Counselling for people with chronic health conditions

I believe that counsellors don't need personal experience with a client's issues to provide effective support in the counselling room. If the client hasn’t mentioned their ‘presenting issue’ in advance it isn’t necessarily a problem – it may just take a little longer to get a rich understanding of the individual and what their presenting issue may be.

If our clients have more ‘specialist’ needs or experiences, however, I feel there can be real benefits at stake in having a lived experience which is shared, even if only in small ways, with the client in front of us.

I have a chronic illness, Multiple Sclerosis, which I didn’t have when going through my counselling training. I was only diagnosed in my fifties which I’m pleased about in that it didn’t affect me when my children were small. I managed to get a significant tranche of life under my belt, including extensive travel for work and pleasure whilst still relatively fit, strong and agile. I had a full-on career in London over several decades, which I would not be able to entertain now should I wish to (I don’t).

I’m not suggesting for one moment that seeing a counsellor who is living with chronic illness themselves needs to be the only counsellor of choice for all people living with chronic illness. Chronic illness takes many different forms and each will affect any individual in myriad ways: there is certainly no one-size-fits-all-all. There is a strong argument and evidence for the belief that ultimately, the client-counsellor relationship trumps everything else. I believe that too, but when searching for a counsellor in the first instance, seeking one with some experience of your particular circumstances helps shrink the counsellor ‘pond’ to a certain extent as a useful starting point in your search.

We are all unique and what helps me with my RRMS (relapsing-remitting MS) may not necessarily help the next person with RRMS or SP-MS (secondary progressive MS), let alone someone with fibromyalgia, COPD, or Parkinson's. Having said that, we all share experiences which are unique to the subset of the human race which is ‘those with a chronic illness‘.

Our partners and family members may well be sympathetic, but their ability to be truly empathic will undoubtedly be compromised because they don’t have the unique, visceral knowledge that only actual sufferers can have. Friends/family will also experience the frustrations of struggling to get GP appointments, but maybe not the same level of irritation when having to recount their medical history from scratch (yet) again, or having to make allowances for the brain fog, or debilitating fatigue which set in whilst they were in the waiting room. As one of my clients  with a whole range of chronic illnesses said of me “You just get it, you know what it’s like.”
 
The primary suffering is one thing – the receipt of the diagnosis in the first instance. What few without a chronic condition can grasp is the secondary suffering which follows and beyond. (I’d argue that there is a third, tertiary level of suffering too). For some people, CBT may well be found useful. For others, such as myself, CBT may be detrimental for its more rigid approach (or so it seems to me).
 
Having trained integratively myself (so encompassing elements of CBT and ACT approaches as and when they feel potentially of benefit to the client), I favour the incorporation of mindfulness mediation practises and MBSR (mindfulness-based stress reduction) for their focus on self-compassion and kindness; approaches reflecting my personal needs as someone living with a chronic illness. What could help more than giving kind words to yourself when faced with a few hours in bed because you’ve been steamrollered by fatigue or, in extremis, when faced with cleaning a public toilet when you’ve experienced a bout of faecal incontinence, or fallen over again in the car park outside the supermarket?

No one wants these experiences, and those who have to experience them probably don’t want to talk about them which is fair enough, but they can feed into the anxiety, fear, shame and sense of ‘alone-ness’: feelings I’d say represent tertiary suffering, - essentially the nitty gritty of the over-arching chronic condition. Many counsellors can provide support at the level of primary and secondary suffering but I would argue that it’s at this tertiary level, the nitty gritty, the nuts and bolts, which have to be experienced to be understood at a deeper, more visceral level.
 
It's not an easy subject matter, but the danger is it becomes taboo and is swept under the carpet when there are thousands of people experiencing something similar and who could gain from the reassurance that it’s OK and normal for those in the ‘people with chronic illness’ subset. Talking to someone who knows what it’s like, who ‘gets’ the medication and self-management struggles and who can talk with real understanding, kindness and compassion can prove to be immensely beneficial.