxious feelings when our SUDS are high. It's good stuff.
Until then...thank you again to everyone who has been sending their love and support. It means the world to us and lifts us up. We love ya!
