Explaining OCD to family

My parents are not aware that I have OCD.  They are aware that I have some "germ issues", but don't even realize how deep those go.  Nor that it is part of a larger, and very serious, problem called OCD.  This letter is not something that I plan on giving to my parents anytime soon, if ever.  I've not yet decided if or when I will tell them, but this is what I imagine I would want them to know.

Dear Mom and Dad,
There is something that I have been keeping from you for a long time.  I feel really bad about this, because I know as my parents you would want to know if I was dealing with something serious in my life.  I think after I tell you this, a lot of things will start making sense for you.  The truth is I've been ashamed and embarassed, and so I've continued to keep it a secret from basically everyone around me.  I know that you've noticed how I am very distant lately.  I used to come around to your house very frequently and go to all of our family gatherings with extended family, and it's been a very different situation now for a few years.  I know it probably bothers you that you don't get to spend a lot of time with your grandaughter.  I know it bothers you that our family doesn't come to birthday and holiday celebrations.  That we don't eat at gatherings.  That we don't come over on Mothers or Fathers Day.  That we don't take you up on offers to go eat together or go see a movie or anything else you might suggest.  The truth is I've been dealing with a problem for about 9 years now.  When it first started, it didn't really interfere with my life too much.  But over the last few years it has become such a problem to where I have a hard time leaving the house anymore.  I've been sick.  I have an illness, not a physical one.  Something that is hard for a lot of people to understand, and the fear of being misunderstood is honestly a lot of the reason why I keep this a secret.  Unless you have this disorder, it is hard to really understand anything about it.  What I have is called OCD (Obsessive Compulsive Disorder).  Yes dad, you watch the show Monk, but it goes much deeper than that.  It is not a quirk, it is really a way of life and a disorder that has affected virtually every part of me and affects my family and your family, in turn.  t is not just a germ fetish as you may think.  It goes so much deeper than that.  I have a very severe case of OCD, and it has continued to get worse throughout the years.  OCD can cause people to have issues with a lot of things:  checking things (to make sure that lightswitches, faucets, ovens, doors are turned off).  People can develop what is called "magical thinking" where they feel that something that they do can somehow affect the outcome of something else (for instance someone might think if they don't do X task acertain number of times, then they could cause harm to come to someone they love).  Some people have issues with symmetry or order.  Some people have contamination issues (which goes much deeper than being germaphobic).  OCD is an anxiety disorder.  I am not crazy.  That is important to remember!  :)
OCD is characterized by "obsessions" and "compulsions".  I definitely have a fear of germs and very much am at a point where I don't even want people touching me anymore.  It makes me sad, but this is where I am right now.  Here is an example of how OCD is triggered and hopefully this can explain a little bit to you.  If I come over to a family gathering there are so many things that bother me.  People everywhere, that could possibly brush up against my clothes.  People will want to hug me, and I can't stand the thought of peoples hands on me or their clothes touching me.  I don't want to sit on other peoples furniture, because I don't know how "clean" it is or who has been sitting there, or what they have been wearing in those chairs.  Food bothers me because people touch the food, they touch the serving utensils.  I've seen a lot of really gross things happen at family gatherings which become "stuck" in my head and I just can't mentally deal with it.  If I come to a family gathering I start to have the "obsessions"--many of what I just named above.  I can not get them out of my head. They are distressful thoughts.  When I come home I have to "fix" the situation, and this is where the "compulsions" come into play.  Compulsions are the OCD's way of reducing the anxiety that comes with the obsessions.  I feel extremely dirty after people have been touching me.  My way, at the current time, of dealing with this is to avoid a lot of situations, because it's simply too overwhelming to deal.  This will probably sound crazy to you, but here is what I would do in order to "decontaminate" myself if I came to your house.  First of all, my clothes are now dirty because I've been touched/hugged by people and sat on couches that I don't feel are clean.  My socks are contaminated because I've walked around on your floor.  I am now going to carry that "contamination" to my car and my shoes and now my carseat and shoes will be dirty.  When I get home I will have to first clean off my carseat because I don't want to sit in there again once I have new, clean clothes on.  I'm not sure what I will do with my clothes, it depends on what happened.  You might find that I stand around your house and don't want to sit down.  If I can manage that, then my jeans are still clean, but if I have to hug someone then now my shirt is dirty.  Depending on what happened will determine how I handle my clothing.  I try really hard to keep it and it will require a couple cycles through the washer separately in order to wear it again.  If it is completely contaminated, then I might feel like I can not wear it again.  Then I need to get in the shower and decontaminate my body.  If people have hugged me, then I will most likely  need to apply antibacterial soap over my entire body, in addition to my regular body wash that I use.  I would plan ahead and wear a pair of "contaminated" shoes to your house, so that my dirty socks from your carpet wouldn't contaminate my everyday clean shoes.  Because I hate these rituals and compulsions of decontaminating myself and feeling dirty, I avoid situations in where I can be triggered.  I don't come over, I don't go to family gatherings because it makes it easier to deal with.  I realize it also socially isolates me and that our relationship is not as close as it could be, because of that.  The OCD affects my life in more ways that you can imagine.  It is impacted my marriage, my parenting, my job.  It affects how I eat, how I do laundry, how I clean the house.  It affects my ability to be with our dog.  I am unable to do a lot of things socially that I want to do, and that in turn affects my family too.  What I want you to understand is that I don't want to be like this.  I did not ask to have OCD and is not a choice for me.  It is a brain based disorder, one where the chemicals in my brain are "messed up" and there are structural differences in my brain since I have OCD.  It is a true medical disorder and one that is very debilitating.  It is not something to be taken lightly.  I read about it in nursing school, I remember probably a few paragraphs was dedicated to it in our book, and I probably never gave it a second thought after reading it.  I could never have understood the devestating effects of OCD at that time, but I fully understand them now.  I'm really not proud of OCD at all.  I'm quite embarassed by it and angry at all that it has taken away from me and our family.  I have struggled with anger and depression because of this all.  I have been very unmotivated and discouraged at this point.  I don't want you to think any differently of me because of this disease.  I am still the same person, but now you know that I struggle with OCD.  I don't want to be defined by my OCD either, that is not who I am.  I want you to see the OCD as something separate from me, and that is really hard for a lot of people to do.  It's easy to take it personally, but you should learn not to.  I don't know how you do that, but it's important to remember.  I don't know how you feel about knowing this--if you are angry or sad, or disappointed that I didn't say anything sooner.  I just feel really guilty a lot of the time and I don't want you think anymore that I am avoiding you or just don't want to be with you.  Please know that I very much want to spend time with you, but the OCD gets in the way and makes it hard.  I realize a lot of this is because I've chosen not to share this with you.  Perhaps if I'd said something sooner, then we could have still gotten together for celebrations and you would have realized the OCD was just preventing us from not eating with you, not that we didn't want to spend time with you.  The OCD is really a daily struggle for me.  It's not something that just pops into my head a few quick times a day and then it's done.  It's really become a way of life for me and pretty consuming.  I have been reluctant to get help for this, because as you know I am an independent person and I don't like relying on someone else to help me.  It's also embarassing as I've mentioned before.  I have let this OCD run my life for awhile now, and I'm trying to start working on things to get my life back.  It is going to be like digging myself slowly out of a hole for awhile, basically.  There are some things that go on that cause me way too much distress right now in my life, and with OCD treatment you need to start low and work up high.  I make baby steps, because I feel that gives me the best chance of beating this.  You can't even begin to imagine some of the things that go through my mind and what I deal with, and so I just don't know if its possible or even necessary to explain that at this point.  I think that going on the Internet and doing some research on reputable sites is the best way that you might be able to find out more about this illness.  Because you don't live in my house with me, it is hard for you to see how this affects me.  People with OCD are generally very good at hiding their behaviors, because they want to appear normal on the outside to other people, including their own families.  Hiding it is stressful and a lot of work too.  I don't mind if you ask questions either.  I would rather you ask me why I do/don't do something rather than come up with your own opinion as to why I do/don't do something.  Please realize that this will be a constant struggle in my life.  There is no cure for OCD.  It can be managed, but it is very hard work.  I am doing that hard work, and that is another reason why I have been do distant.  It is exhausting to try to beat this thing, but I'm doing my best.  I'm also trying to function as a wife, mother, and a nurse in the midst of all of this, so my days are mentally/emotionally taxing on me a lot of the time.  I am trying really hard, and I need for you to understand that.  My OCD started off as mild over 9 years ago, then became moderate for several years and then very much consuming for about one year.  I am starting to imorove in some areas, have completely eliminated a lot of problems, but this is probably my biggest issue right now and it causes me to avoid and isolate.  It makes me sad, and I desperately wish it didn't have to be this way.  I am sorry if you feel I don't want to spend time with you. And I'm sorry that I'm distant.  I know it appears to you that I don't care, But I can assure you that I do.  I care about you both very much, and I don't want you to think otherwise.  Plainly put, OCD makes me feel embarrassed, ashamed and guilty.  But mostly its because an illness that' hard for people to understand.  I'm not so much embarrassed that I have it.  Its more that I'm embarrassed by the fact that OCD is poorly understood by others.  Its hard for you to get why I think and act this way.  And that makes me feel alone and can explain why those with OCD hide their behavior and suffer alone.  I hope that this letter starts to explain things better.  OCD is a monster, ripping it's way through the sufferers life and everone around that time.  It is a disease that affects sufferer and family.  Just please take time to educate yourself.  Visit the OCD foundation website, and read peoples stories.  Learn about my symptoms and what triggers me.  Learn about what I am facing, and what I am working on.  Realize that I don't want to have this and I am working hard to improve it.  It will be a long process and I need your support.  I want to fight this this thing, so we can all have happier times together....