bookmark_borderWhat is OCD?

A black-and-white photo of a boy looking down, tears streaming down his face.  OCD is a painful anxiety disorder that causes major disruption and stress.
OCD is an anxiety disorder that causes major disruption and stress into a person’s life. Children, adolescents, and adults can develop OCD.
Photo by Kat Jayne from Pexels

Today I offer my understanding of OCD, Obsessive Compulsive Disorder. I am a lay person who does not have OCD. Hardly an expert. But I’d like to offer the other side to my previous post, What OCD is not . . .

Obsessions: persistent unwanted thoughts, images, or urges that intrude into a person’s thinking and cause excessive worry and anxiety.

Compulsions: hidden mental acts or overt behaviors performed repetitively to relieve or prevent the worry or anxiety generated by the obsession. Compulsions often have the intent of magically preventing some dreaded event or misfortune.

Some forms of OCD: checking, washing and cleaning, ordering and repeating, scrupulosity, hoarding, are common. Some compulsions can be completely internal. The person may have to visualize very specific things in a specific order to “neutralize” an obsessive thought or image. Some people may have rituals that they feel compelled to repeat to prevent a terrible disaster or even death.

To take an example that many people misunderstand– organization and symmetry. A person who loves organization and symmetry, like me, may keep their home and personal belongings well organized. They may set their table “just so.” They may have a specific way they load the dishwasher. They may line up their shoes in their closet in a special way.

If a person does these things because a neat and orderly home gives them pleasure and a messy and disorganized home makes them feel agitated, that is not OCD. It is difficult for me to go to bed with a messy kitchen because I hate waking up to a mess. No matter how tired I am, 99% of the time I clean my kitchen before I go to bed. But not because I am afraid I or someone else will die if I don’t.

A person with OCD may have an unwanted thought– “If my drawers are disorganized, my mother will die.” And then s/he will organize and re-organize their drawers, possibly for hours, until their brain tell them it’s enough, their mother is safe.

What does the organization of drawers have to do with their mother’s life? Nothing. And usually person with OCD knows this. Yet they cannot make the thought go away, nor can they resist the compulsion to act on it without very specific help.

Many people with OCD actually have quite messy homes because their compulsions take up so much time that they cannot complete what are known as the Activities of Daily Living (ADLs). They cannot move on from re-organizing their drawers, for example, to doing the dishes and brushing their teeth. Their day may be so full of hand washing and outfit changing, in an attempt to quiet down the thought that they will get sick from dirty hands and dirty clothes, that do not have time to shop for and prepare healthy food. They may not be able to exercise or spend time with friends. They may not get a good night’s sleep because they have to get up from bed thirty times to check that their doors are locked. And it all starts with unwanted, intrusive thoughts that something horrible will happen if they don’t. OCD tells them “you must do this to keep yourself and others safe,” but it is actually getting in the way of them having a safe, healthy life. And it often hurts the other people in their lives, too.

Some people with OCD become very skilled at hiding their symptoms. They are fully aware of how irrational their obsessions and compulsions are. They realize that everyone they know washes their hands a few times a day and doesn’t get sick and die. But they cannot stop the thoughts, they cannot stop themselves from washing their hands, over and over. They can see the cracks in their skin and see their hands bleed. They know that the cracks in their skin actually increase their risk of infection. And then they will continue to wash because the thoughts will not stop.

Someone who is trying to hide OCD may have excuses for no longer engaging in activities they used to enjoy. They may claim to be too tired, too busy, or trying to save money. They may openly exhibit symptoms of depression rather than symptoms of OCD. Depression can often be present, also, but the symptoms of depression can mask the symptoms of OCD, if the person is ashamed, as almost all sufferers of OCD are. Thus the mantra of everyone who loves someone with a mental illness, End the Stigma.

Most people with intrusive thoughts experience great shame associated with those thoughts. They are terrified to tell anyone the extent that these thoughts pervade their lives and the extreme nature of their thoughts. Some people have what is known pure obsessional OCD, sometimes known as Pure O. These are intrusive thoughts do not have an outward behavioral compulsion associated with them. Often the obsessions are socially and/or morally unacceptable. The person would never act on these thoughts and may come up with mental rituals to try and neutralize the thoughts. It take tremendous strength and courage to decide to get professional help. It takes even more courage for a person suffering from OCD to be completely honest with their therapist about their intrusive thoughts.

Of course OCD can range from mild to severe. Some people may have little OCD quirks. They seem inconsequential to the people around them. “Joe always checks his door three times before leaving.” What is happening in their mind is almost always more serious than the behavior appears, though. Just like any condition, getting help when OCD is mild is preferable to waiting until is has caused a major disruption in a person’s life. OCD rarely goes away on it’s own although it can wax and wane throughout a person’s lifetime. It tends to become more severe with major stress events (even positive ones, like getting married or getting a promotion) and hormonal changes.

Someone with OCD may “lack insight” and believe that their intrusive thoughts and compulsive behaviors are rational. This is a subset of OCD that I am less familiar with but it does exist.

I am so excited that my son will finally be getting help from a program specifically designed to meet his needs. They work with people like him every day. They’ve seen people set free! Once we are there, I will do my best to share our days as they happen. I want others to know help is available and I want to help alleviate any fears about what to expect. I’m not sure exactly what to expect, myself. I don’t know how intense the therapy will be. I don’t know how my son will react. But we will take it one day at a time.

Please comment below if you have any insight or personal experience to share that may help me or others understand OCD.

Talk with you soon.

bookmark_borderWhere we are going and why.

An older apartment in Chicago with exposed brick has been updated and decorated with modern furniture.  We will stay in something like this for several months for the OCD program.
I rented an AirBnB in Chicago for two months. I will be attending depression and anxiety (including OCD) treatment with my son at Rogers Behavioral Health in Skokie, Illinois. Photo by Chait Goli from Pexels

My teenage son and I are leaving in a week. We’ll be gone 3 months, at a minimum. We are heading to Rogers Behavioral Health for one of their PHPs (partial hospitalization programs). I will be leaving my 4 other children home with my husband, 2,000 miles away. It goes without saying that we would not go to this level of disruption and expense if we thought another option was viable. I found this program very recently and this all transpired very quickly.

The long and winding history will have to come later. Our autism story is not typical, at least not typical according to the literature (but I’ve met plenty of parents with a story similar to ours). But I’m going to start in the middle, as what is happening now, travelling for this program, is the reason for my blog.

The particular program we are going to is only available at 3 locations in the USA. Skokie, Illinois (a suburb of Chicago), Tampa, Florida, and San Francisco, California. It is a program to treat depression and anxiety disorders, including OCD, in adolescents with level 1 autism. If you have a teenager that fits even one of those criteria, then know that I understand the pain, exhaustion, frustration, and despair that you can experience on any given day. On any given day you may also experience great joy and hope. But, for those of us who love someone with depression and an anxiety disorder, the pain and despair take over our lives. We soon realize that this goes far beyond any idea of normal parenting. We are way out of our league. We lose the ability to relate to other parents who may argue with their teens about homework or screen time. We need help, professional help, and not just a counselor. Finding someone with specific training for OCD is incredibly hard. When that person is also autistic, the ability to find professional help gets that much harder.

When I was trying to find real help that would make a difference (50 minutes a week with a counselor just doesn’t cut it) I didn’t even know what to search for. Years of accessing everything that was available locally didn’t help at all. And our son was drifting farther and farther away, to the point where we were feeling like we might never reach him. He was giving up hope, also, of ever living a life that held meaning for him. OCD and other forms of anxiety were taking over. Local counselors cared but talking about it did nothing but bring on a weekly battle to get him in the car to go. Medications helped some with the severity of his depression and have kept our son out of the emergency room. I was calling every single counseling and psychiatric clinic within a 100 mile radius of our home and not finding anything other than 50 minute weekly appointments. And 90% of the places I called said, “I’m sorry, that is beyond the scope of our practice.” There is an idea that if your teenager has problems, and they get accurately diagnosed, that help is available. It is not, or at least it’s not readily available. Regular counseling or even regular CBT is simply not enough to treat OCD. Regular counseling is not enough to treat depression in someone who is autistic. I would sink in despair, realizing how truly alone I was and how utterly incompetent I was to help him with these complicated disorders.

My son’s world was getting smaller and smaller as he lost interest (or couldn’t get past the anxiety) in things he used to love. He rarely left the house. In some ways, it was a relief because I could take my other children places without worrying that this particular son would have a meltdown in public. But this wasn’t the life we wanted for him! My world also became smaller and the number of friends I could truly confide in shrank drastically. Only two friends have an idea of the severity of my son’s disorders. My marriage has also suffered. My husband often placed blame on me for not “doing more” or “handling things better.” I had to become a buffer between my son’s irrational behavior and the rest of the family. Loneliness became a way of life. I no longer had any personal dreams or aspirations. No thoughts about what I’d do when I had an empty nest. My sole purpose in life became to see this son reach some level of health and wholeness. Then I’d be okay to die.

Then I found Rogers Behavior Health and their program specifically for Depression, Anxiety (including OCD!) for autistic adolescents. Rogers has an incredible reputation for treating OCD and eating disorders across the country. Yet I was very nervous about this program. The program is 6 hours per day, 5 days a week, for 6-12 weeks. I was told that the average program runs 8 weeks. We would have to travel and pay for housing almost 2,000 miles from home. I would miss so much with my other kids. I’d miss my friends, my home, and whatever was left of our routine (OCD often calls the shots without professional help). Would I cause all this disruption and spend all this money just to come home no better off? Would he even be accepted?

If you’ve read this far, you may know what it’s like. I just had to try. I couldn’t keep going on year after year hoping things would improve. Hoping that a little more maturity would help. Hoping that maybe occupational therapy, medication, and counseling would actually bring about a big change. I had to come to grips with the fact that every year was harder than the year before, that the 3 supports we had in place could take him no farther without more specialized help, and that we just had to give this program a try.

So, we’re heading to Chicago. I have an AirBnB booked for 2 months. (I was told the average person spends 8 weeks in the program. If it turns out we have to stay longer, we’ll figure it out when the time comes.) We have to quarantine for two weeks before he can start and we’ll do that at a family member’s empty house (they graciously offered to delay the sale of their home by 2 weeks so we could do this). And the drive is 3 days each way. So, we’ll be gone for 11 weeks, minimum. We’ll miss Halloween and Thanksgiving. But I’m very hopeful we’ll come home with our boy back.

OCD is a thief. It tries to take your whole life away. It isn’t about liking things neat and orderly. It isn’t about being meticulous or detail-oriented. It isn’t about a very strong preference for symmetry and organization. OCD is a disorder the destroys individuals and families. And we’re going to kick it to the curb in Chicago and leave it there.

If you have a child or loved one who suffers from any combination of depression, OCD or other anxiety disorder, and/or is autistic and really struggling, feel free to read along with our journey. If you comment, I will do my best to reply. Know that YOU ARE NOT ALONE. Your pain is real and you are worthy of help. Talk with you soon.