Living with OCD
A Personal and Professional Account of Supporting a Loved One with OCD
Have you ever spent hours checking locks on the doors just to make sure they ‘felt’ locked correctly? What about struggling to leave your house, even after being reassured for the 100th time that nothing bad was going to happen? Have you ever washed your hands so much that your skin is cracked, red, and raw, & still they don’t feel clean enough? Or maybe you can’t eat anything unless your mother cooks it, because anything else would be poisoned or contaminated?
The 5th Diagnostic Statistical Manual, defines Obsessive Compulsive disorder as a disorder in which people have recurring, unwanted thoughts, ideas or sensations (obsessions) that make them feel driven to do something repetitively (compulsions). It is a disorder in which repetitive thoughts and behaviors become so consuming that day to day activities are a constant struggle.
My brother never finished high school, is petrified of driving a car, (so he’ll never have a license), can’t travel out of state (or even out of the zip code he lives in), he can’t work an 8 hour job (his rituals take over 5 hours a day), and he can count the number of supportive friends on one hand (2 to be exact). At the age of 11, my brother was officially diagnosed with Obsessive Compulsive Disorder, which for my mother meant an answer, but for my brother meant identifying the prison he will forever be living in.
When a family member suffers from a severe mental illness, more often than not, the way in which the family functions is altered. I began to see my father getting more frustrated and angry, I began to see my mother focusing her energy on what my brother needed, and his rituals. I began to see my sister develop anxiety and ‘stomach aches,’ and I began harboring resentment. My family did not discuss the elephant in the room, and we never once sat down to discuss what my brother’s illness meant. Instead, we allowed the lack of communication to build a very dense wall between each other in traditional midwest fashion.
Mental health was a foreign concept growing up, which contributed to the lack of understanding in what OCD is, and how it affects an individual. At a time when there wasn’t Google, WebMD, or Psychology Today, the education of the disorder came from what my mother told me. My mother said, “It’s a neurotransmitter in the brain that clicks on with a thought, but won’t let you click it off. Most people can get rid of bad thoughts, but with OCD it’s much, much harder.”
Back in the 90’s and early 2000’s, our family didn’t know what family accommodation was, and how it actually hinders people struggling with OCD in reducing their symptoms. Family accommodation is when family members help participate in compulsive rituals, which ultimately impacts the overall functioning of other family members within the household. An example of this would be ignoring needs of other family members in order to carry out a ritual, or allowing the individual with OCD to monopolize an area of the house such as the bathroom for hours.
Had I known what I do now about Obsessive Compulsive disorder, I wouldn’t have held onto the resentment and anger for as long as I did. It wasn’t until my mid-20’s that I began to realize it wasn’t my brother that I was angry and resentful of, it was the disorder. It took the brother who used to make me laugh with his spot-on cartoon impressions. It took the brother who was always up for riding bikes to Kimball Hill Pond, and the brother who would always give me the twizzlers from his Halloween stash every year without fail.
So how do you cope with a family member who is struggling with OCD? Below are some tips from the International OCD Foundation that I wish I had access to when I first heard of this disorder:
1. Educate yourself: When you understand what the disorder is, you are able to recognize when someone is struggling. The more you criticize, the more their behaviors intensify.
2. Modify expectations: Change of any kind (even positive change) is a trigger for those with OCD. Progress is different for any individual with OCD, so don’t expect the first week of medication or first session of Cognitive Behavioral Therapy to be the cure. It’s an ongoing process.
3. People get better at their own pace: Comparing the individual with OCD to other people with ‘anxiety’ or similar symptoms does the opposite of help, and is not supportive. Encourage them to challenge themselves, but never compare!
4. Avoid comparing them to the previous day’s self: People with OCD can show immense improvement one day, and then regress the next. It is important to know that change is a ebb and flow process for people with OCD. Do not compare them to being better yesterday, or saying ‘what happened to you yesterday, you were doing so good!’
5. Recognize small improvements: It takes a lot of strength, energy, and focus to change behaviors, so when someone with OCD makes a change of cutting down time (shower/bathroom rituals), or being on time for appointments, acknowledge it!
6. Create a supportive environment: Avoid criticism! Your family member needs encouragement and acceptance. By criticizing your family member you are telling them they can’t seek support from you.
7. Be sensitive to mood, but set limits: Mood affects ability to divert behaviors/rituals, so if they are already in a stressed out mood, or having a ‘bad day,’ give them their space, but don’t ignore agreed upon family contracts regarding time, or how much reassurance is given to make it through the day.
8. Support Taking Medication as Prescribed: All medications have side effects that range in severity. Ask your family member if you could periodically attend their appointments with the prescribing physician. In this way you can ask questions learn about side effects and report any behavioral changes that you notice.
9. Keep Communication Clear and Simple: Avoid lengthy explanations. This is often easier said than done because most people with OCD constantly ask those around them for reassurance. “Are you sure I locked the door?” or “Did I really clean well enough?” You have probably found that the more you try to prove that the individual need not worry the more he disproves you. Even the most sophisticated explanations won’t work. There is always that lingering “What if?” Tolerating this uncertainty is an exposure for the individual with OCD and it may be tough. Recognize that the person with OCD is triggered by doubt, label the problem as one of trying to gain total certainty about something that cannot be provided, this is the essence of OCD and the goal is to accept uncertainty in life. Avoid lengthy rationales and debates.
10. Separate time is important: Family members often have the natural tendency to feel like they should protect the individual with OCD by being with him all the time. This can be destructive because family members need their private time, as do people with OCD. Give them the message that they can be left alone and can care for themselves. Also, OCD cannot run everybody’s life; you have other responsibilities besides “babysitting.” You need and deserve time to pursue your interests too! This not only keeps you from resenting the OCD it is also a good role model to the person with the OCD that there is more to life than anxiety.
11. Set limits on talking about OCD: It is often difficult for family members to stop engaging in conversations around the anxiety because it has become a habit and such a central part of their life. It is okay not to ask “How is your OCD today?” Some limits on talking about OCD and the various worries is an important part of establishing a more normative routine. It also makes a statement that OCD is not allowed to run the household.
12. Keep your family routine normal: Often families ask how to undo all of the effects of months or years of going along with OC symptoms. For example, to “keep the peace” a husband allowed his wife’s contamination fear to prohibit their children from having any friends into the household. An initial attempt to avoid conflict by giving in just grows; however, obsessions and compulsions must be contained. It is important that children have friends in their home, or that family members use any sink, sit on any chair, etc. Through negotiation and limit setting, family life and routines can be preserved. Remember it is in the individual’s best interest to tolerate the exposure to their fears and to be reminded of others’ needs. As they begin to regain function, their wish to be able to do more increases.
13. Be aware of family accommodation behaviors: First there must be an agreement between all parties that it is in everyone’s best interest for family members to not participate in rituals (Family Accommodation Behaviors). However, in this effort to help your loved one reduce compulsive behavior, you may be easily perceived as being mean or rejecting, even though you are trying to be helpful. It may seem obvious that family members and individuals with OCD are working toward the common goal of symptom reduction but the ways in which people do this varies. Attending a family educational support group for OCD, or seeing a family therapist with expertise in OCD, often facilitates family communication.
14. Consider using a family contract: The primary objective of a family contract is to get family members and individuals with OCD to work together to develop realistic plans for managing the OC symptoms in behavioral terms. Creating goals as a team reduces conflict, preserves the household, and provides a platform for families to begin to “take back” the household in situations where most routines and activities have been dictated by an individual’s OCD. By improving communication, and developing a greater understanding of each other’s perspective, it is easier for the individual to have family members help them to reduce OC symptoms instead of enable. It is essential that all goals are clearly defined, understood, and agreed upon by any family members involved with carrying out the tasks in the contract. Families who decide to enforce rules, without discussing it with the person with OCD first, find that their plans tend to backfire. Some families are able to develop a contract by themselves, while most need some professional guidance and instruction. Be sure to reach out for professional assistance if you think that you could benefit from it.
Having a family member with OCD can be difficult to deal with because it can be a selfish, irrational, and consuming mental illness. But, it doesn’t have to be a reason for distance between family members. Conflict will happen, and frustration will happen, but keeping communication as a priority will reinforce the love and support those with OCD need in order to be successful in overcoming this disorder.
Sources
International OCD Foundation
PO Box 961029, Boston, MA 02196
https://iocdf.org/expert-opinions/expert-opinion-family-guidelines/
(From Learning to Live with OCD) By Barbara Van Noppen, PhD and Michele Pato, MD. This article was initially published in the Spring 2009 edition of the OCD Newsletter.