For those of you who have been following my blog for a while, it’s no secret that my son Dan had negative experiences with medication used to treat his OCD. He was overmedicated, wrongly medicated, and improperly weaned from various combinations of ten different medications over a fifteen-month period. Medication didn’t help him; it hurt him. For him, the best meds turned out to be no meds at all.
There are, however, a good number of OCD sufferers who are helped by medication (usually in combination with Exposure and Response Prevention therapy). But even for those who benefit from taking medication it is often a long, frustrating journey to find the right medication, or combination of medications, that work. We’ve all heard it before: trial and error is the only way to find that often elusive “right combination.”
But is trial and error really the only way?
In this detailed blog post, DeeDee writes about her experiences with genetic testing to evaluate medication sensitivities. According to her, this look into your DNA is typically covered by insurance when approved by a doctor, and results were reported to her in three categories: Analgesics, Psychotropics (antidepressants, antipsychotics), and ADHD medications. In this interesting follow-up post, DeeDee is happy to report that, with the help of this genetic testing, she is now taking the right combination of medications.
I am not endorsing this genetic testing, as I really know nothing about it. But I love the idea! Instead of being human guinea pigs, OCD sufferers (and those who suffer from other brain disorders) could have their cheeks swabbed, and then be presented with a report detailing what drugs, and dosages, might be helpful, what drugs might not work, and what drugs should absolutely be avoided. This sure would have saved Dan (and us) a good deal of suffering.
When Dan was going through his various medication trials, I remember thinking that it seemed like such a primitive process. In this day and age, with all the advances in science and medicine, shouldn’t there be a more sophisticated way to determine what medications might or might not work for a particular person?
If you are in the midst of “trial and error,” you might want to ask your doctor about genetic testing, and/or learn more about it on your own. And if it is something you decide to pursue, please let me know how it goes. Fighting OCD can be tough; if there is any way to ease the battle, I want to spread the word!
Because my son has OCD, many of my posts focus on a parent’s perspective; what are the best ways we can help our children? But what if you are the child, and your parent is the one struggling with the disorder?
Of course, the issues children and their families face will differ depending on the ages and personalities of the children, as well as each particular situation. But no matter what their age, I think children need to be educated as to what OCD is and how it affects their parent. Good therapists can help provide age appropriate information, whether the “child” is four years old or forty.
Anyone who has ever lived with someone who suffers from OCD knows it is a family affair. Children naturally want to please their parents, and will likely accommodate their parent with OCD to make them feel better. “Yes, Mom, you definitely turned off the stove,” an eight-year-old son might say, over and over. This child is doing what any of us would do in this situation, unless we were educated about OCD. He is reassuring someone he loves. Perhaps another scenario might involve a young daughter helping her dad check all the doors in the house to make sure they are locked. In this case, the child actually participates in the compulsive behavior. In yet another example, a teenager might just avoid getting her driver’s license, because her mother is terrified she will get in an accident.
As outsiders looking in, it’s not hard to see that these various possibilities might have detrimental effects on children. Children mimic their parents. While this does not necessarily mean they will go on to develop OCD, it wouldn’t be surprising if they, at the very least, developed into anxious adults.
I don’t have OCD, but I’d like to think if I did, witnessing the effects the disorder might have on my children would be a huge impetus to get treatment. Also, a parent with OCD has the opportunity to be an amazing role model to his or her children. We all have our struggles, and our children will as well. What better way to teach our children how to deal with these struggles, than to face them head-on ourselves! The lessons here are valuable, to name a few:
It’s okay to admit you have OCD (or any illness, problem, hardship, or pain); talking about our issues, not keeping them secret, is the way to go.
There are people who can help you (and your family) cope and get better.
Treatment is seldom easy, but it is worth the fight to regain your health and well-being.
You will always have the support and love of your family.
Of course, there are times when a parent does not choose treatment, and in these cases, I think a lot of care and attention must be given to the children in the family. A good lesson in this case is that while we can’t control the behavior of others, even those we love, we can choose how we respond to them. We need to be able to live our own lives. Support groups might be particularly helpful in these situations.
If OCD is controlling your life, and you have children, then it is affecting them as well. (I haven’t forgotten about spouses and partners; that will have to be another post). I hope you’ll make the choice to stand up and fight your OCD, for you, for your children, and for your entire family.
This post is originally from December 2011.
An interesting article recently appeared in the Wall Street Journal. “A Serious Illness or an Excuse” is worth reading and talks about what is happening on college campuses across the country: The number of students requesting accommodations has skyrocketed, and more of these students than ever have some form of documented mental illness. While OCD in particular is not mentioned, the fact that it is the fourth most common psychiatric disorder is evidence enough that it is present on college campuses.
The article touches on various issues that arise as a result of so many students needing services. Schools are left to figure out how much and how best to accommodate students with documented disabilities. Who should make these decisions – faculty? individual teachers? counselors? disability coordinators? And what about those students without documented disabilities who request help? Most likely some of them are indeed suffering from some form of mental illness and have not yet been officially diagnosed, and it is also likely that some students are just trying to take advantage of the system: Get a slip from the counseling center and avoid taking that exam you neglected to study for. There are lots of different scenarios and it is up to individual colleges to develop policies to deal with them.
While laws governing special accommodations in public elementary and secondary schools can be quite detailed, colleges and universities are left to develop their own guidelines within the framework of the ADAA which basically states that these students cannot be discriminated against.
So where does this leave those with obsessive-compulsive disorder? We already know that OCD is complicated and often misunderstood. While therapists can make recommendations for accommodations, the truth is that sometimes those with OCD don’t know what they need until after the fact. Maybe while reading for a literature class, someone with OCD gets “stuck” on a page and can’t continue on. Maybe paying too much attention to detail and not enough to the big picture causes problems in another class. These situations can be hard to plan for and might come across as made-up excuses to those who don’t understand. Typical accommodations such as extended deadlines and untimed testing might actually be hurtful, not helpful, to those with OCD.
As more students with documented cases of OCD are sure to arrive on campuses, I envision this problem getting worse before getting better. This is just one more reason to continue advocating for OCD awareness. The more everyone understands the nature of this insidious disorder, the more they will come to realize that the best accommodations for those suffering from OCD just might come in the form of open-mindedness, support, flexibility, and trust.
For those who think they, or a loved one, might be suffering from obsessive-compulsive disorder, it is easy to go online and find a list of typical symptoms.
In some cases, people’s obsessions and compulsions might be quite obvious and they will present with a “classic case” of OCD. Sufferers who fear contamination (obsession) and wash their hands until they bleed (compulsion) are a good example.
But it is not always that easy to figure out if you or someone you care about has the disorder. Some symptoms of OCD may not seem like symptoms of anything at all. For example, at least a year before we knew my son Dan had OCD, he stopped choosing what clothes to wear in the morning. “Just pick out anything for me; I don’t care what,” he’d say. While I may have thought this behavior was a little odd for a teenager, it never once crossed my mind that Dan was consciously avoiding making decisions. I now know that this is not an uncommon symptom of OCD. If Dan didn’t have to decide what to wear, or what movie to go to with friends, or give his opinion on anything, then he would not be responsible for anything bad that might happen as a result of his decision. As I’ve said before, while intellectually Dan knew his thinking made no sense, there was always doubt, another mainstay of OCD; “What if I wear my blue shirt and then someone I love dies?”
Reassurance seeking, such as asking “Are you sure everything is okay?” is a common compulsion in OCD. As a matter of fact, when Dan entered his residential treatment program, cell phone use was discouraged because so many clients would continually call home for reassurance. I told Dan’s social worker that he never asked for reassurance, and that was true. But what he did do was routinely apologize for things most people would never apologize for. He’d say things such as “I’m sorry I spent so much money at the supermarket,” (when he actually hadn’t) and I’d answer, “You didn’t spend that much; you have to eat.” Now it is easy for me to see that Dan’s apologies were a form of reassurance seeking and my responses to him were classic enabling.
Of course a lot of people avoid making decisions, and I’m sure just as many are always saying they’re sorry. I am in no way suggesting they all have OCD. What I am saying is that OCD can manifest itself in countless ways; no two OCD sufferers will have exactly the same symptoms. Couple that with the knowledge that there are still lots of therapists out there who are not that familiar with OCD symptoms and treatment, and you may have the makings of a difficult diagnosis.
And so this is just one more reason to continue to advocate for OCD awareness. The more knowledgeable we all are about the signs and symptoms of OCD, the better position we will be in to fight the disorder head on.
This post is originally from November 2011:
When my daughter was about two or three years old, she had a bedtime ritual where she lined up ten of her dolls and stuffed animals on the floor. They had to be in the right order, at the right angle, touching or not touching each other in a specific way. If these “friends” were not arranged just so, she would get upset, and then have to adjust each and every one of them until she got it just right. Then she could go to sleep.
And she doesn’t have OCD.
Rituals are a normal part of childhood, and they play an important role in children’s overall development. Rituals create order for children as they grow and try to make sense of the world around them. For example, a bath, story time, and cuddles every night before bed give children structure and a sense of security. They feel safe; they know what to expect. Everything is as it should be.
Wow. Rituals never sounded so good. So how could something so wonderful cause so much distress?
Typically, children without OCD will be soothed and comforted by their rituals, whereas a child with OCD will experience only a fleeting calm. Anxiety and distress will always return, and the child will feel compelled to complete the ritual again. As I discussed in this previous post on rituals, this feeling of “incompleteness” is a telltale sign of OCD.
Another thing to watch for if you think your child might have OCD is the amount of time he or she spends ritualizing, and how much it interferes with his or her life. Typically, spending an hour or more a day completing rituals should raise some red flags.
Diagnosing OCD in young children is not always easy, as there are many ways the disorder can manifest itself. And OCD is tricky. Just when I was really starting to worry about my daughter, she began to care less and less about the arrangement of her “friends.” On the other hand, my son, who has never lined up anything in his life, developed OCD.
Recent research suggests that OCD often begins in childhood. I know this is no surprise to a lot of people, as I’ve often been told, “I’ve had symptoms of OCD for as long as I can remember.” I’d love to hear from those with OCD. When did you first realize you had the disorder, or that something was wrong? What were your “early” symptoms like? How did your families react? Chances are the more we share, the more people might see themselves or their children, and seek help.
I’m going to continue sharing some of my older posts for the next several weeks. This one is from November 2011:
Most experts agree that it is time to seek treatment for OCD when the disorder “interferes with your daily life.” While “interfering” can mean different things to different people, it is generally described as having obsessions and compulsions that take up more than an hour a day of your time.
While a lot has been written about recovery avoidance in OCD, what I’m talking about here are cases of OCD that are not so severe. Many sufferers and their families will avoid even discussing treatment because it appears that the situation is just not ”that bad.” Of course, because OCD sufferers can be so good at hiding their symptoms, they are often the only ones who know the real extent of their disorder.
To me, before things get “that bad” is a perfect time to seek treatment and get started on Exposure and Response Prevention therapy. The less entrenched OCD is, the easier therapy will be. OCD rarely goes away on its own, and the longer treatment is delayed, the more time OCD will have to latch on to its victim, making recovery even more difficult in the future. Remember that OCD is an insidious disorder that does whatever it can to undermine the sufferer’s desire to get well.
The decision to seek treatment for OCD is sometimes shrouded by fear, shame, and embarrassment, and it may just seem “easier” all around to ignore what is going on. I think this is a huge mistake. If you suspect you have OCD, are concerned about a loved one, or aren’t really sure what’s going on, please make the effort to find a therapist who specializes in this disorder. The sooner the better, because it might not take long for “I can handle this” to turn into OCD calling all the shots.
This week I’ll be sharing one of my more popular posts from September 2011:
OCD is often described as “the doubting disease,” but what does doubt have to do with obsessions and compulsions?
In an article written for OCD Chicago, Dr. Fred Penzel he explains:
If obsessions are intrusive, unpleasant thoughts, compulsions are the mental and physical activities that people with OCD come up with as a way of dealing with them. Since doubt is what drives most OCD, the answer, as OC sufferers see it, is to do, know, and control everything in a compulsively perfect way. When everything is perfect, there is no room for doubt. Compulsions start out as solutions, but inevitably become a large part of the problem themselves.
When Dan was dealing with his OCD, he was not able to drive. At this point I had little to no understanding of how he felt or what he was thinking and made the comment that his chances of getting hurt while driving around town were minute. Dan’s response was, “I’m not afraid of getting hurt; I’m worried about hurting someone else.”
The possibility of their actions causing harm to others is not an uncommon obsession for those with OCD. So let’s say that an OCD sufferer returns home after driving and thinks,“Good, I didn’t hit anyone.” But then the doubt kicks in. “Well, I don’t think I hit anyone, but maybe I did. What if I hit someone? I probably should go back and check. What if I hit someone and they are lyng in the road right now? I need to go check.”
The goal of this checking compulsion is to make absolutely sure that everyone and everything is okay. Once this is confirmed there may be some relief for the OCD sufferer, but it is fleeting. The need for reassurance returns, and the vicious cycle begins again. In this first person blog on OCD, we are shown how doubt infiltrates its way into every aspect of an OCD sufferer’s life; in this case, the writer describes her thoughts as she tries to answer a question on a form.
So how can those with OCD be certain that their worst fears won’t come true? Indeed, how can all of us make sure nothing will go wrong? How can we control our lives, and the lives of those we love, so that nothing bad will ever happen?
The answer, of course, is we can’t. Because as much as we’d all like to believe otherwise, so much of what happens in our lives is beyond our control. And so the question OCD sufferers need to ask is not “How can I be certain?” but rather ”How can I live with the uncertainty?” This is where the right therapist and therapy come in.
I have always liked this quote by the the French philosopher Michel de Montaigne: “My life has been full of terrible misfortunes – most of which never happened.” Replacing “what ifs” with “I’ll deal with whatever is,” is not an easy thing to do, but the payoff can be huge. Instead of concentrating on the uncertainties of the past and the future, OCD sufferers can begin to focus on what matters the most - the present.