OCD Action

Unregistered

I wrote part of this message on one of Sarah’s threads, but decided it was wrong to include it there, because I was deviating from Sarah’s topic.

Teresa had mentioned a friend giving her advice on how to overcome her problems. I may be wrong, but I don’t think there is any other condition where so many people (with and without OCD) believe they have a quick and easy solution to our problems.

Even my husband’s work colleagues have looked up OCD online, or heard parts of an interview with a psychologist, and declared they have the answer, I just need to follow their advice and I’ll be fine. I find this very patronizing. These people can be well-meaning, but it somehow makes us appear weak or unwilling to co-operate if we don’t suddenly improve. It’s amazing how quickly a person, who may not have even heard of OCD previously, will suddenly announce they have the answers to our every obsession. I have lived with OCD for fifty years. How dare such a person tell me a few minutes with my hands in soil will cure me!! Soil is one of my fears, and for fifteen years after this obsession began I continued to do the gardening. The fear never subsided. Another said that if I bought the most expensive soap that would put a stop to my hand-washing!

I have said here before, few of us want pity, we merely want some tolerance and understanding. It is a very depressing fact, that not only do we rarely receive empathy, but we encounter impatience and arrogance. So many of my friends have been treated by their friends (and often family members) as if they have chosen not to listen to sound advice on how to cure themselves and must therefore want to suffer (or wallow, as has been said to me, including on this forum by fellow sufferers). I don’t believe I have ‘wallowed’ that much in the five years I have been here, because often forum users ask what my obsessions are. However, I did go on rather about my mice infestation, but that was merely because I desperately hoped that someone could tell me how to humanely remove them. It wasn’t actually an OCD issue and I apologize if it came across at the time as if I were attention-seeking. I learned a valuable lesson back then - it’s best to keep one’s own particular obsessions off the forums and concentrate on others. (I was also deeply hurt, that after years of trying to help other people, I was judged when I was desperate).

The last month has been particularly stressful for me. In between battling many of my fears I have been reminiscing over the past fifty years. I have been re-living my past therapy and many situations I have faced which have literally terrified me.

This will sound rather bitter and it isn‘t meant to be at all. I am always pleased to hear that a person has improved due to therapy (or medication) but unfortunately the positive effect of therapy etc does lead to problems, even amongst fellow sufferers. The reason for this is that the positive response many experience, following treatment, adds weight to the argument that we will all respond well if we want to badly enough and if we put enough work in. I don’t know why OCD differs so greatly from other illnesses in this respect.

I wish my efforts could be viewed on some form of recording, including my thoughts (I include thoughts, because some people say I am not thinking the right things during exposure and that‘s the reason for a lack of improvement!). This is not a narcissistic request, I am not by nature an attention-seeker. However, it would be the only way to silence those who feel I am not trying hard enough to overcome my OCD. A recording would also be required to measure the level of fear experienced. As such a recording is impossible, sadly those of us who fight daily to exist with our OCD will continue to be judged and found lacking in courage and determination.

If treatment fails to help a person with another condition, few would judge and condemn the patient. They would say that unfortunately the treatment didn’t work for that person. In our case, it’s down to us and us alone (according to many) if we remain trapped in our obsessions.

I am not envious that others have improved. I am certainly not bitter that they have when I have not. I can graciously accept this and feel genuinely pleased for them. What I am bitter over is being judged and found to be failing, when I have given overcoming this my all.

I have battled through another week of horrendous chores and overwhelming contamination fears and am sick to death of being judged. It’s almost as bad as living with OCD. As Shakespeare said, ‘Everyone can master a grief but he that has it’!

By the way, the professionals who claim anxiety never harmed anyone are wrong!

Tue Aug 31 2010 13:22:31 #
swan
Member

Hi,
I agree, I was really distressed/angry yesterday and emailed someone, I havn't re read it so Im not expexcting a reply, but it would be nice to get one. my new social worker is very supportive and encouraging, but my friends are not, even someone who I told recently that I had OCD told me that tye knew about OCD because they knew people who had it and the impresson they gave me was that I did nt have it as I work and I didn't have the same OCD as the people they knew. My aim is not to speak about the ocd again to them as I dont think it will help at all but feel really bruised.
the difference between a physical condition and a mental health one is huge and I feel that Im a second class citizen, I even feel it is wrong to phone email people, as usually dont get a response becasue they dont know what to say or they are busy and well they have said it all to me before.
I could go on but its so ingrained in me that Im a nuscience that I will stop now.

Tue Aug 31 2010 16:04:04 #
sarah81
Member

I think many people with mental health conditions feel that they don't receive understanding and tolerance. No one would blame a cancer patient for failing to respond to chemotherapy, yet it seems to be viewed as more of a personal failure if one continues to suffer from depression, OCD, eating disorders, etc, despite receiving treatment.
Tricia, I have had plenty of house problems, so if you ever need to rant about those, feel free to message me! Mold, mice, leaks, carpenter ants, faulty plumbing; we have had all of the above. They can be very disturbing, sort of a mix of fears of contamination and financial ruin combined...

Tue Aug 31 2010 16:24:45 #
aishah
Member

Hi Tricia,

I completely empathise with you, your's has been an extremely long struggle.
I understand what you mean about people thinking this is an easy thing to get over and that if we follow everything that we have learned through CBT then we will be ok again.

I have had several courses of CBT as you know, and the most recent at CADATS. My cleaning compulsions are most definately under control for now but the obsessional thinking, intrusive thoughts, depression and now excessive eye blinking is a whole lot worse.

So right now I feel that I wasn't successful with my most recent treatment. I think when the depression sets in then it is extremely hard to put into practise the techniques that we have learned through therapy, for me, it seems impossible some days.

I really admire you for trying to help others despite your struggle, I feel guilty about not being able to help others on the forum at times when I am struggling as I don't want to bring others down. You always remain positive despite everything.

I often feel also that people don't understand too as they can't see the pain we're in. I saw a G.P. that doesn't know me a couple of weeks ago and he obviously hadn't read my notes beforehand..He asked me if I had considered therapy instead of medication, I informed him that I had just completed a long course of CBT and he said "theres not much else I can suggest then".

I came away from there feeling hopeless, maybe that's one of the reasons for my depression worsening...I don't know.

In terms of anxiety, anyone who has experienced this on a daily basis knows how debilitating it can be, feeling that you are going to choke at any moment and not being able to breathe, it stops me in my tracks all the time. I still try to carry on but it's getting harder to do each day.

I wish you well and hope one day soon things will improve for you, you deserve it.

Love from
Bridget
xx

Tue Aug 31 2010 19:27:16 #
Unregistered

Dear Tricia

As you know, I have met others in the U.S. with extremely severe contamination OCD who are in your position. Not everyone responds to CBT/ERP, and meds (even if they do work) can have very bad side effects. It is also difficult to get surgical treatment if you have had no success with CBT/ERP. So you have a right to voice your opinions.

I know I was really lucky in the end to find a nurse who pushed the right buttons when I went to The Bethlem. I had had many unsuccessful rounds of therapy before that - some of which actually made my OCD worse. But it took leaving my job, studying, paying for homeopathy and finding a few friends to push me to get my control- and even then it is up and down nowadays. I personally believe that the longer you have had OCD the harder it is to get control. Some research I have read backs this up.

As regards the mice, several of us contaminationers have been faced by this problem and have shared your feelings of empathy towards the mice too. When mice invade your house it is truly disgusting. My OCD went haywire, but both my husband and I could not kill them. We actually let one out of the mousetrap. We had to put our fingers in our ears when our newly acquired cat Rupert routed the nest. So all your threads on that were perfectly valid and also rather helpful.

I have sent some pages from the OCD Research Clinic in Columbia, Us (forwarded to me by Niki). I think they are heading in the right direction with their research. Hope it helps a bit. I would love to participate in some of their current studies including one on genes research.

I am right behind you.
Much love
Anne

Wed Sep 1 2010 9:50:01 #
Cuthbert ffoliott
Moderator

I like the posts in this thread a lot. I try to see it this way: our free will (well, assumed free will exists at all) has a dysfunction. Not that we cannot express what we like and want, mind... and our morality is functioning very well. But the dysfunction is located in brain parts that limit feelings of anxiety, so that we cannot move over to lesser taxing thought patterns; and also in brain parts that say: enough is enough, when we perform our compulsions.

The sad thing is that it is by definition impossible to convince those that don't have OCD at all, what we have to deal with. OCD is a condition that drives people apart. When another says: hey, you must exercise a bit more will power, and you'll be all right! - than that is very insulting for us. But that person may not be as arrogant as we feel him/her to be. We have trouble in making clear that OCD usurps one's energy; indeed, for a lot of patients OCD is just as taxing as a full day job.

We live on a different planet. It is a sobering thought, but: initially, we must not expect that these different worlds can become one. It needs hard work, and dignified quiet explanation, to clarify our position to others.

The main goal as I see it, is making it clear to first-line professionals, e.g. GPs, what OCD is, and how it impairs life. We need support from the medical profession. We need the end of the belittling of our problems.

Wed Sep 1 2010 13:12:05 #
swan
Member

I have an excellent dr but even she said she didn't know what to say to me last month.
The issue of people not accepting judging ect is making me more depressed than ever.

Wed Sep 1 2010 15:02:33 #
sarah81
Member

This is from the point of a very young, not even fully qualified, doctor, but at least in my program we've had a lot about OCD. We also have one member of the class who has been very open about some of his habits, which may or may not be OCD. He stood up during one of the lectures and said he could not EVER imagine being able to touch a doorknob and then go and eat his sandwich right away, as he sees other classmates doing.
I think maybe older doctors can be lacking in knowledge/understanding of OCD, but I have hope that younger doctors being educated now are, for the most part, adequately knowledgeable about OCD. This is naturally from a Scandinavian perspective (and a super health care system).
The level of empathy/understanding one receives from the GP is also hugely dependent on the GPs personality and interest in psychiatric disorders.
Cuthbert, very interesting post you wrote.

Thu Sep 2 2010 6:34:33 #
swan
Member

I do have a really excellent dr think she was just saying that sometimes she doesn't know what to say I appreciated her honesty.

Thu Sep 2 2010 9:14:35 #
Unregistered

I do apologize for the above rant. I went on rather, although everything I said, unfortunately, I still mean!

Cuthbert, I am sure in many cases, those who claim to have read or heard something that will lead to a cure are well-meaning. However, I have come across arrogance in the extreme from a few such people. When you have battled with a condition for as long as many of us here have (one of my friends has had OCD for over sixty years) it seems quite incredible for a friend to believe they have suddenly read of the cure, which we, over all these years, have overlooked! For me though, the greatest distress occurs within our own ranks. It is fellow sufferers, who should know better, who have labelled me weak and pathetic. This hurts far more and makes me despair. If our ‘own’ cannot have empathy, then what hope for the rest of society?! Yesterday, I lost a friend who read my sexual thoughts thread. She is disgusted with me. Alas, she has OCD. You are right, Cuthbert, it is as if we live on a different planet, but one where it seems we don’t even understand each other.

Teresa, I know you feel exactly like me, you just want some understanding and less judgement. I also have an excellent doctor and I am extremely fortunate in that he could not have more empathy. He has far more understanding of OCD than most psychiatrists I have seen. Two of whom have been incredibly intolerant. The psychiatrist I saw when I was seven actually became quite cross with me. I don’t know what I’ll do when my GP retires. I was having problems with the menopause in the spring and phoned my doctor for advice. I explained I am too ill to leave the house at the moment (I would not expect or be able to cope with a home visit). My GP had taken the time to read my notes, going back to my childhood. He was almost in tears and stated that my life is, and has been, hell. So many doctors regard OCD as a trivial condition. He doesn’t, he actually understands that it ruins lives.

Teresa, I would also feel very bruised and I can understand your reluctance in mentioning your OCD to certain friends again. I have experienced similar and, like you, I no longer refer to my condition to certain people. One very good friend recently announced that there is absolutely nothing wrong with me. Apparently, the psychiatrist I saw at seven brainwashed me into believing I have a problem. All I have to do is repeat this to myself and I’ll be fine!! As to the person saying you work and implying you don’t have OCD etc - how offensive! Many people with very severe OCD battle on and hold down a job. It seems to me that we can’t win, if we are on benefit we will be criticized, if we work then there can’t be much wrong with us! One of my friends worked most of his life (took early retirement in his late fifties) and his OCD was very severe. I just admired him so much for making such an incredible effort. I admire you, too, for the same reason. Also, you are not a nuisance. We do get brainwashed, but into a mindset of guilt, embarrassment and shame.

Anne, thank you so much for your words of support and the pages you sent. I’ll look at them shortly!

Sarah, You are right, no one would judge someone who didn’t respond to chemotherapy. I even have friends with bipolar who are treated better than those with OCD (with more tolerance and understanding, I mean). I believe I told you about the cardiologist a friend of mine saw recently. He thought his young son might have OCD and was asking my friend her view. What was alarming was that he thought OCD would be a positive thing for his son to have. This doctor was relatively young, so the message is not getting through to the medical profession in the States. I had heard the Scandinavians have a top rate health care system.

Bridget, Bless you, but I am not being too positive right now! Hopefully I’ll bounce back, but maybe old age and a jaded view of life has set in?! A psychologist I saw recently had a good moan about the human race and I have to admit I am coming round to his viewpoint! This man also pointed out that even the professionals have no clue as to the extent of pain involved in OCD.

I am so sorry that the progress you made has been marred by the intrusive thoughts, depression etc. I don’t want to paint a bleak picture, but certainly in my case, and I am sure many here feel the same, an anxious personality is the root of the problem. Even when I overcome a fear by confronting it (and this approach seems to be failing at the moment anyway) another problem rears its ugly head. We need something to tweak our anxiety back to a ‘normal’ level. A friend told me about an American study where mice were treated (unsure with what!) and they lost all fear of cats. I would like to spend the rest of my life being fearless!

I know I had a moan about a certain research centre, but I still have my hopes pinned on scientists finding a cure. Some have been very optimistic that it’s not too far away. Wouldn’t it be wonderful to keep the forum going after the cure is found, we would be able to share our wonderful experiences. One thing is for sure, this condition has made us appreciate the very simple things in life. Peace of mind isn’t costly, but at the moment it’s unobtainable for most of us! We could also reminisce about the unbelievable things our OCD used to drive us to do!

Love, Tricia x

Thu Sep 2 2010 14:08:32 #
Unregistered

P.S. I’ve realized my comment about bipolar was worded badly. I just meant another mental health issue receives more understanding than OCD.

Thu Sep 2 2010 14:44:33 #
swan
Member

Hi,
I agree with what you have said and don't feel you have ranted at all. I value you as a friend and dont feel on my own. Take care

Thu Sep 2 2010 17:13:20 #