The financial and emotional effect on our family of our daughter’s illness is not something we can quantify and there is no way to sum it up. It has been emotionally and financially so very challenging.
If it hadn’t been for the NHS, we wouldn’t have been able to access the care my daughter got; we couldn’t have afforded it. I was about to go back to work when my daughter became unwell, and I was not able to carry on with the training course and continue. End of job. I haven’t worked since our daughter's diagnosis. I always have the fear of letting someone down and not doing things to the best of my ability in or out of home. Family comes first.
Family counselling happens any time in the day. Not all employers get it and not all employees want to tell employers what is going on in their home lives – this goes back to judgements on family and stereotypical prejudice about anorexia. One mother I know said her son wasn’t eating “like some silly anorexic girl” – I rest my case.
Depression isn’t consistent, and you don’t know when the next up or down is coming, the next wobbly day or next suicide attempt. No employer would have me. My husband is the sole earner in our family. He contracts, so if he doesn’t work, he doesn’t get paid. There are days when I don’t know how my husband gets into work and acts like a normal person – his daughter tried to kill herself last night, but he still needs to bring money in. He does that bit and I do the maintenance bit. If there are any cracks in a marriage this illness will make them worse. We are lucky to have got through it, changed but still hanging in there. Other marriages I know have not.
Any parent would do anything to have their sick child get better, and there are so many times we have said if we could take any part of this illness away and take it on ourselves, we would. Our priority when our daughter was first diagnosed was and still is her and our three other children. On average, we made the hour-round trip between home and the clinic a minimum of once a day, sometimes twice for therapy and evening visiting, and on occasion, three times a day. We have no family nearby, and it was a struggle for some to understand my daughter’s illness and how best to help us. Our children are close in age and we are ever grateful to a few key friends who we told everything to, who helped us with childcare and “us care”.
Part of the therapy was cooking calorie-specific food (our daughter was white carb phobic), packed lunches for all of us on nice day trips out, family meals out for all of us. Things we did because we were told it would help our daughter – how could we not? The priority was getting her well enough to come home. We don’t normally eat out – we are a family of six, so it is expensive. There were times when financially this was a nightmare, and a lot went on credit cards.
Now she is vegan, while the rest of us aren’t. I cook the majority from scratch – a minimum of two different meals a day. When she is stressed, food is still the “I am not eating that” card she plays – it’s really tricky.
The emotional side – honestly, I can’t quantify it at all. I said to the admissions nurse at the eating disorder clinic that it was like a tornado going through our family and home. It still is, five years on. We are all permanently on egg shells, so tired of it all – it is our norm. Although many of the symptoms are not the same as at the beginning, we are on red alert and never able to relax. We fear for our daughter’s future and worry how she will be able to manage without our support.
I remember our ten-year-old son begging his sister to drink her orange juice (she had been given an eating plan to keep her out of hospital) – he knew she wasn’t well. She threw it all over him, screamed at him, and he still asked her calmly to drink the refill. He was so desperate for her to get better and stay at home with us.
All of our children have had counselling. All of them feel cheated of their childhoods as a result of this illness. They know it isn’t their sister’s fault. They have had to defend her at school, her absence (eight months in inpatient care), her suicide attempts, her body dysmorphia. It’s been so very hard for them.
The first day my son and daughter walked to school together after her discharge from inpatient care, their dad and I stood on our doorstep and cried. I will never forget it, and both of the children were so happy to be going to school together.
Our children’s hearts are bigger as a result. They have a better understanding of the impact of mental illness and difference as a result of their experience. What a rubbish way to learn this beautiful lesson. They have seen children so mentally and physically unwell, restrained, tube-fed, distraught at being away from family and under the grip of anorexia – I wouldn’t wish it on my worst enemy.
You just have to remember to be there for them when they need you and gently nudge them in the right direction.
I feel very lucky to have found a support group – but it would have been wonderful if this had been available more locally.
The right support and information helps family and loved ones understand, so they can provide the love and care needed for everyone.