Posts tagged ‘OCD advocacy’
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 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.
Last week I wrote about OCD and the importance of family involvement in treatment, and some of the comments I received proved to be real eye-openers for me. I realize that while I’ve previously acknowledged that writing about obsessive-compulsive disorder is a lot easier than having it, I am still somewhat naive when it comes to certain aspects of OCD. My general assumption has always been that family members, especially parents, are totally supportive of their loved one with OCD. This theory has been backed up over and over. I get comments and emails from family and friends of OCD sufferers who desperately want to help them. I connect with people at OCD conferences who want to learn whatever they can about the disorder so they can encourage and advocate for their loved one. I think of my own extended family who, when things were rough for Dan, offered to help out in any way they could.
While my own experiences are real, perhaps my view is skewed. Obviously I don’t hear from parents who are not supportive of their children. Why would I? And these same people are not attending conferences or reaching out to others or advocating for their loved ones. There are many reasons why this might be, such as believing their child should just “get over it,” or not acknowledging they are dealing with an actual illness. Maybe they’re embarrassed. To me, the reasons don’t matter much. What matters is there are people with OCD out there who are not only suffering, they are suffering alone.
This is heartbreaking. Even with all of the support in the world, OCD can be a devastating illness. But having to deal with OCD without that support? It’s hard for me to even imagine. And my guess is that many OCD sufferers who are unsupported are also ridiculed and totally misunderstood by those they love. Nobody deserves to be treated that way.
I want to make it clear that I am not talking about ignorance here. Ignorance is the lack of knowledge. Most of us who find ourselves catapulted into the world of OCD start off ignorant. I sure did. But we do what we’d do if our loved one had been diagnosed with any illness. We learn as much as we can about it and try to find appropriate help. Of course I know there is stigma to deal with. I know there are a lot of preconceived notions about OCD as well as a lot of misinformation. I know families and their histories can be complicated. I get this. But it shouldn’t matter. When your child is suffering you need to put all that baggage aside, learn the truth about OCD, and take appropriate action.
For those suffering with OCD who have not gotten the support they need from their families, it might be appropriate to take a step back and try to develop the support system they deserve. Good friends, clergy, social workers and teachers are some examples of people who could be helpful.
Unfortunately, I know I am likely preaching to the choir here. Those who have no interest in learning about OCD or helping their loved ones are probably not reading my blog. I just wish there was some way to reach them.
My friend Angie over at OCD in The Family recently asked her readers about their thoughts on parental involvement in their children’s treatment team. About a year ago, I wrote about some of my family’s disappointments in this area when my son Dan was at a residential treatment program. I think it’s an important topic that’s worth revisiting.
What I wrote to Angie, and what I firmly believe, is that parents are the experts on their children. Of course each situation is unique, and there are certainly exceptions, but in my opinion there are rarely people who know our children as well as we do. We take our children to psychiatrists, psychologists, and social workers, who see our children suffering, often in the worst condition of their lives. Good clinicians know how to treat OCD and other mental health disorders, but there is no way they can really know our children. That’s where I believe parents can be an invaluable resource, giving insight into who their children are when they are well; what makes them tick. This knowledge can go a long way in helping providers who are formulating a treatment plan.
Angie brought up an issue that is at the opposite end of the spectrum. Many parents automatically defer to the “experts,” assuming that they themselves have nothing to contribute. After all, these professionals deal with OCD all the time. What could they possibly tell them that they don’t already know?
What is needed, and what is most helpful, is collaboration. Therapists need to take parents seriously, and listen to what they have to say. Indeed, parents should be encouraged to be involved, even if they are inclined to “defer to the experts.” Another important ingredient in this mix is respect. I have heard from too many parents who have felt unwelcome in their own children’s treatment. This is unacceptable. What we all have to realize is that each of us comes into the treatment process with our own expertise. The therapist knows OCD and the parents know, and love, their child. Working together will likely culminate in the best possible outcome for the OCD sufferer. And really, isn’t that the goal?
I came across this great article recently, entitled A Phrase To Renounce for 2014: ‘The Mentally Ill.’ The first part of the piece discusses the phrase “the mentally ill” and the stigma that comes along with it.
Dr. Paul Summergrad, psychiatrist-in-chief at Tufts Medical Center and chair of psychiatry at Tufts University School of Medicine, has a problem with the definite article “the.” He says:
“Imagine if I said that [using the word 'the'] about any other group. It suggests that people who suffer with these conditions are somehow other than us, and can be put in a discrete and often stigmatized category. It creates a sense of otherness that is not the reality, statistically, of these illnesses.”
The author of the article, Carey Goldberg, gets the point, and realizes what an enormous effect one three letter word can have. She writes:
“I try a thought experiment, the headline “Equal coverage for the women.” Weird. “New era for the gays.” Offensive. “Crime and the blacks.”
It really is amazing the difference a word can make, isn’t it?
But what really piqued my interest is the second half of the article, where Dr. Summergrad discusses what a mental disorder really is. Basically, we are talking about issues with any type of mental functioning: thought, speech, emotion, behavior. As Dr. Summergrad says, this includes, “everything from Autism Spectrum Disorders to Attention Deficit Hyperactivity Disorder, through Obsessive-Compulsive Disorder, anxiety disorders, post-partum depression, recurrent depressive illness, dementing illnesses which have profound effects not only on memory but on behavior. Parkinson’s disease has high rates of very severe anxiety and depression.”
Personally, I have always felt there should be little to no distinction between mental and physical illness. Isn’t the brain as much a “physical” organ as our other organs? If we are ill we are ill, and our sicknesses rarely affect just one area of our bodies.
Dr. Gene Beresin, executive director of Massachusetts General Hospital’s Clay Center for Young Healthy Minds, also contributed to the article, emphasizing the blur between “mental illness” and “medical illness,” as well as the stigma still associated with disorders of the mind. He says:
For example, high blood pressure is a combination of genetics (biology), stress, obesity, cigarette smoking and numerous other factors. So why don’t we get upset when we hear ‘he has hypertension?’ The same argument should be made for so-called ‘mental illnesses.’ Post-traumatic stress disorder, for example, may be a result of a genetic vulnerability to anxiety, being trapped in a war zone, or being a survivor of a hurricane.
Virtually all illnesses have biological, environmental and psychological components. We could say the same for migraines, ulcers, asthma or diabetes. But it does not make one feel uneasy if we say, “He has asthma.’ On the other hand, ‘He has depression or obsessive-compulsive disorder feels so very different. Is that because it is labeled ‘mental?’ Certainly. ‘Mental’ is an arbitrary negative label that segregates something psychic, personal or ‘in the head’ from the body and the environment. It also is very scary.
And why is it so scary?
“This is because of the myth that it is not treatable,” Dr. Beresin says. “And that is certainly false. We have as good results as treating hypertension overall (considering medications, diet, exercise and stress reduction measures.) And the biggest horror is ‘losing one’s mind.’ This, I think, is a fate worse than anything short of death. Once we separate mind, body and environment and believe the myth of losing one’s mind, the myth of ‘mental illness has its perpetual fuel.’
I think this is a powerful article that brings up a lot of great points. The bottom line is the stigma surrounding brain disorders is alive and well, partly because of all the misconceptions that remain. Sigh. We still have so much work to do!
The first time I heard the term “executive functions” was when I went with Dan to meet his new psychiatrist. The doctor explained that people with obsessive-compulsive disorder typically experience deficits in their executive functioning.
What are executive functions? A search on the Internet yields plenty of information, though much of it is quite technical. One of the easier to understand explanations, which describes executive functions as the air traffic controller of the human brain, can be found here. Some skills associated with executive functions include planning, organizing, managing time, and remembering details. Those with executive dysfunction might find it difficult to focus, concentrate, make decisions, follow through on creative ideas, and shift attention to new information.
Dan struggled with all of the above. I’ve previously written about his trouble focusing and concentrating, which led to his misdiagnosis of ADHD. Decision making was also a big issue for him, as was time management. I always thought of these issues as by-products of his OCD, and that once his OCD was under control, all these other concerns would just melt away.
There’s no question that once Dan’s OCD was quelled, there were noticeable improvements in all areas of his executive functioning. So many of these issues had been interwoven with his OCD. Still, given Dan’s major recovery from severe OCD, the gains he made in areas of executive functioning didn’t quite correlate. They lagged behind. I concluded that this is just who he is and how his brain works.
I have since come across various studies such as these that confirm my belief. In one study, the executive functions of those with symptomatic OCD were compared to those who were in remission. In a second study, the executive functions of those who were symptomatic in the first study were reassessed after they reached remitted status. Results from both studies indicate that the “identified executive function deficits in individuals were stable over time and remained unchanged despite symptom remittance.” So even if someone’s OCD improves, their executive function deficits (if any) remain.
To me, these results serve as a good reminder that we are never dealing with “just OCD.” Really, when evaluating any illness, mental or physical, it is so important to consider the whole person: who they are, what makes them tick. I realize now the improvements I saw in Dan’s “executive functions” were most likely deficits directly caused by his OCD. Thankfully, he has learned to compensate for any shortcomings he might have pertaining to his executive functions, just as most of us do. We all have strengths and weaknesses; our brains are not all “wired” the same. And thank goodness for that!
I’ll be taking a break from blogging for a couple of weeks to spend some quality time with family and friends. I’d like to wish all of my readers a happy and healthy holiday season and wish you all the best in 2014.
During my break, I will repost some of my older, more popular entries. Below is a post I wrote back in September, 2011:
Support groups are often helpful for people. Whether you are dealing with a disease or disorder, or have experienced tragedy or trauma, there is nothing quite like connecting with others who are, or have been, in a similar situation. Why is this? I think one of the main reasons is because those in your support group simply know how it feels. While family, friends, and health professionals can support you and even possibly understand what you are going through, they will never truly know what it feels like.
When Dan was dealing with severe OCD, I wanted to know what it felt like. I knew he had constant agonizing intrusive thoughts, but how did he actually feel? If I could feel what he was feeling, then maybe I could somehow take away some of his pain. That doesn’t make much sense to me now, but for some reason it did back then. It wasn’t something we talked about a lot, as Dan had more pressing things to deal with than trying to describe his OCD to his mother.
Over the past few years, I have come across some OCD sufferer’s descriptions of what their anxiety from OCD feels like. The ones I remember are, not surprisingly, the ones I can personally relate to:
* You have that feeling you get when someone scratches their fingers down a blackboard.
* You have that feeling you get after swerving to avoid a potentially fatal car accident.
* You have that feeling you get when you take your eyes off of your child in a store for one minute, and then he/she is gone.
With the above examples, your physical and mental distress dissipates once the blackboard scratching stops, you avoid the accident, or you’ve located your child. But try to imagine having those feelings of intense anxiety repeatedly, perhaps hundreds of times a day. That is what some sufferers say life with severe OCD feels like.
I can imagine what it is like to have OCD all I want, but like I said before I will never really know how it feels. And instead of wishing I knew how Dan felt, I now wish that he, and all OCD sufferers, never had to feel that way to begin with.
It seems to me that OCD has become the mental illness du jour. Every day new celebrities announces they have the disorder and it seems to be popping up on prime time television shows as well. After all, it does make for good TV with lots of “interesting” rituals to focus on. Obsessive-compulsive disorder is being talked about more than ever.
While I believe the attention given to OCD is mostly a good thing, I feel that the disorder is still very much misunderstood. The general public isn’t getting it, and I’ve been wondering why. Is it just the misrepresentation of the disorder, or is it more?
I thought back to when my son Dan first told me he had OCD. I knew as much about it at the time as most people who had no direct experience with it. As I’ve shamefully admitted before, my initial response was, “Really? But you never even wash your hands!”
Aha. What I was focusing on, and what I think those who know little about OCD pay attention to, are the “compulsions” part of the disorder. In many cases, this is the concrete part of OCD; the stuff you can actually see. (I say “in many cases,” because sometimes, as in Dan’s OCD, compulsions are not visible. This is sometimes referred to as Pure O.) Washing hands, picking up twigs, tapping the wall, checking the stove, flicking the light switch on and off. This is where OCD gets its “cute and quirky” reputation, from these observable compulsions. So an outsider looking in might think,”Sure, it stinks that he has to check his stove twenty times before he leaves the house, but it’s not really a big deal.”
Of course, those of us who know more about OCD realize these noticeable compulsions are only part of the story. It is the obsessions, the crippling fears that drive those with OCD to perform compulsions, that are the source of their suffering. The torment that those with OCD feel varies but it can be so bad that it has the potential to totally disable them. And while we can educate people about obsessions and even give them lists of common ones, you still can’t see them. If you have a loved one with OCD or are a professional who works with OCD sufferers, then you have likely witnessed the devastating effects of the disorder. The general public has not, as those with OCD are adept at hiding their pain.
As we continue to advocate for OCD awareness, I think it’s our responsibility to differentiate between what OCD really is as opposed to the preconceived notions of the general public. Only then can we hope to enlighten others who might then think twice about saying “I’m so OCD.“