Psychological Interventions in Chronic Illness?

I follow and talk with a fair amount of disabled people and disability rights activists and I’m starting to notice that many are deeply deeply distrustful of doctors that suggest that a psychological intervention could help them. I know at one time I used to feel much the same and over the last year or so I have changed my mind. As I think the whole area is really problematic and potentially damaging so I have decided to write a little blog post to try and unpack some of the issues around it as I currently see them.

One of the first things many wish to impress on me (when talking about their disability/chronic illness) is that they are not making it up. I understand the urge to do that. In my daily life I spend an awful lot of time being asked about my condition by doctors, the DWP, cab drivers, new acquaintances, old acquaintances, people from the council and many many more. Most of the time I get hit with an initial wave of denial by them, followed by eventual – if not limited – understanding. I’m sure many of my disabled readers, especially those with invisible or not very well understood conditions will be familiar with the following conversation;

“So if you don’t mind me asking, what’s wrong with you?”
“I’ve got a lot of abdominal damage from multiple surgeries.”
[insert queries about my need for mobility aids]
“What do you do then?”
“I don’t work. I can’t.”
“There must be something you can do.”
[insert a long explanation about why I am unemployable until the penny drops]
“Oh, I’m really sorry.”
[uncomfortable silence]

All throughout it you are placed on the defencive. You are made to explain your condition, the effects it has on your life and how limiting it can be. Of course the majority of it actually stems from the ‘questioner’ not wanting to believe that serious disability can just hit out of the blue. Most people know it is some thing that can happen, the same way they know they could kill someone by speeding. They simply don’t believe it will ever be them and being face-to-face with someone telling them “I was like you until ‘x’ developed, now I can’t work and need ‘y’ assistance to do simple tasks” makes them feel uncomfortable. When they feel uncomfortable they try to ease that by doing things like denying there is a issue, trivialising it, trying to determine what we did wrong (often morally) to deserve it or they start to focus on the nitty-gritty of our chronic illness Columbo style.

Whilst this may make them feel better, it makes many of us feel like they don’t understand or don’t believe us. In the long run it makes us more defencive each time it happens.

Many of us will have also had mis-diagnosis in our past. We all know a CFS sufferer who was wrongly thought to be malingering. My chronic pain was put down to my PTSD until scans combined with my medical history proved otherwise. I know a chap with rheumatoid arthritis that was initially told it was an old sports injury and should simply be ignored. We’ve fought tooth and nail for our disabilities to be recognised and to get a level of acceptance and consideration.

So, when the day comes that one of your doctors pops up and says counselling or anti-depressants can help with our condition we think… Wait a second! We have a physical condition. Those treatments are for mental health issues. We get angry or depressed because once more it seems yet another professional is trying to say it’s all in our heads. It sounds like they are undermining our diagnosis.

The thing is, I actually believe that is often not the case. I believe it is simply sloppy communication from the doctor combined with a certain level of (natural) defensiveness on the patients part.

Having a chronic condition or disability is very often stressful in itself. Pain causes mental stress in most. Not being able to get up because you are simply to exhausted to move also causes mental stress. Not being able to make it to the loo, get your mobility aid into a shop, wash yourself or make a glass of water when you are thirsty all cause additional stress. I don’t believe that most would argue that point.

Stress and the low-moods that come with it are draining. I don’t think many who have dealt with either would argue that either. They impose a spoon-tax on everything making each activity a little more costly. If, through pacing, you’d normally be able to cope with getting dressed, making lunch, doing some painting and visiting family in the evening when you are psychologically stressed you may only be able to manage two of the four.

This suddenly makes managing psychological/ mental stress more important than ever before. It’s also something that most of us are not trained to deal with. It becomes vital if you want to live to the fullest to find away of managing not only your pain/ fatigue but also balancing your mental health. This is where counselling, CBT and anti-depressants can come in. Fenton & Stover (2006) wrote a paper showing links between mood disorders and those with cardiovascular disorders or diabetes. It shows the way that living with a chronic condition can make developing a mood disorder more likely. It makes a case for doctors pushing for holistic care of both the body and the mind.

In my experience I’ve found that when basic CBT is packaged as a Pain Management programme or Expert Patient Programme for people with chronic illness then patients will accept it as helpful. When it involves going to see a overt member of the mental health team they get very upset. I think there are a few reasons for this;

  • The defensiveness most people who have chronic conditions (especially invisible ones) build up whilst fighting daily for recognition.
  • Poor communication from medical practitioners who don’t explain CBT etc… are being offered to help manage the patients mental well-being whilst they try to live with with a stress inducing condition. 
  • Doctors not recognising that the patient will have probably built up a defensiveness around the issue so they don’t take it into account when suggesting management techniques.
  • Sometimes there is also a lack of recognition that not everyone needs help managing mental well-being.

I believe that we need to accept that living with chronic conditions and disability in a disablist society will naturally cause mental stress and that psychological interventions are often a very good way of managing that stress. Knee-jerk hostile reactions to doctors saying CBT or therapy can help manage life with CFS/Chronic Pain/Diabetes/life after an amputation/MS etc. will not help anyone. It also belittles those who have found help through those fields which is bad form. I’m not saying it is something that everyone will benefit from psychological interventions that would be foolish. It would be like saying all people with mobility difficulties will benefit from a wheelchair, it simply isn’t the case. What I am calling for is two fold;

  • I would love to see campaigners and people with chronic conditions/disabilities no longer automatically assuming that any mention of CBT or other interventions designed to help manage mood is the medical profession denying or minimising chronic illness/disability. In some regards, the push to try and help people get a early intervention is a direct acknowledgement to how difficult living with them can be.
  • I also would like to see better training of medical professionals to help improve their communication with patients who have chronic illnesses or disabilities. Especially with regards to suggesting ways of managing conditions and the heightened risk of developing a mood disorder for those with long term illnesses & disabilities.

Fenton, W. S. & Stover, E. S. (2006) Mood disorders: cardiovascular and diabetes comorbidity. Current Opinion in Psychiatry, 19, 421–427.

* For those who don’t know what CBT is here’s a very quick explanation. CBT is Cognitive Behavioural Therapy. It is the idea that feelings/emotions, thoughts/cognitions, and actions/behaviours are interlinked. It looks at the way feeling crappy because you are in a lot of pain can lead to negative thoughts which can lead to us behaving in negative ways (like trying to push ourselves to do too much, ignoring sound medical advice, treating others poorly, self-harming etc…). There are academic criticisms of CBT but none are of the basic tenants (emotions-thoughts-actions being connected). They involve worries that it doesn’t help as well as other interventions with regards to serious psychiatric disorders like schizophrenia or bi-polar disorder. They also suggest that the focus on it is so strong it makes getting funding to look at other possible interventions difficult.

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