I read an article today that really bothered me. The author wrote about the suicide of her teenage daughter due to OCD but it seemed to me to be very one sided. It read to be more about how much the treatment for her child's OCD cost the author, how long the drives for her child's treatment were, how her child's OCD destroyed her marriage, how it took and took and took from the author. I read this and as a sufferer from severe OCD for over 32 years, all I could think of was the teenager. What about all that she had gone through? What about all that she lost, because I can tell you from personal experience it was a hell of a lot more than the author did. After all, she lost her life to it. It bothered me that it seemed to be more of an itemized list of things that affected the author and inconvenienced the author but without it really touching on the absolute agony OCD is. This article bothered me for many reasons, but the biggest reason for me was the inability to get on the same level as the sufferer. Don't get me wrong, I believe the author loved her child very much. Maybe she was just unable to understand the immense pain and guilt that OCD causes. Maybe she was pressured for time and just wrote how OCD affected her personally and not how it personally affected her child. I don't really know. What I do know is that the article made me angry and sad all at the same time and it just clarified for me how most people just really do not understand Obsessive Compulsive Disorder very well.
To rectify what I read and found to be almost offensive, I wrote down 10 things that helped me when I was younger and still continues to help me today. This is not advice as much as it is MY OWN PERSONAL OPINION.
1. Don't say that your loved one's OCD tore your family apart and destroyed your life.
Not everything is about you so do not try and make this about you. A person's mental illness is just about them. You suffer because they suffer but make no mistake, your suffering is no where near the suffering we are going through. If you feel OCD is tearing your family apart, just imagine how much devastation it is causing us. Now imagine being told you are the one tearing apart the family on top of all of that devastation. You can't say something like that and not have the sufferer think it is their fault and that they are somehow responsible for having it. It only makes us feel like more of a burden to you. OCD is different from other mental illnesses, in that, we can tell that our disorder is negatively affecting our families and lives. We do not need you to point that out and make us feel less than because of it. Our OCD isn't something being done to you, it is something being done to us. We feel guilty that it affects you as well but it is not our fault we have OCD and saying something like only makes us unfairly blame ourselves just that much more.
2. OCD does not just pop up overnight.
We may have less obvious symptoms. Mine started at the age of four. My parents saw it and knew something was off, they just didn't know what. No one wakes up one day and just randomly starts touching door knobs twenty five times. Their symptoms may be more obsessional and less compulsive. Less noteworthy than others. It is not like catching the flu. The signs are there, hidden as they may be.
3. Please DO NOT say that you just wish they would be normal again.
That is a loaded statement. Once a person has OCD, normal is no longer a possibility. There is no cure. There is manageability. There is learning to live with it. There is having a good life and being OCD although, there will always be both good and bad days. The "normal" part of that person is a fun house mirror. A parlor trick. An illusion with smoke and mirrors. There is no normal, only normal for him/her. Drop the "just be normal" crap. It causes guilt we don't need and only further makes the sufferer feel bad about themselves. We aren't normal and we can learn to live with that fact. It is you that is holding on to an illusion when you say those things. It is your problem of accepting our mental illness, not ours.
4. Being a "tough love" parent is not always a good idea.
OCD is an anxiety disorder. When we are suffering from anxiety, the very last thing we need is to have more anxiety thrust upon us because you are frustrated. We are frustrated too. Frustrated that we suffer. Frustrated at the pain and agony that accompanies our suffering. And frustrated that clearly you have a lack of understanding of what we are dealing with here. Listen to their doctors/therapist's advice on dealing with your loved one's anxiety disorder even if they point out that something you are doing is wrong. Even if it isn't what you want to hear. Again, this is not about you. Nothing says "I blame you" like yelling and pushing the OCD person to do something they feel they can't do with snide comments or condemnation in your tone. You push them gently, with many supportive discussions. You slowly egg them on with love and affection. They will have to do things they are very uncomfortable with and your job is to be there for them. Not lording over them with judgment on as to why they are failing at it and with contempt in your voice. You do not simply badger and belittle OCD away. It does not work that way and if anything it can make it worse.
5. Stand up for us.
Stigma is real and there be will people who do not believe we have what we have. They will say derogatory things to us or about us. They may try to trivialize or minimalize what we go through. They may make remarks about us being over dramatic, lazy, and or looking for attention. They may be friends, coworkers, or even family members. They do not understand but that does not give them the right to assume they know anything about our disorder or how it works. OCD is very complicated with, often times, several different symptoms. To support us, you need to stand up for us to these people. Educate them if you can. Tell them to fuck off if you can't. No one needs to be accused, discriminated, badgered, judged wrongly, or stigmatized further when they are already suffering from something that makes them feel bad about themselves. This kind of thing can make a bad situation even worse and make a toxic atmosphere for both the sufferer and the one's that love them.
6. Stop rationalizing.
OCD has no rational components. Someone who is afraid of germs may have issues with one place or object deemed dirty to them and not with another. Some one might fear being touched by a white cat and not an orange one. Someone may have to open and close the front door ten times but not the back door. We are aware it makes no sense. That does not make it any easier for us to deal with. Case in point, I am a germ-a-phobe and I hate grocery stores. I don't like to touch shelves there or sometimes even the products I want to buy. I, however, have no issue with the shopping cart even though, I know that the handle of the shopping cart has all kinds of germs on it. My OCD is not triggered by this one object but triggered by other things in the same store. There is no rhyme or reason for our fears. Don't rationalize as to why one thing bothers us and the other things don't. Just accept that the fears are what they are.
7. Educate yourself.
OCD is a mental illness and as such has many different symptoms. There are also varying degrees of severity. Some may be more text book i.e. excessive washing, fears of contamination or germs, touching, counting, checking. There are also less talked about symptoms i.e. fears of being homosexual (or if you are homosexual fears of being straight), harm fears, medical fears, reassurance. There are outward compulsions and inward mental compulsions and just when you think you have your symptoms figured out they can and do change around on you. Unwanted intrusive thoughts and images often plague the OCD sufferer. There is an over abundance of guilt and shame. There are phobias and triggers to panic attacks. Some people do outward repetitive actions to calm their anxiety and some do repetitive compulsions inwardly in their minds. No one is exactly the same and no one's fears are exactly the same. So, what freaks one OCD person out may or may not bother the next OCD sufferer. To help, you should be familiar with the behavioral therapies that tend to be helpful with OCD and also the medications prescribed for OCD. You can educate yourself easily with websites, books, blogs, and doctors. Basically, if someone you love has been diagnosed with OCD then you should be educating yourself to how OCD works. It is so easy to find out more about OCD in this day and age that there is absolutely no excuse for walking around being wholly ignorant about it.
8. Be Patient.
There is no one all to be all cure for OCD. It does not go away over night. It takes years of therapy and finding the right medications to help the sufferer cope....Not months, not weeks, not days but Years. Be patient as we figure out our triggers and work tirelessly to get over them. Be patient when we have set backs, because everyone does. Be patient while we learn how to stand on our own two legs to fight the monster of our nightmares (anxiety). Be patient when we look for reassurances, repeat ourselves or our actions, get upset with something because it doesn't feel right or takes too long. We know these things are frustrating, they are frustrating for us as well, be patient. Be patient with the drug side affects that can make us cranky, bloated, exhausted, or weak. Be patient when we have to do therapies that push the borders of our comfort zones and we freak out. Be patient as we repeat this cycle over and over and over and over and over again. We can't help it and we are working really hard to be more functional.
9. Silence is not golden, it is deadly.
OCD is often thought of something humorous or quirky. In reality, it is a devastating mental illness that brings with it self doubt, frustration, immense pain, shame, and guilt. It can lead to other mental illnesses or coincide with them. OCD needs to be treated, listened to, and talked about. It is just as deadly as depression or any other mental illness. The weird things we do may seem funny to others but they are agonizing to us. They are painful to us. We need to talk about them. The deadliest thing about OCD is silence because if we remain silent we do not get the help we need nor do we help erode the reality of the stigma and bias that surrounds it. Shame keeps us silent. Guilt keeps us silent. Fear keeps us silent and silence is a killer. Let us talk. Listen to what we say. Continue to discuss it with others. Continue to educate to the masses. Never, ever remain silent.
10. Remember we are people too.
Sometimes the anxiety seems so all consuming that people can forget that we are more than just our mental illness. We are people too. We like to do things. We like to be happy. We love, we laugh, we play. We are not just OCD, we are also human beings. We are still the person you love even though we struggle. That never changes. Remember that although we have a mental illness, we are not just our diagnosis. We may need help but we are strong and resilient individuals. We are productive members of society. We are doctors, lawyers, moms, and dads. We are children and teachers and bus drivers. We are bloggers and authors and painters. We are factory workers, retirees, and mailmen. We are everywhere. We can be anyone. We are humans with dreams and desires and families. We are loved ones who have loved ones. Remember that we are not just OCD people. We are people who just happen to have OCD. And everything that applies to being human also applies to us as well because although we suffer, we are people too.