CBT for RD… WAPOS!

The emotional impact of retinal detachment is an issue which is frequently discussed in my online RD support group.  Recently it came up again, and there was some discussion of the role of various forms of counselling in helping people to deal with the anxiety and depression which are often associated with visual impairment.  It got me thinking about my own experience of CBT (Cognitive Behavioural Therapy) with regard to this, so I thought I’d scribble a few things down…

It was the Occupational Health woman at my workplace who referred me for eight sessions of CBT with a local provider.  This was back in September 2015, not long after my return to work following surgery number five to fix the detachment which occurred less than two weeks after my surgery to remove the oil.  Needless to say, I wasn’t in a great place.  Feeling distraught and depressed after my hopes had been crushed by the fifth detachment, I was riddled with anxiety about my vision and my future.  I was grieving for the sight I’d lost and insomnia was my constant nightly companion.  Furthermore, there was talk of yet more imminent surgery, which I was quite frankly terrified of.  Knowing that CBT had a reputation for being very effective in treating anxiety, I leapt at the opportunity when it was suggested to me by the Occupational Health woman.  In retrospect, I should have known better.  After all, this was the woman who had – the first time I met her back in July 2014 after my first detachment – brusquely demanded to know why I was worried as I’d had the surgery and therefore of course my retina wouldn’t detach again.  But I digress…

Off I went to my first CBT session, feeling nervous but hopeful.  As I had expected, the counsellor asked me to talk through the events which had brought me there and explain what I hoped to gain from the sessions.  I said that I’d like to reduce my anxiety, particularly regarding my almost obsessive need to constantly check my visual field for potential symptoms, and also that I’d like to improve my sleeping.  It became apparent within the first few minutes that she had no idea about eye issues (unless you count the ability to apply thick gloopy mascara), but she assured me that she would definitely be able to help me and so I left that first appointment feeling optimistic.

The next couple of appointments included an explanation of the function of worry, helpful and unhelpful thought patterns, and discussion of what she termed ‘catastrophising’.  ‘Catastrophising’ was the word she used to describe my fear of further sight loss and ultimate fear of complete blindness.  She made it sound as if this was an illogical fear with no foundation, and that I was being over-dramatic in entertaining it.  I explained that retinal detachment leads to sight loss if not successfully treated and that as I already had significantly impaired vision in my right eye due to multiple detachments and surgeries, and I’d had two large tears in my left retina, this had caused me to be fearful for both eyes.  Her pat responses delivered in artificially soothing tones together with familiar over-use of my first name made it obvious to me that she just didn’t get it.

At the next appointment we moved on to coping mechanisms, as she enquired what I did to try and reduce my anxiety.  I listed talking to certain people about my worries, chatting to my eye buddies via the online support group, and writing my blog.  I explained that I had attempted meditation/mindfulness techniques using an online app and I also told her about my ‘eye book’.  This is the little notebook I take with me to all my hospital appointments, in which to record the information.  If I’m worried about a specific issue between appointments, I often refer back to this book for confirmation or reassurance.   She voiced approval of the fact that I already had a lot of coping strategies in place, and I left that appointment with a lighter step, feeling that perhaps I wasn’t doing so badly after all.

Soon after this came a discussion of insomnia and what I could do in order to try and improve my sleep (or lack of).  She asked me if I’d tried a warm milky drink before bed, or tried reading or listening to music.  Instead of saying what I was actually thinking, which was: “Do you really think I’d be sitting in front of you now if I hadn’t already tried all that?!”, I nodded, with a certain weariness which couldn’t be attributed to lack of sleep, and added to the list of things I’d tried: burning lavendar oil, lavendar pillow spray, eating a banana or cherries before bed, meditation/breathing exercises, a warm bath…  She appeared entirely ignorant of the soporific effects of lavendar, bananas, and cherries, and went on to suggest a few of her own alternatives which I might try.  It was December by this point, so naturally she thought that if I couldn’t sleep, I might find it helpful to get up and put up my Christmas decorations.  When I told her that I don’t tend to decorate my house for Christmas, she faltered slightly but went on to suggest that I could do something else instead, like the washing-up or a bit of cleaning.  (Clearly she had never been to my almost freakily immaculate house.)  “I do all that before I go to bed”, I told her, doing my best to maintain a polite tone.  However, she was on a roll, and went on to ask me if I had any pets that I could get up and feed in the night.  Again, I crushed the voice screaming in my head, “You Have Got To Be Kidding Me?!”, followed by the more reasonable observation that if I had pets and their feeding timetable was dictated by my insomnia, they would probably be dead pets by that point, due to morbid obesity.  Instead, I just stared at her and told her politely that I didn’t have any pets.  My face must have betrayed me somewhat, as she laughingly observed that I was looking at her as if I thought she was mad.  “How very astute of you.”, noted my inner voice, icily.

About two thirds of the way through our sessions, she wanted details of all the various visual checks I do.  I obliged, and she proceeded to draw up an action plan whereby I could only complete the various checks a certain number of times a day.  I tried to explain that this simply wasn’t practical – if I think I see something different or worrying, I can’t ‘unsee’ it and I will obviously check it.  A certain amount of checking is helpful for reassurance, but this kind of thing can’t be set down in a prescriptive fashion.  She didn’t seem to understand, and told me that although it might be difficult at first, it was important to give it a go.  So off I went with my piece of paper, feeling immensely frustrated and depressed by her lack of understanding.  Over the next few days I became so wound up by what I was and wasn’t supposed to check and how many times a day that I made the decision that it had to stop.  I hauled my cross-cutting paper shredder out from the cupboard under the stairs, plugged it in, popped the piece of paper into the slot at the top and watched with satisfaction as it was greedily devoured by the sharp metallic teeth.

When my next session came around, I simply explained again what I’d told her before as to why I felt that her approach was fundamentally flawed.  To give her credit, she seemed to take this on board, saying that we would need to find another method and that (horror of horrors), our sessions could possibly be extended if we needed more time to work on things.  She then changed tack completely and announced that she thought I had too many support mechanisms in place and was confusing myself by flitting between them.  Instead, she advised, I should concentrate on just a couple.  I told her that I wasn’t in the least bit confused and that different mechanisms were appropriate for different issues.  I gave her a few examples but by this point it was glaring obvious that she, like me, had pretty much disengaged with the whole sorry process.  I almost skipped out of my final session, my sense of relief that it was over matched only by my frustration and anger that not only had the whole experience been incredibly unhelpful and a shocking waste of time, it had actually made matters worse in terms of increasing my anxiety.  I’ll leave it to the reader to deduce what the last five letters in the subject title of this post stand for…

 

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9 thoughts on “CBT for RD… WAPOS!

  1. Stephen Rockey

    Sorry CBT didnt help. It can be quite good but very much depends on the quality of the professional who is doing it. Thinking of you.

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    Reply
    1. ejb117 Post author

      Thanks, Steve! Yes, I would hope that there are much better examples of it out there. It genuinely baffled me as to how the person I saw could be spouting such utter rubbish, so I find it hard to believe that it’s all like that.

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  2. Thuis bij mij

    Nobody really understands Emma. Except for those who are going through the same. Talking for myself, it always comes and goes. Mostly to me it happens every 3 months. Every three months I get the shivers and freak out. Scared that something changed my vision field. Most of the time it didn’t, thank goodness. Now I am awaiting for my YAG, of which I am scared as well. But I don’t have another choice because my vision is terrible at the moment and my surgeon said to go for it and give the gift of clear vision to myself. Xx

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    1. ejb117 Post author

      Thanks, Ellie. Yes, I know… it’s difficult! The anxiety comes and goes with me, too. Which eye are you waiting for YAG on? Do you have any idea when that will be? I can understand you being scared, but from what others have said in our eye group and from what I know about YAG, it should be a breeze compared to everything else you’ve been through. Keep me posted, won’t you? xx

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  3. Thuis bij mij

    I am waiting for YAG on my left eye Emma. The one that had three surgeries. I spoke with my surgeon because of me being terrified for another detachment to happen. He said to me I should see it as a gift to myself for all I have been gone though. That was in January. Now it is may and I think I am ready. I have an appointment May 22, for an eye test and to see the doctor. I think that day I will find out when it will happen. The vision I have now is getting really poor, especially the vision close by.

    How are you Emma? Still stable? Xx

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    1. ejb117 Post author

      The eye which had the very first detachment? Have you got IOLs in both eyes now? I know some people in the group have said that you’re less likely to redetach after YAG if you’ve already had a vitrectomy. I really hope it will all go well for you! What’s your vision like in the other eye now?

      I hope I’m still stable… my pressure was up slightly at my appointment in January and they were again talking about more surgery. My next appointment is 15 May, and I’m quite anxious about what they might say. Keep your fingers crossed for me and I’ll keep mine crossed for you! Xx

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      1. Thuis bij mij

        Yes the eye with the first detachment. And I got IOL in both eyes. I read that too, once your vitreous is gone it lessens the chance of another detachment, but still I am scared. Detachments don’t happen often in the first place but I did have many. So, I don’t feel confident.
        Vision in my other eye is not too bad. The center is gone, and I have peripheral loss on the left inner side (nose side) also I can’t see anything below either. But it’s good enough for me.

        May 15, I will try and remember that date. I wish you the best too ofcourse. How is your vision? And how exactly is your good eye. Still under control with the laser you had?

        I’ll cross anything for you Emma. Xx

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      2. ejb117 Post author

        Yep… I hear what you’re saying and can understand why you’re scared. When we’re already in the minority, statistics don’t give us much comfort, unfortunately! I think the most important thing is to try to find a surgeon that you have confidence in. Thank you… the vision in my bad eye is the same – loss of peripheral vision, I can’t read anything out of it, lots of distortion and blurriness. But it’s vision. 🙂 I had cryo to mend the tears in my good eye and so far that seems to be holding up. I have loads of floaters in it, as well as lattice degeneration and a cataract, so all that scares me but I’m just thankful to be able to function with that eye. Thank you for your support, Ellie! xx

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  4. Pingback: CBT in hindsight | RD Ramblings

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