Just like the saying, ‘put your own oxygen mask on first …’ the same is true for living with a chronic illness. You must care and nourish yourself, otherwise who is going to care for your child. You are the frontline attack and the best strength and hope, your love and support is essential to your child’s recovery. Look after yourself.
1. Read, read and read. I started out just generally Googling information. My reading is now getting very refined. I have also several research sites that I use that are highly recognised by medical professionals.
2. Read biographies of girls and their families. Yes they may frighten or alarm you, but you need to deal in truth and you need to hear and read the hope that these sufferers offer for recovery. No two families are the same, what some go through, you won’t go through, what works for one doesn’t mean it will work for you. What it does give is the knowledge that you are not alone, helps you understand some of what is going on in your child’s mind, and it may just give you the ‘key’ to understanding how your child feels and thinks.
3. Have a support around you, whether it is family or friends. People who respect you, care for you, who will listen, hug, feed or just be there when you need. You will find that you will lose friends and possibly family because they don’t want to understand.
4. Make sure the medical team around your child also support you and gives you time to vent and discuss your concerns. There should not be any support team that forces the parents outside and refuses to discuss the treatment of your child with you. Family based therapy means you are all involved, because the ED affects the whole family. The medical team, as well as your reading, will help you build yourself a toolbox to use when life gets tough and giving the correct response to a situation.
5. You may be lucky to live in an area that has group therapy and support groups meeting regularly. These would be a wonderful asset. I attend a small, casual support group that I and another mother setup. It has been a lifeline for us. Again these types of groups aren’t for everyone. Another option some of the Eating Disorder Assoc. run are email support or live chat services. It is worth checking out your state EDA and seeing what is available from them.
6. Find what works for you. Whatever you do it must be tailored to you and your family, having a support system that creates stress or extra running around just isn’t needed. Keep working at finding a treatment that works for your child and your family.
7. Get me time. Time when you are NOT talking or trying to think about eating disorders. Easier said then done I know. But if you don’t get time out, you wear out. When Sophie went into hospital both times, I found myself driving to the beach for walk as often as possible. It was one place I could just ‘be’. I have now added the ritual of a chai latte (I am so addicted to them) on a Saturday morning at my favourite coffee shop with the Saturday paper. Another hour of escape.
8. Find relationship time. You and your partner. Life goes on, marriage continues and if these areas aren’t cared for they can crash and break. A movie, dinner, walk, coffee, just something that you and your partner can reconnect your relationship without ED sitting beside you. Talk is particularly important, so you are both on the same page for each other and your child with their treatment.
9. Although most of us want to put our heads in the sand and pretend it is not happening to us – DON’T. It will make the support, recovery process harder for all concerned. Accepting what has happened and getting knowledge of this disease is your best strength. Don’t waste it.
10. Be flexible. If your chosen treatment isn’t working or what you read about isn’t happening with your team, be flexible. You cannot force something to work, so be prepared to lower your benchmarks and ideals. This way your child can heal in the appropriate way and time for them, and you have a more realistic outcome for all of you.
11. Get physical. I got back to walking particularly beach walking. Helped clear my mind. I also got into the garden during the tougher days. Ripping out plants and cutting things back really helped get rid of a build up of emotion.
12. Leave worry, fear and guilt outside. As hard as the situation, these feelings will only bring you down and lessen the way you function. It’s hard but it can be done.
13. Have some stock answers ready for ignorant, insensitive questions and comments you are going to get. Remember that most people have no idea about ED’s and just say whatever they think they know.
14. Learn to separate. Your son or daughter are not the eating disorder. The behaviour, things they say (particularly the rude, hurtful things) are not them . It is the ED. When you start treatment, the ED will fight for it’s tenancy, it will lash out both verbally and physically. It is far less stressful and hurtful to you, if you can separate your child and the ED. I have told Sophie many times, ‘that is the ED talking, I won’t talk to it. When Sophie is ready I want to talk to her’.
15. Find your own counsellor or doctor to talk. It really helps to have that separate space for you to talk through all your own feelings, weaknesses, strengths, fears etc. You need to learn your own emotional boundaries and when to step back to refill yourself.