CBT: My Experience
I have a Personal Health Insurance (PHI) policy from the company I work for, and not long after getting ill I was visited by one of their medical representatives. In the course of the visit he asked if I had heard of or tried Cognitive Behavioural Therapy - CBT. I didn’t know anything about it so I looked it up on the Internet. Most of what I found didn’t seem as though it could help my condition. It seemed as though CBT was a treatment for depression and other mental health problems. I felt that M.E. was a physical illness and was upset to think that my PHI Company thought otherwise. I felt as though they were suggesting I had thought myself ill and could think myself better. Although I had a lot of doubts, I mentioned CBT to my doctor the next time I went. I did this only because I thought that if I didn’t follow up the suggestion they had made they might decide to stop paying me. My doctor was quite negative about the treatment as well, but said he would speak to the hospital about it.
About 18 months later I received a letter from the hospital asking me to complete a questionnaire. I did and sent it back to them, and again heard nothing for a few weeks. I then got a letter asking me to visit the department for an informal chat to see if CBT could help. The chat was mostly about how I became ill and the progress of the illness. They asked why I felt I got ill, so I said it was because I had Glandular Fever; they also wanted to know how I felt my treatment had progressed and if I understood what the doctors were telling me. I said I didn’t as at that point I had seen various doctors within one clinic and each had said something different. One said I would feel ill because my Glandular Fever titres were ‘off the scale’, and the next would say that although I had had Glandular Fever it didn’t make a difference. I left that meeting still not sure what CBT was and how it could help, but decided just to wait and see what happened next.
A letter arrived from the hospital advising that I had been accepted for CBT and giving me an appointment date. I went along to the appointment feeling quite nervous and unsure of what to expect. My appointment was with a lady called Asmita, and for the first couple of weeks it felt as though all I was doing was going over my illness history again. I have to admit I wondered why I was bothering to go. I was asked what I expected to get out of CBT and replied I had no idea, as I didn’t understand what CBT did but would try anything that might help me. I do remember saying that if she told me to stand in front of a mirror and tell myself I am well, we wouldn’t get very far!
Asmita explained how CBT shows the connections between thoughts/behaviour/physical feeling and emotions. The sessions would help me to see the links and recognize how maybe my behaviour had affected how I felt physically and emotionally, which in turn would affect my thoughts. For example, if I did something and the result was pain, then chances are I would think I won’t do that again. She explained that CBT was a way of looking for alternatives. I came out of that session feeling as though she was saying my reactions were all mental, and that by doing something, the pain I felt wasn’t real but was just something my brain had decided I should feel. Needless to say, I was quite upset about that as the symptoms I have are very real and so unpredictable that I couldn’t see how my brain might have decided to cause them. I talked the sessions over with my parents every week, and that really helped. They would tell me what they thought or how they interpreted the session, and that made me think about things a lot. I realized that if my brain was convinced my leg was hurting, then it would cause the pain to be there, just like people who have limbs amputated sometimes feel pain. At that time I still wasn’t really convinced, but thought I should carry on with the sessions. I felt that if what they were saying was right and I was right, then learning to alter my brain’s responses to my behaviour could help.
Now looking back, I can see I had a lot of negative thoughts about my illness. I was thinking things like:
- I won’t give in to this illness and be an invalid.
- Others are worse than I am, so I must be pathetic
- It’s selfish to think about me and how I feel all the time
- I’ve started a project so I must finish it as soon as possible
CBT helped me put these thoughts into perspective in a way that could help so they became things like:
- I won’t give in to this illness but I will do everything in my power to make it easier to cope with whilst getting better, rather than fighting it.
- Yes, others are worse than me, but that doesn’t mean my illness isn’t real and that the pain and problems aren’t there.
- Some ‘me time’ is needed to cope with this illness; I’m no use to others when I’m exhausted and in pain, so taking time out to rest helps.
- Ok, the project does need to be finished, but not necessarily right at that minute, and a rest first won’t harm the task but will help me do it without repercussions.
Now these thoughts seem sensible to me, but at the time I hadn’t realized how much pressure I was putting myself under to be ‘normal’ and not let people know I was ill.
I still have times when I start something and I’m determined to finish it before resting, and of course there are times when you can’t rest. If you are cooking a meal you can’t go to bed for an hour or it will burn! Most things, though, can be stopped part way through to allow for a rest or a change of activity from physical to mental, like tidying up or going on the computer. Ok, you are still doing things, but it allows one part of the body to rest whilst another works.
To help me see these activities in how I was living, I was given an activity schedule to fill in each week. At first it was based on mood/emotions and fatigue levels. I found it quite hard, as my mood didn’t really change much, so I was constantly putting ‘happy’. After a while we moved on to rating activities as light/heavy/rest and sleep. So a heavy activity would be something I had to work at, like driving or tidying up. It covered both physical and mental activities, so it would be classed as heavy if it was physically demanding or required a lot of concentration. Light activities were things like reading something that didn’t matter if I forgot, watching TV programmes I wasn’t too bothered about and things like that. After a few weeks I found that in my activity schedule I didn’t rest, I swapped between light and heavy tasks, but apart from that I slept. At no point in the day did I sit down and do nothing. I had thought that lying down for an hour’s sleep in the afternoon was my rest time, but soon realized that I was restricting rest time to a certain hour rather than resting when it was needed. Now when I need a rest, I will lie down and listen to the radio or watch something like The Hits on TV - just doing something that needs no concentration or effort on my part. My cat Amber likes these times as well, as she gets on my knee for a cuddle knowing I’m not about to move much.
Over time I realized that a lot of my behaviour was linked to early experiences in my life. When that was first mentioned I was really angry thinking Asmita was going down the stereotypical path of blaming the parents or upbringing. I soon found out I was wrong. The words blame and guilt were not mentioned. What she meant was if my parents reacted in a certain way to a situation, chances are I would react similarly, as that was my experience. When I thought about it I realized she was right. I have memories about my housebound Grandma who, when I was a child, used to think up punishments if we went on holiday. Ok, they weren’t terrible but we knew when we got back from holiday something would need mending, the curtains would need changing or something. I was determined not to do that to my family. I didn’t want to be a burden, someone who had to be looked after all the time, and I certainly didn’t want people feeling they couldn’t go and leave me because I was ill. That meant I wouldn’t ask my family for help in case they thought I couldn’t cope. I would ask for help for things I never could do, like problems with my car, but things round the flat I would just struggle with. I have to admit I still don’t ask for help much but now I will ask if I need help.
A lot of the CBT sessions were very personal and I spent a lot of time crying and thinking about what was happening. When I first recognized the pattern emerging between my thoughts, actions, and feelings, I was upset as I could see the cycle I was in but couldn’t see how to escape, how to change things to make life better. I am a very determined person, never willing to give up even if sometimes it’s counterproductive to my illness. I have had to learn that stopping and resting isn’t giving up, asking for help isn’t giving up, and saying I can’t do it sometimes can help.
Since CBT I have accepted this illness a lot. I will still try anything to get better and haven’t given up hope of a normal life. What I have done is realize that by being more careful about how I live my life, I can actually do more. Where in the past I would struggle to do everything at once then crash for days, now I spilt things up and rest, so the backlash isn’t as bad. It’s not perfect and I still do too much and have a crash, but now I recover quicker and don’t feel as bad. I will say, ‘No I can’t do that now, I need to rest,’ but I'll do it later, whereas before I wouldn’t have admitted needing to rest and just pushed myself to dropping point. These are small changes in some ways, but without CBT to make me think about what was happening I wonder if I would ever have reached this stage.
The main thing to say about CBT is that it isn’t a cure it’s a coping strategy, but it’s a good one!
If you would like further information about CBT please visit the British Association for Behavioural and Cognitive Psychotherapies. Please do not hesitate to contact me if you would like to comment on this article or to share your own CBT experience with M.E. Support. You might also like to read my other M.E. Support article entitled M.E. and the Single Person.