Sunday, 14 December 2014

What I used to really think about self-management...

Working as a self-management coach, supporting others to self-manage more confidently, has given me plenty of opportunity to explore the barriers to self-management from the patients perspective. This has prompted me to reflect on my concerns as I embarked a few years ago on playing a new role in managing my health by taking a more active and helpful role… I've tried to think and be as open as possible about the concerns I had about self-management back then, and I'm aware that some of the comments below might have me have seemed (or still seem) like I am/was a sympathy-needing and mentally-unstable weakling, but it is my honest thoughts, shared because I hope they will help others help others embrace self-management. I make no apologies for that fact that this might be controversial, and that not all people will agree with me. These are just my experiences from a few years ago that I'm now ready to share. 


It means my health problems are all in the mind 
My biggest concern about going on a six-week self-management course was that it would work. Now before you send for the psychologists, let me explain! I didn't really understand what those six-weeks entailed apart from sitting in a room talking, so I thought that if it worked (i.e. if I felt better), then talking was what worked, so that just reinforced my fear that my condition and its impact on my life were "all in the mind". Self-management was just thinking better wasn't it, so I could think myself out of my illness, because they were all in the mind?!
A better understanding of self-management and the biopsychosocial model have (mostly) allayed those concerns for me. 

It means my health problems are self-inflicted
If my health is able to be improved by me doing something, it logically fits that me not doing stuff have made me ill, which makes me feel guilty for making myself ill. At a lesser extent, if I was able to better cope with my conditions, I would not be as ill as I am now, so have I inflicted the worse bits of my health on me (and therefore on friends and family). Have I been "crying wolf" and making a fuss over something which I could have put a stop to ages ago? This is directly linked to my need for sympathy. I've been making it worse for myself? Have I been playing the invalid role, when actually I wasn't as ill as I thought I was? These are big enough issues for me to face personally, but even harder to face the (anticipated) perspectives of others on.
I now mostly appreciate that it's about learning how to live well with my conditions, and I can't beat myself up about the path I took to learn these lessons. 

It means I’ve been wasting resources
There is enough guilt when you live with a long term conditions, before you even start thinking about our consumption on precious NHS resources. I'm aware I am a burden, and isn't that why commissioners want to commission self-management anyway? How would I cope without seeing my health care professionals?
Again, a better understanding of self-management "no man is an island..." (see old blog post)

What if I get it wrong - then I’ve only got myself to blame
The good bit about not taking much responsibility is that when things go wrong, its not my fault. How would I face and live with myself if I had made things worse? Again, would this lead to self-inflicted ill health?
Enter the concept of partnerships and shared decision making with my healthcare professionals. 
(... then wait for that to be a reality....) 

Too depressed to try anything 
Check out the list of symptoms for depression here.
And then these statistics on the prevalence of depression among people with long term conditions here.
Enough said.
Hello vicious circle.
Hello Rock Bottom, "something has to change"... 

It means leaving the relative comfort of a pity party and familiarity of my routine
Its hard being ill and fulfilling the invalid role, but it is harder to change. I had my sick person routine sorted, and feared anything that unsettled that and set me back days, weeks or more. Looking back, I had effectively created a brilliant glass ceiling for myself, for the fear of triggering a relapse or anything worse.
I had to acknowledge my fears and gently take my first steps, and realising that my routine is still important, but to take into account my physical and mental health and social life equally.

Then, as I embarked on my journey to self-manage...
I’m still having relapses so self-management isn’t working 
I was a bit stupid here, and I was guilty of thinking medically - no improved outcomes on relapses. But what I didn't think about what was how those relapses were easier on me emotionally and socially.
Making sure I had the right definition of self-management, as not curing me but helping me live better with my health conditions.

One by one, each of these barriers didn't fall, but my understanding meant they weren't barriers anymore, or I felt confident that they didn't matter. 

1 comment:

  1. Lovely words as ever Anya! I was 'ill' for 2 years. Self-management has meant that I've slowly become well. I do what I can...no more... No less just what I can. X

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