(or, Now That I Know I Have OCD, How Do I Get My Environment To Help?)
Many people in our various support groups often ask, "What can we do about making our support system work better?"
As a starting point, mentally raise your hand if you yourself have OCD. OK, now raise your hand if you are acting as a part of a support system for someone with OCD. All of you in the first group should have also raised your hand for the second question. Not only because many of you who have OCD yourselves also know others with OCD, but because YOU are the first line of support in your own support system. It may seem obvious once I say it, but we often think about our support system as being ONLY those people around us. But who knows your symptoms, your anxiety, your inner world better than you? Probably no one. That means that YOU are going to be the most important person in the process of creating a supportive environment for yourself, as well as one of the people able to give yourself support. Does this mean that all of the supportive effort in this process has to come from you, in addition to all of the other efforts of anxiety, obsessions, compulsions, medications, appointments, etc? No, clearly not. But one concept is worth keeping in mind as we go through this discussion: having OCD is NOT your fault, but it IS your responsibility. That means many things, but at least it means that it's your responsibility to accept your actions, mend your relationships, and to lead the charge in your recovery. We'll get to your role in self-support later, but first let's talk about the next take-home message:

Creating.
Support systems are created, not found. They don't happen by themselves, and rarely are they just an act of fate. This is a pro-active process we are going to discuss, a process of growth, of change and of patience. Oh, I said the "P-word," didn't I? Patience. It's very hard to be patient when you're anxious. It's hard to be patient with someone who has OCD if, for example, their rituals are making us late, or keeping us awake, or more directly involving us. We might want to say, "Just do it!" or "Just stop it!" It's also hard to be patient with others around us while they are learning about our OCD as an anxiety disorder, as something completely compelling or completely distressing. We might want to say, "Just understand me!" or "Just leave me alone!" In either case, there is no "just" about it. At first, there is no way that either group can comprehend the other, since we haven't walked in the other's shoes. Teaching them about you takes effort, time and patience.

Creating a support system is like nurturing a plant: for a plant, we have to start with an idea of what we want and whether that's possible, we have to feed it, water it, pull out the weeds and prune it so it gets stronger in the right ways. For a support system, you have to start with an idea of what you want: what do you want your support system to do for you in concrete terms, what types of support are you after? You have to know if it's possible with the starting materials you have. Just as you can't get oranges from an apple tree, there may be people or situations that cannot give you the things you want, and you may have to look elsewhere. More about this later. Watering and feeding a support system might mean educating it and supporting the people involved as they go through the difficult task of learning about something nearly impossible for them to understand. Pulling out the weeds may be like pulling out the misconceptions and the faulty ideas. And pruning your support system may mean encouraging it in certain areas, giving it feedback about what works for you and why, as it gets stronger in its supportive properties. And, just like with a plant, you need to go over the same process week after week, with continued care and consideration. As the first line of support for your own recovery, how do you start to create your support system? The first step is to consider your role in self-support. Can you acknowledge what is your OCD and what isn't? Can you acknowledge when something is difficult, embarrassing, shameful or horrific for you, at least to yourself? Education about your OCD starts with educating yourself. I can't count the number of times I've heard people say, "Oh, is THAT my OCD too?" Sometimes certain symptoms are OCD-related and sometimes not. For instance, because someone talks all the time, does that mean that person has a compulsive need to tell, or do they use talking as a way to avoid uncomfortable topics and situations? You may know what things definitely ARE your OCD, but you may not always know what is not. A good place to start, if you're not sure, is with the Yale-Brown Obsessive-Compulsive Scale Symptom Checklist. It lists most, but not all, of the features that might be associated with OCD. Educate yourself about what your OCD is.One thing it is NOT is you. Let me repeat: you are not your OCD. I cringe when I hear people say "I'm OCD," or when other people say "He's OCD." You're people who happen to have OCD. We don't say, "I'm diabetes" or "I'm cancer" or "I'm ulcer." Why should you identify your very beings with a disorder? You may HAVE OCD, but you are not your OCD - there's much more to you than that. You need to understand and believe that before you can teach other people that. Much of creating a supportive environment will involve modeling for other people the way you want to be treated by the way you treat yourselves. The way you view yourselves will be an obvious example for the way you want others to think about you. Creating a supportive environment includes knowing that you are an otherwise normal person who happens to have OCD, and therefore DESERVE to have respect, supportive care and compassion shown to you.
Once you are educated about yourself and your OCD, it's important to become educated about other varieties of symptoms, levels of functionality and types of related disorders. How is this important in creating your support system? It will be helpful to the others involved in your support to know what things are NOT your OCD. This includes not only what things about yourself are stylistic, personality traits or personal preferences, but also what things they may hear about OCD that are not represented in your symptoms. You will want them to know how to help with your particular issues, and not spend time and effort on things they may think will be important but will really just distract them.
Now that you've prepared yourself to be an integral and leading part of your support system, it's time to take stock of the raw materials you have to work with. Some of you are lucky enough to have people in your environments who already know how to be loving, or who know how to accept things they can't understand, or can at least accept YOU even if they can't accept that anything else is problematic. Likewise some of you may find, when you do your inventory of potential support system members, that you have to look a little harder to find those things. Here is one place that often elicits the question of whom to tell, when and how much. One of my clients is fond of saying that he will tell only those people that can directly affect, or be affected by, his recovery, and then he will tell them only the things they absolutely need to know. Depending on how you think about it, this may include everyone he comes into contact with, and everything about OCD in general. This is obviously a very important decision, and there are very few hard and fast rules about who to tell. Sometimes you're disappointed by the negative reaction of someone you presumed would be supportive of you, and other times you're pleasantly surprised by finding support from people you had previously discounted. One rule here is not to count anyone out, but to proceed cautiously as you count people in. That might mean choosing to get to know people first, assessing the degree to which they are open minded and especially caring, before telling them anything about your OCD. Others find that it's OK with them to tell the world.
One guidepost may be your own degree of self-confidence, something often quite compromised by OCD. If you're very confident and can do well without unconditional support from everyone, then you may be more open about it; if you're more sensitive to criticism or lack of overtcaring and compassion, then you might be a little more cautious.
Once you've identified potential supportive people in your surroundings, take a second look. Many of you stop too soon in this assessment, looking only to immediate family and close friends. It may be that some not-so-immediate family (like aunts and uncles, grandparents, etc.) are much more understanding than you might suspect, and they may not have built up many predispositions that closer family members have due to the closer pains of daily involvement with your OCD or your anxiety. If you're a student, other students often make helpful supportive persons, since many students can empathize with unusual or difficult situations as they go through similar tribulations themselves. Teachers and clergy can also be very supportive as long as we are brave enough to reveal our irrationalities to them. But most of all, don't forget to include the OCD community as part of your very own support system. Not just your therapist, psychiatrist and family doctor, but the OC Foundations and Self-Help groups exist just for you and for your support.
Now, many of you will not be starting from scratch, meaning that you've been part of a group, family, school, church, society or whatever. Commonly, your symptoms may have long affected the other people in these groups, and at the point in your recovery where you start to look at others as potential support, you may notice feelings of guilt for the way your OCD has affected them. You may feel the need to say you're sorry, to let them know you're aware of the pain they've suffered. This may be a good way to make peace with others who would make good support people, and to align them with you on the same side in your battle against OCD, instead of having one battle with your OCD and another battle with them. But coming to terms with your past relationships and behavior does not mean that you are to blame for your disorder. It was always there, just waiting. It also does not mean that you could have done anything different from the way you did (or, for that matter, that look backward and say, "If only..." and then look for someone to blame. The truth is that, given the knowledge you had then and the conditions of your life THEN, you did the best you could do. In fact, given the tools we have, we all ALWAYS do the best we can. Why would we do anything else? Resenting that fact may be the only outlet for your anger at the past, and that may mean that working through the resentment will take an asking of forgiveness. That is, you may need to ask others to forgive you for their pain, you may need to forgive others for their ignorance, and you may need to forgive yourselves for both. Then you can all begin looking forward instead of backward, changing the future that you can change, and releasing the past, those things that you can't change.
Once you've chosen the first people to be involved with you in this relationship, how and what to tell them becomes an issue. This is where a professionally-produced book, booklet (like "Learning to Live With OCD") or family psychoeducational group can get you off the hook a bit by doing some of the most difficult explaining for you. Make use of these resources if they fit your style; if you'd rather say it in your own words, then do that. But there are several things that support people will need to be educated about in general terms.
For instance, they will need to know that OCD is at least partly genetic and largely biochemical; in that way, it is much like diabetes. However, the brain is a much more changeable organ than the pancreas. So unlike diabetes, learning itself can change brain biochemistry and thereby reduce symptoms. It affects a rather large part of the population, perhaps as many as 3-4 in every 100 people. It is a disorder of irrational but profound anxiety, the likes of which most people never experience in their lifetimes. I sometimes use the analogy of standing on the threshold of a skydiving airplane without a parachute, holding onto the door frame with white knuckles while someone behind you is pushing and saying, "Just let go!" You know that if you just let go, you'll die. Even though rationally you may KNOW that if you don't wash your hands you won't really die, the anxiety can feel that bad. Support people need to know how compelling that much anxiety can be. They also need to know how you can reduce your anxiety while involving them as little as possible when you're not yet ready to work on a particular irrational fear. Knowing some anxiety management techniques can help here. They will need to know to expect resistance from family systems under changing conditions, even changes for the better. This will include how you might unintentionally sabotage your recovery or that of others if the change is itself too anxiety producing. They will need to know what things they can do or say that will support YOU and not your OCD. This will include things like learning how to respond to requests to help with a ritual (eg., "It seems like you're having a lot of anxiety about this. How can you make this work for you while your anxiety goes away on its own?") or to questions of reassurance (eg., "Do you really not know, or is that your OCD asking that question?"). If you're taking medications, it might be helpful for them to know how to help you stay on your medication regimen, and what, if anything, they might need to anticipate in terms of your responses to medication side-effects. If you're doing behavior therapy, even if they are not involved in the daily assignments, it may help you to explain to them how Exposure and Response Prevention works, especially for your symptoms. This is true not only because they can be more aware of what you are going through as you face your anxieties, but YOU also will learn E&RP better if you have to teach it to someone else.
One of the biggest challenges to support people is how to understand something as irrational as OCD, especially if you are rational yourselves and if you perceive your OCD sufferers as otherwise rational people. One of the biggest challenges to those of you with OCD is how to explain to someone such an irrational set of fears and responses, especially if they are very rationally-minded people. Dale Carnegie wrote a very famous book for the business world called "How To Win Friends and Influence People." One thesis of this book was that if we want people to act in a certain way, we really need to figure out how to make it important to them to act that way, not just to tell them how much it would mean to us. You may not ever be able to completely explain OCD to people who have never experienced it. However, you can help them learn how to act toward you in helpful ways, especially if you can understand how to think like them, to put things in ways they can understand, and to make it worth their while to do so. Helping them to understand a little of what your OCD is about might mean using some exaggerations of smaller fears or anxieties they might have, or using examples of things that would make most people anxious. For instance, imagine what it would be like to be driving your car at 65 mph, just about to hit an oncoming car, and having someone tell you "Just keep going." Then imagine having that same level of anxiety every day for most of the day. Or, imagine what it would be like to go to work naked, knowing all the time that that's what you were doing - no surprises- and that it was going to be Office Picture Day. Then imagine that level of shame and embarrassment with you all the time. Examples like these can help others understand our irrational anxiety, or at least appreciate how it might make THEM feel. Then ask them, "Wouldn't you want to get out of that situation, at almost any cost?" Of course they would. And your rituals, as ridiculous as they may appear, are the only ways you've found to "get out" of the situation you're in. The problem is that every time you use these to get out of the bad situation, you reinforce the ideas that not only do you HAVE to get out of that situation, but also that you must use the rituals to do so. That supports your OCD, and doesn't support you.
Teaching others how to support you and not your OCD is a very important part of making a support system truly supportive of your recovery. You need to teach them that in order to regain control of your lives, in addition to regaining control of your relationships with them, you have to face your fears and not pull away, not artificially decrease your anxiety, to Expose yourselves to your dragons and Prevent the Response you use to lessen the anxiety. They can support your OCD by "helping" to lower your anxiety, or they can support YOU by acknowledging your anxiety ("This seems really hard for you." "I'm proud of you for facing it." "The anxiety really will go away by itself." "You know that a rational reassurance will only help the OCD get stronger, and I want to be on YOUR side."). This is good for them because it will improve your relationship in the long run by working together on a common goal and by reducing the baseline level of anxiety within your relationship. They can support you by learning the rules of the battle, and by being your lieutenants, but only you can be the General against your own OCD. Only you know how much anxiety you face, what exactly causes it, and what you are ready to face.
Sometimes being supportive means helping you be strong in your exposures, and sometimes it will mean allowing you to acknowledge that a particular exposure is too much for right now. It NEVER means taking some of the anxiety for you, taking some of the responsibility for you or taking some of the risk for you, if the exposure is one we're really ready for. Don't compromise with OCD. Treat it like you would any other terrorist: NO DEALS. Like Yoda said in Star Wars, "There is do or do not; there is no 'try'." Pick your battles wisely, and let your support people know which ones you are ready for and which ones you aren't.
Since OCD truly is the "doubting disease," you may have trouble with this, but learning to make decisions can start here just as well as anywhere. Don't ask your support people if you are ready for something, because they don't know. Tell them you're ready. They may even want to ask something like "Do you feel ready to do this exposure?" especially if they hear you say "I think I can" or "I'll try."
A tricky situation often arises when OCD compromises a member of your support system. Your rituals might involve them doing extra cleaning, making them late, making them anxious. How can your support system members be supportive of you and of themselves, when you may appear to have different agendas? We have to recognize that in most of these cases, the other agenda it that of OCD, not you. YOU don't want to make them late, OCD does. You need to teach them that it's important to set limits for OCD, even if those limits may temporarily increase your anxiety. If you give OCD an inch, it will take a mile. Have them set a time limit for when they are leaving, and then expect them to leave. Otherwise they will be siding with the terrorists. This may sound like "tough love" and it is, but the emphasis is on love. Only someone who loves you more than they fear your OCD will allow you to feel anxious temporarily in exchange for a long-term benefit. Recognize how hard it must be for them to see you in such agony, and that only their respect for you keeps them from jumping in too fast to "save" you. If this is already ongoing, then they need to know that the goal is to be involved in your rituals as little as is possible. Removing them from the grasp of OCD will be nearly as delicate as removing yourself from it, so expect them to make some mistakes along the way. Discuss these later, and strategize as to how you all can react differently next time. Don't plan ways to avoid the situation, since avoidance is usually not the most useful solution. Reward or praise them for the small things they do that are really helpful to you. This keeps them doing it, and it will show them the way you would like to be acknowledged when you have a noteworthy accomplishment. Remember, simple things are not always easy, for any of us.
Finally, encourage your support system members to do some of the same "continuing maintenance" things you are doing. Have them go with you to OCD conferences or to hear local speakers. Join the OC Foundations, both national and regional. Bring copies of newsletters that directly apply to your OCD to your doctors and therapists in addition to your families. And, most of all, encourage your support system members to join an OCD self-help group, or to start one if one is not close to you. This is one more thing you can do together, one more place they can learn to be more useful helpers (and where you can learn more ways to communicate your needs to them), and where they can get some nurturing and support for themselves. They have a tough job, too.