What Recovery Means To Me

When I first started work at HUBB, in June last year, I had never heard of the ‘Recovery Model.’ Neither had I heard the term ‘Service User.’ I was someone who had worked with people for most of my life, and because I had also experiencedmental illness, I felt I had something to offer, and that HUBB would be a place where I could be myself and open about my experiences, and not be judged. I have found all this to be the case. However, in the wider scheme of this, in my daily work, I come across aspects within the ‘Mental Health World’ that I have to sit and ponder on. Recovery is one of them. Why is this so?

Well I just assumed that we were all doing it, all the time! A bit like maturing,growing, learning from our experience and finding out about ourselves. Then I discover that there’s a model for it! I thought, what the hell is that all about? I also find out that there’s a ‘biological model’ too. And a ‘social’ model.

I have a condition known as bi-polar affective disorder, which I now manage successfully with medication. I can continue to get on with my life without the nagging worry that has been present for years that my mood will take a nosedive, or start rocketing.

My dad has a condition known as diabetes, which he now manages successfully with medication. He can continue to get on with his life without the nagging worry that has been present for years that his blood sugar levels will take a nose dive or start rocketing.

For both of us, our conditions are now a ‘small part of our Big lives.’

When we were first getting to grips with our respective conditions, we were understandably focused on them, as we worked to assimilate what it meant for us as individuals.

But the difference was, not in how we dealt with things, but in how others dealt with us.

People often confused my personality with my ‘symptoms’ One example is that I was taken to hospital in a manic phase of my illness. The accompanying social worker took me into the office. The nurse began talking to the social worker about me, and asking questions, as if I wasn’t there. The last straw was when she asked, “What is her name?” The social worker started to reply. I said, “Hang on a minute, why don’t you ask me I’m standing right here!”

After about four weeks, the mania was subsiding and I was judged well enough to leave. I was chatting to the nurse who I had seen on arrival. She said, “You are a lot better than when you first came in.” I asked her what she meant. She said, “Well, don’t you remember how rude you was to me in the office that day!”

I said to her, “No, you were the rude one, talking about me as if I wasn’t there. And I wasn’t being aggressive; I was being assertive, because actually that is how I am in real life.”

People also often confused my ‘symptoms’ with my personality.

This example occurred during one period of deep depression. I had been transferred to The Priory in north London due to lack of beds. Someone came to speak to me about the groups. They wanted to devise a schedule of groups that I should go to. I reluctantly agreed. I really wanted to sleep. I was in unbearable pain in my mind, and like being ill physically, when you just want to sleep that was how it was. I was sleeping 20 hours out of 24. I felt as if I was a wounded animal, and they were poking and prodding with a stick. I just knew that if they left me alone, I would get through it. But no, they began to threaten me. If you don’t attend these groups you will be sent back to the NHS hospital. So I reluctantly agreed to meet the CBT man. I needed some rigorous CBT they felt. So I remember sitting in the sunny afternoon, outside on the grass talking to this CBT guy.

He told me we could look at my depression. Why did I feel I was depressed? Because I’m depressed. How did I feel about the future? Terrible Perhaps we could look at negative thought patterns. What behaviour triggered off these negative thought patterns? Getting depressed. In the end I said to him, look. In real life me, I’m an optimist. Give me a glass with water in, and I will say it is half full. Not only will I say it, I will convince you it is too. I normally sleep eight hours a night. When I am manic I sleep 2 or 3 hours out of 24. When I am depressed I sleep 20 out of 24. These are the symptoms of my illness. When my brain regains its equilibrium, which given time, it should, I will be sleeping 8 hours a night, and thinking the glass is half full again.

Needless to say, I was transferred back to the NHS. However, I would have been anyway, due to how much it costs them at the Priory!

My point in relating these stories is this. Those people were getting paid to do a job. That job, as far as I am concerned, is to aid my recovery. In the two examples given, they failed to do this. They failed because all they saw was another patient in front of them. They didn’t see me as someone equal to them, with hopes and dreams and thoughts and fears who was enduring a phase of an illness that was cyclical in nature. I had to practically teach them about Bi-polar disorder – and I was in hospital!

In summary, recovery for me is this:

  1. Taking responsibility.
  2. Not being a victim.
  3. Becoming expert in my own mental health.
  4. Making plans for unwell times.
  5. Ask questions.
  6. Use the help that’s available, only when I need it.
  7. Don’t hide behind my diagnosis. If I am using it as a shield to protect myself from the world then I am doing everyone with that diagnosis a disservice.
  8. Never give up on hope.
  9. Find something meaningful to do as soon as I am ready.
  10. Use my valuable experiences in any way I can.

I’d like recovery for the ‘helping professionals’ to be this:

  1. Be an ambassador for hope.
  2. However scared I am that I’m not going to get better, be equally strong in your conviction that I will.
  3. Understand the various diagnoses fully, and how they can be expressed differently for each individual so you don’t get my symptoms confused with ‘me’
  4. Remember, no one gets ‘diplomatic immunity’ from mental distress, not even you.
  5. Be led by me. You would be surprised by what I know about myself.
  6. Think of someone you love, a daughter, a friend, a mother needing the support from another professional that I need from you. Treat me the same as you would have them treated. After all, I am someone’s daughter, friend and mother too.
  7. Ask about my hopes and dreams and plans, ask about what I have achieved – and hope to achieve.
  8. Encourage my independence.
  9. Don’t hide behind your job title. If I can’t see who you are behind it, then how can I expect you to see who I am behind my ‘diagnosis?’
  10. Be the best that you can be. Remember, I may be interviewing you for your next job!

In truth, there are no ‘models’ followed in mental health services consistently. Some people complain that it’s all about the ‘medical’ model, especially in psychiatric hospitals. If this is the case, why did so many people treat me as if I was my illness? Are people in hospital for treatment for cancer treated like they are their cancer, that they have no ‘cancer’ free past and no ‘cancer’ free future?

The social model makes me feel like a victim, when I am not. I can cope with far more than people assume, and flourish – and in fact I don’t want anything given to me on a plate – I prefer to work for it. Look at the list of social stressors – well I have been through most of them several times. They didn’t cause my ‘mental health problems’

And anyway, who would I be without my ‘manic depression?’ I love my colourful mind, with its range and depth. I have laughed my head off many times, and cried my eyes out just as much. That has always been me, diagnosis or not. No one tells you the positives.

So, Recovery. Let’s get rid of models, and concentrate on individuals. Who is this person? Where has she been before this? Where would she like to go? And instead of worrying about the help she needs to get there, give her the hope that she can do it herself.

Suzan Arisoy