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Jo’s Story

I have two daughters who have struggled with their mental health, but it was because of my youngest that I reached out to the group.

My daughter is now 20, but has struggled with anxiety since the age of 9. Things became more tricky around the age of 11/12. She started to restrict her food and up her exercise – she was a county level swimmer. We were seen by the GP for regular weigh ins before CAMHS would accept her. The more she restricted, the more she exercised. 
Eventually she was an urgent referral at 13. She had to be withdrawn from school and all clubs. I had to reduce my hours at work and start to be my child’s feeder. We would spend the whole day battling and crying over food and fluid. Begging, pleading for her to have anything. I resented the illness and hated what my family had become. At 14 she was admitted to an adolescent ward – the start of our nightmare journey. At that point I didn’t think things could get much worse.

For the past 6 years we have lived by a meal plan. The eating disorder was the tip of the iceberg. We are currently on our 9th admission for her mental health. Life went in to free fall after she disclosed abuse – the driving force behind her illnesses.

This journey has been a steep learning curve. I’ve learnt information that I’d never dreamt I’d need to know. One of her consultants said to me that “ those that shout the loudest get the help” and unfortunately that seems to be the case. I’ve learnt not to sit back and wait for the professional services to kick in.  I’ve also learnt that that are more than willing for me to do their roles. I stopped being Mum and became my daughters carer – a role I resent at times and I mourn the relationship we had. This illness and the abuse stole my daughter and replaced her with someone I don’t recognise at times.

My family is far from conventional. I learnt that it’s ok to buck the trend. That’s schools only care about their tables and not the individuals. The best thing I did was withdraw her from school. We quickly decided that we could work on education later – the priority was making sure she was here to do it later. We met some amazing staff in CAMHS along with some not so good ones.

I thought CAMHS were bad, but then we transitioned to adult services! My daughter became a service user and not an individual. That phrase I use lightly, as there were no services to use. We went from 2 weekly home visits from her psychiatrist as she was so unstable, to 1 meeting every 3 months at a building that triggered her.

Currently she is in an adult unit 4 hours from home and has been there for the past 14 months. This was the only unit in the country to accept my daughter, who felt they could support her complex needs. She’s just graduated from DBT and we are currently fighting the system to fund EMDR for her to do there.

Due to this journey we are following, I’ve learnt not to take no for an answer when it comes to my daughters mental health and what we feel she needs and deserves. I refuse to let them treat her as a bottom line figure.
I’ve realised I’m far more resilient than I thought I ever could be and that I can write a mean email or letter! I’ve dealt with situations that I never dreamt I’d have to and come out the other side. I have days when I think I can’t do it any more, but deep in my heart I know I can.  After all if I don’t fight for my daughter, who else will?

I never in my wildest dreams thought my life would map out like this. But I wouldn’t change it for the world. Mental illness has made me a strong person, a fighter. I’ve learnt to stand up for myself and my family. I’ve learnt to trust my gut instincts.
  We know our children better than any professional. Trust is crucial. Early on I promised her that I would be honest with her about treatment and what was discussed in meetings.

Mental illness is an extremely isolating illness, not just for the person experiencing it, but their family too.  I made a decision early on, that I wasn’t keeping my daughters illness a secret, nor the reasons behind it.  I strongly feel secrecy fuels it. If it was a physical illness we wouldn’t try to cover it up.

Through my daughters illness I found this amazing community.  I can be open and honest, knowing that there will be someone who “gets it”.  It makes me feel less alone. I’ve made friends far and wide, friends for life.
Thank you PMH!

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