There is an important, if unspoken, issue among those who suffer from OCD. It affects both those who have recovered as well as those who are still in the throes of the disorder. It involves the irretrievable loss of that which is most precious to us all, something we all possess in limited quantities. I am referring to the loss of time.
One study done a number of years ago indicated that the average amount of elapsed time from the onset of OC symptoms until the time an individual went for treatment was approximately seven years. What studies don't detail for us is that these were years spent suffering, years of little or no productivity, years spent hiding symptoms from family and friends.
The question here is how may a person come to terms with the loss of a part of their lives, be it a few years or even decades? Obviously, for those who cannot come to terms with such a loss the outcome is depression and feelings of anger and resentment, not unlike reactions seen in grief for someone we have lost. It is bad enough to lose a part of one's life to a mistake or a decision made that you can at least feel responsible for or explain, but it is far worse to have been in the grip of microscopic flaws in your own brain chemistry, most likely inherited in the same manner as one's height or hair color. There is at least some comfort in knowing that your loss was due to something that you could have had a say in. A sufferer asking, "What did I do to deserve this?" will be hard put to come up with an answer that is consoling. We spend a lot of time in these articles discussing symptoms and how to get help for them, but not enough perhaps in understanding how this disorder impacts on people's lives and how sufferers can make sense of and go on living with these things.
To get some help in understanding these questions, I solicited information and reactions from attendees at an OCD support and education meeting I conduct monthly. A poll taken among the sixteen sufferers yielded the following information: by their own reckoning, they had lost an average of 13.7 years of their lives to OCD, ranging from 9 months to 45 years. The total lost time among these sixteen was 219 years, the equivalent of about three lifetimes! Not all were currently in treatment.
Much of what they had to say is probably typical of most OCD sufferers. At one end of the scale was extreme rage and anger; one person said that they still "hold a grudge." Another expressed anger and rage over having lost years to an incorrect diagnosis. The term "a living hell" was the way another characterized the lost years. Others expressed anger at themselves for having participated in the illness, even though they knew what it was doing to their lives. A comment relevant to this was made by one person who stated, "You regret it while you're going through it, but you don't care how much time you waste."
A bit further down the scale from anger was a feeling of extreme sadness and regret. This reaction seemed almost universal in our group: the feeling of having felt helpless then, as time went by, and knowing now that they are powerless to reclaim it. Some said that this sadness could escalate to depression if they concentrated on the subject enough.
Finally, at the other end of the scale was a feeling of current detachment and disconnectedness as a result of this past incapacitation. One individual stated that due to this lost time he now felt "like an alien." Similarly, another stated that "I feel total detachment now. My symptoms are less now, but I feel outside the everyday world." Rather than feeling strong emotion, some seem to have lost emotional contact with others, having drifted away during the period of their illness.
Clearly, we elicited a lot of unhappy reactions, having raised a rather sad topic. There was, however, one ray of hope. There was one woman who said she was now in recovery. Rather than concentrating on what was lost, she said "I feel fortunate at having found the right treatment." She further said that having escaped the illness, she was now able to live with "a sense of joy." While not wanting to seem like a Pollyanna, she added that "You never forget the time you wasted."
I believe there is something to be learned from this person. Looking for joy and purpose in the present, and trying to live each day thankfully and productively, while coming to terms with feelings about the past, is probably the wisest course of action. Looking back to a past that can never be retrieved is useless and paradoxical because in doing so, one runs the risk of losing even more time to feeling disturbed. Yesterday is beyond our control, just as the future is.
I believe that AA has it right with their motto"One day at a time." It can clearly be seen that all those who only look back on their lost years have merely achieved remorse, regret, bitterness and anger, rather than anything positive. Realistically, we know that being in recovery is no guarantee of a "perfect" life; there are no guarantees in this world. Recovering from OCD means overcoming perfectionism and the need for certainty. Medication is liberating, but it isn't perfect; nor is it free from troubling side effects. Everyday life, free of OC symptoms, will still contain its share of stress, responsibility and sadness. Some look at these realities and decide it isn't worth it, that it is more comfortable to cling to the discomforts they have grown familiar with, rather than risk trading them for the unknown. Some may even shortsightedly believe they have more to gain by remaining ill and settle for half-lives. Being in recovery means being free to participate, as everyone else, in the same imperfect world filled with fallible humans. However, it also means regaining the ability to be spontaneous, to strive, to be able to experience successes as well as failures, and to be able to take the credit or responsibility for either to be an actor, rather than a reactor. There may be dangers out there, but many are able to look past these and also see the opportunities. Suffice it to say that, despite whatever drawbacks some sufferers may perceive in recovery, no one I have ever known who has made it and put an end to the "lost years" has ever wanted to return to them.
Coming to terms with the "lost years" is a healing process. For those who cannot achieve an adjustment to the loss and find healing on their own, counseling will be of help - probably a type not unlike grief counseling. I say this because where there is great loss, mourning is important work necessary to coming to terms with it. In a book entitled "Grief Counseling and Grief Therapy," by J. William Worden, Ph.D., four goals of grief counseling are identified. They are, to paraphrase: 1) to accept the reality of the loss; 2) to identify, deal with, and express feelings (such as guilt, anger, anxiety, sadness, etc.); 3) to help the person to overcome various impediments to establishing a life after the loss; 4) to encourage the individual to make a healthy emotional withdrawal from the deceased and to feel comfortable reinvesting that emotion in another relationship (in our case, substitute "illness years" for "deceased", and "future life" for "relationship"). I believe that any counseling to help someone adjust to their lost years should work at these four tasks of mourning.
If your "lost years" are keeping you from moving ahead either with your therapy, or with your life post-recovery, consider getting help with this issue. It is real, it is legitimate, and it is worth resolving.
If you would like to read more about what Dr. Penzel has to say about OCD, take a look at his self-help book, "Obsessive-Compulsive Disorders: A Complete Guide to Getting Well and Staying Well," (Oxford University Press, 2000). You can learn more about it at www.ocdbook.com