About eighteen years ago I trained as a counsellor with the Multiple Sclerosis society. The training was by the psychologist Declan Roche who was in charge of the Rutland Centre. I got interested through a friend who was involved in running the MS society at that time. It was a two-year course and I worked as a counsellor on an ad hoc basis. The society set up ‘MS Contact’ which was mostly a telephone helpline. I trained as a telephone counsellor and also saw people who came in to the centre. We started self-help groups for people with MS and their families and I facilitated some of the groups. I worked for them for about ten years.
I also did a foundation year in family therapy because as with any chronic disease there is an impact on the family, partners, parents, siblings, and children. Everybody in the family is affected by any form of chronic illness. I acted as facilitator for these groups and a lot of the work was with family members as well as the person with MS. Chronic illness has a knock-on effect. Then as I got interested in widening out the whole debate, I went on to train as a psychotherapist in the Tivoli Institute and went into general private practice. Although I still do work for the MS society, I also work now with people with other disabilities and diseases like cancer.
I know it’s a huge spectrum but the same kinds of difficulties emerge with other chronic illness. Many of the people with cancer and Motor Neuron diseases feel they are facing certain death. Not so with Multiple Sclerosis, but the difficulty is that these people could be facing increased disability. They don’t know whether they are going to become more and more disabled, if they are going to use a wheelchair. Or they may be able to function well for the rest of their lives. But the uncertainty is huge. And the fear that that generates every morning thinking, ‘is today the day that I get out of bed and my leg goes from under me?’ The paralyzing effect of fear, perhaps the wrong word to use, but perhaps not. If I’ve learnt anything it’s about how our bodies exhibit so much of what is going on for us and how bodies that are sick accentuate stress and depression, that the body functions even worse because of what’s going on emotionally. Trying to find a balance between an ill body and the extremes of depression and fear is very difficult.
What’s so tricky in the psychotherapeutic work is knowing whether what I’m picking up from the body of the client is a manifestation of their emotional self or of the illness, or indeed both. For instance with MS, people ask whether MS causes depression or whether being diagnosed with MS causes someone to become depressed. This is similar to cancer patients. Perhaps the question is about what causes the body to exhibit stress? Is it the cancer? Or is it the fear and denial that causes the body to be like that?
To try to disentangle the two messages, I listen to people and allow them to say what is going on inside them. Rather than holding it in, I encourage them to let out what they’re feeling, what it’s like for them, and where in the body they’re feeling it. I get them to draw where it is and what it feels like. They use crayons and they make huge black swirls. It’s useful when the fear is too great to put into words. I find that drawing in different colours is beneficial. For instance a drawing with a lot of green horizontal lines and blue sky and lots of black and red, a sort of volcano underneath this tranquil scene is a very obvious and stark image. It feels like a huge maelstrom going on inside and there’s no other way to get it out.
I think that those who are physically ill are expected to be courageous, brave, quiet, and relatively unemotional and that is huge pressure. ‘You mustn’t upset your family or friends by being upset. You mustn’t complain. You mustn’t say how frightened you are or how angry. You’ve got to keep it all in.’ Putting on a brave face is a huge strain.
I worked with a lady who had cancer. It was very severe, she was dying. Her fear was of going into the Hospice and becoming over emotional and of letting herself down and of being too emotional for her family. So I said, ‘Well, why can’t you be sad and terrified?’ Being able to talk about it was wonderful. She spoke of her fears, not of being dead but of the actual dying and of how she emotionally could keep it all together. And then about what she would do about her funeral and her will and how she would give away the things she had. We went through all that. She couldn’t talk to anyone else. They all said, ‘no, no, you’re fine. You’re getting better.’
Doctors and hospitals all collude. There’s less collusion now but there’s still a pattern of saying, ‘we’ll just give you a bit more of this and you’ll be fine. You’ll beat it. You’re looking better.’ And to the relations they say, ‘don’t tell her how bad it is. She’s really fighting it.’ It’s because of our own fears we all collude. With MS, while it’s not to do with dying, the fear of sickness can make others leave the ill person. They deny that the person with MS is really ill or they just cross the road or become distant. The rejection is so awful and hurtful. So many with the disease feel guilty, that they’ve alienated people. It’s when people don’t speak about whats happening, or aren’t allowed to that the pitfalls associated with illness become most apparent.
There has been some shift in society about illness, particularly away from the view that illness was punishment. The idea was that if you had a child with a handicap it was a punishment and to be hidden away. I think the church played a part in that thinking. The idea was that bad things happened to you if you were not good. So that lurking in the back of a lot of people’s psyche is the question of whether the illness is a punishment A number of people say that their parents’ response to the illness or disability was, ‘you shouldn’t have behaved like that as a teenager. You brought it on yourself. You deserve it.’ It’s seen as divine retribution. The guilt of the person about what he or she has done to deserve this can be intense.
It’s through discussion for instance in psychotherapy that these boundaries can be pushed out. I think therapy is about allowing people to have their voice and that in this way they can become emboldened enough to discuss with their partner their frustration and fears about their illness. It can allow their partner to say, ‘yes, well I’m terrified too.’ So that both can cry rather than living in terrible isolation where they have to say that everything is fine.
I think that all clients present with similar difficulties. However for people with disability, everything is more extreme. So for instance, take body image. While everyone may have issues with how they look, if you have a body that obviously doesn’t conform there’s no denying it. In an age when sadly what a person looks like has become more and more important, it’s completely reasonable for someone with disability to feel frustrated and sad and angry because they really don’t conform to the norm of body image and they never will. It’s a normal human desire to want to have a partner and to have sexual desires. Yet there’s the thought within society that a person in a wheelchair can’t or shouldn’t want to have sex or a partner. That’s a huge, very unspoken about topic for many people.
In working in therapy with people who have chronic illness or disability, it’s important to open up the idea that they are not being punished. And that if they’re having a bad day, it’s ok to express that. The idea that ‘I’m already damaged so who am I to ask for love or a partner or to be desired?’ is very difficult. Many people with disability feel themselves to be marginalised, and quite isolated from society. They are more distressed and feel themselves to be quite invisible to others. And this increases their sense of distance. Not being heard, anger, denial, guilt, self-blame it’s all mixed in and compounded by physical disability.
As a therapist, it can be very distressing work, so I keep a balance in my practice. It can be draining. And it makes me angry to think of the unnecessarily greater struggle that this person is having to deal with by not being able to talk about the illness, by having to pretend that everything is ok, and by not being heard by the community. It would be much easier for them if they could talk freely to their loved ones. Some of my clients have died, either while they were in therapy with me, or afterwards. It’s sad because I become very fond of people. And yet I’m removed from them. I can’t go to the funeral and express my sorrow.
Currently I work one-to-one rather than with families. On occasion with someone who is newly diagnosed I may meet a family member initially but otherwise I work with the client only. Sometimes if the ill person doesn’t want to talk about his or her illness, the adult children of these ill parents will come to talk about their difficulties of coping. Or I would often work with the spouse of an ill person who is finding the situation extremely difficult. I try to balance my practice with more general types of client work.
I also see people with cerebral palsy who have had this condition since birth. They can be very angry at what’s happened to them and about how society treats them. It’s a terrible bind for people. With a chronic condition there is often only a finite amount of energy so the question is whether the available energy should be used to go to work and then go to bed. Or should the energy be used to see my friends and have a bit of life. What a struggle! Who am I? Am I just somebody who works or am I someone who has a life? ME is a very similar condition where the person looks all right. Yet life is a huge struggle of how to keep going with limited energy and yet stay in touch with friends. Do I stay in my room and watch the television? No one bothers to come or call and I feel even more marginalised. It’s agony. With increased exhaustion, there is a terrible dilemma of how to live. The question of the future is often one of dread. If the breadwinner is ill, how can he or she plan for the future or the future of the family?
I think the value of therapy is in providing a space where people can come and say how they really are. There’s never time to talk like this with the doctors and in hospitals and often the person with the condition doesn’t want to discuss the fears in front of family members. It’s often about giving the client permission to speak openly. Generally they start with practical things. It’s not that they are coming for therapy as such or to explore more about the self. It’s generally for practical help and an actively listening ear. And also a reassurance about the continuance of the therapeutic relationship in being available each week to just be present.
The end of the therapeutic relationship with people with chronic illness is sometimes through death. Or sometimes they may not sever all connections with the therapy. They may need to know that the space is still there. Yet it’s all about endings. The hope is that they feel they are better able to cope but I always leave a door open for them. It’s left rather open-ended in these particular situations unlike more regular endings of the therapeutic relationship. Many of these people are facing an ending through death that is rather more imminent than for others. It’s an ending that they can prepare for. And it’s possible that the ending in therapy might mirror their own death. The fear of uncertainty of death might be much more manageable by working through the ending in therapy. It might be possible to draw in all the threads of uncertainty about the future and let an effective end in therapy give a greater sense of control to the client. Therapy can help people to feel less panicked and deal with the sense that an overwhelming situation is sweeping over them. So planning his or her own funeral might be the only thing that someone can have control over. Through this a person might gain a sense of self, of personal autonomy and a sense of what they can achieve which in therapeutic terms is a huge success.
Victoria Lloyd works in private practice in the Family Therapy and Counselling Centre, Ranelagh and is currently serving on the governing Body of IAHIP.