This week, are are so honored to share the true story of Deborah, who battles OCD with a witty sense of humor and a kind heart. Deborah’s post below originally appeared on her personal blog, but it has been reproduced with her permission
This is what my life looks like on Facebook.
I have a good family. I have good friends, and together we paint, explore and laugh far too much. I studied abroad and traveled across Europe. I was offered a job at a top newspaper before I graduated early from a top journalism school. It’s a delightful life, surely.
This is what my life looks like on Instagram.
I surround myself with good books, good friends, good food and puppies. I paint, fly, enjoy nature and can color inside the lines. Again, surely a delightful life.
What you can’t see, though, is how much hand soap, hand sanitizer, dish soap and sponges I go through. You don’t see the number of meals I’ve skipped, the collection of vague excuses I decline invitations with, the relationships that have become strained under the pressure of constant anxiety. You don’t see the feelings of weakness and unworthiness for being a college-educated adult who works full-time and pays bills and who, regardless of science, regardless of how irrational it seems, cannot shake the fear of the world’s endless sources of contamination and consequences.
What you can’t see is my obsessive-compulsive disorder.
I am what you would call a neat freak, but tidying isn’t a compulsion I need to cope with my anxiety; it’s a side hobby. It is hard to hear others say something like, “Lol, I’m so OCD about my pens” because OCD is already misunderstood and stigmatized. Treating OCD as a laughing matter makes clear and honest communication about this very real disorder, with its own category in the Diagnostic Statistical Manual, Version 5, difficult. My case of OCD is moderate. Others, though, are severely affected by the disorder.
Some take their own life because of it.
Please, please, please, do not casually joke about OCD.
OCD is a tricky disorder, and its exact cause – genetics? brain chemistry? brain anatomy? – isn’t known. The International OCD Foundation estimates that at least 1 in 200 children and teenagers have OCD and that at least 1 in 100 adults do. Anyone can develop it.
It’s an ironic disorder, OCD. It’s basically the least helpful coping mechanism the brain has developed. There’s an intense fear, sometimes learned, that does not leave you alone. Your rational senses are giving the all-clear, but you can’t believe it because the alarm is still blaring in your mind: You are not safe.
I’ve dealt with anxiety for as long as I can remember, and I think my family and teachers expected me to outgrow it. OCD usually manifests between the ages of 8 and 12 or in late teenage years and early adulthood. When I was 16, I started to get physically ill when too stressed or (in a cruel twist) excited. Holidays, travels, celebrations were plagued with such preemptive dread that I physically could not bear it. It was as if my body was betraying me, and no one knew why or how to stop it.
Maybe, if I could control what I ate and what I touched and where I went, I could control my body’s intense reactions to stress. Everything uncontrollably irrational spirals from there.
Freshman year of college the hardest year I’ve been through. Friends and classmates seemed to revel in new-found freedom while my life was dominated by fear. Avoidance was my primary strategy: Avoid crowds, new food, any semi-stressful socialization in case I ended up succumbing to the constant stream of anxious and intrusive thoughts and having a breakdown.
I knew I was not OK. I went to the university’s counseling and wellness center, and after about a month, I was told my case of anxiety was too much for the psychologists there.
I don’t know if it was habituation to the anxiety, but sophomore year was an improvement. I was still dependent on avoidance, and eating was still sometimes difficult, but there were fewer breakdowns, more engaging classes and new friendships. By junior year, I felt steady enough to study abroad. Life in Paris was a fun, not-so-terrifying adventure that was empowering and comforting and, in hindsight, desperately needed.
I returned to the States calmer and more confident. I graduated a semester early and I started my first post-grad job. Life was fine for the first year.
And then familiar feelings of dread crept up, ones that had existed before my obsessions focused on contamination. There could be a car accident if you take this road. That twinge in your side could be the beginning of appendicitis. Are you sure your parents are all right?
At my annual physical, my doctor referred me to psychiatry. A psychiatrist referred me to a partnering clinic. And seven years after turning 16, when I first knew something was wrong, I was diagnosed with obsessive-compulsive disorder.
I was lucky: It can take an estimated 14 to 17 years between OCD manifesting and being properly diagnosed and treated. And I have amazing therapists, ones who push me to widen my comfort zone but who don’t push so hard I panic. And after our first session of exposure-response therapy, in which I touch things I wouldn’t have dreamed of touching and repeat that I am in fact touching things I wouldn’t have dreamed of touching until my anxiety levels go down, I trusted them completely.
Therapy can be hard. But facing some of your greatest fears, ones so ingrained for so long that they seem to protect you from everything terrifying in the world, is hard. And it’s needed. And it is helping, so much.
It’s OCD Awareness Week. The more we talk openly and honestly about OCD, the less those with mental illness feel the need to hide behind facades and Facebook posts to dodge the stigma. It becomes easier to seek needed help and faster to find needed treatment. And I am so relieved to have found a treatment that is making a difference.
Full disclaimer: I am not a professional any medical or psychological field. But here are some tips.
IF YOU ARE CONCERNED ABOUT YOUR MENTAL HEALTH:
Never feel like your concerns are invalid. You know when something’s not right. Trust yourself above anyone else.
Please talk with someone who has mental health training. A doctor, a therapist, a counselor, a hotline. People can and will help you.
Be kind to yourself.
Know that it is not your fault. It is a very, very difficult thing to believe sometimes. I still struggle with it. But mental illness is physically and emotionally complicated, far too complicated for it to be on you. It never has been and never will be your fault.
Surround yourself with people you love.
If you are having suicidal thoughts, please go to someone you trust or call the National Suicide Prevention Lifeline (1.800.273.8255). People are on your side. I’m on your side.
IF YOU ARE CONCERNED ABOUT A LOVED ONE’S MENTAL HEALTH:
Do not try to diagnose them.
Encourage the person to see a doctor.
Listen, or offer to listen. Let them make the first move from there.
Know that it is not your fault. Every mental illness is too complex to stem from one cause. No one is at fault.
Know that, with certain mental illnesses (like OCD), your loved one is aware they might act irrationally. Please, don’t turn your back on them when nothing seems to make sense.
IF YOU’D LIKE TO LEARN MORE ABOUT OCD:
Check out the International OCD Foundation’s website.
Check out the National Alliance on Mental Illness’ website.
Listen to NPR’s interview with David Adam, a science writer who has OCD.
IF YOU’D LIKE TO RAISE AWARENESS:
You can take the IOCDF’s pledge to advocate for OCD and related disorders.
Use the hashtag #OCDvocate on social media, and learn how to get involved with the IOCDF here.
Start talking whenever you’re ready. Ease into it. Do what feels comfortable.
— Written by Deborah S., edited by KIT staff.
Deborah copy edits for The New York Times’ Editing Center, ironically in Florida. Hobbies include reading, running (jogging (speed walking?)), leisurely practicing French, stepping up her Twitter game, and learning to cook.
Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.