Welcome to all my new followers. Thank you for joining me. Whilst it’s lovely to have you hear, it means though, there are more and more searching the internet to find support, resources and answers when facing an eating disorder.
Thinking back on our experience and what we have traveled through plus what others have shared, there is a list of things that aren’t told to you when you start this journey. You find them out yourself the hard way and often alone. Some come as a surprise, others you realize are normal but you didn’t think about it. So I thought I would list them, just so it’s out there and because medical support teams don’t tell you.
- You (the carer) are often the front-line and sometimes only line of care. Funding and resources can make it very difficult to get what you may need.
- This is going to be a long journey. You won’t just get well after the first ’round’. It will take years in some cases.
- You need to treat yourself for self-care just as much as you care for your loved one. It’s essential to survival.
- Your marriage or significant relationship will be tested to the max. Take care of it.
- This is NOT your fault. It’s not your parenting or your family. It is a genetic pre-disposition.
- How exhausted and OVER it you will be. How refeeding is draining. That you will have a list of appointments on a weekly, fortnightly, monthly basis that you might have to drive miles to.
- You will find yourself up against schools, doctors, clinics, friends, family. Most have a ‘warped’ idea of eating disorders. You have to explain and educate just to get the care your loved one needs.
- You will need to swat up on symptoms, treatment, research. No one else will teach this. As you are the front line you need to know this stuff.
- There are not enough resources or funds in place to provide what your loved one or you will need. That includes treatment centres and hospital beds. And a lot of written resources are often out of date (badly).
- You are not alone – even if it feels like it. There are many of us on the internet, facebook and other medias who are traveling this journey and can support you.
- Your child will become a totally different person – loud, rude, violent, abusive, manipulative and lies. This is the illness not your child.
- Logical, clear, rational thinking will not be part of your loved ones thinking. The illness is in full residence and they are not able to eat, care, stop or save themselves when they are very ill.
- When really sick, they smell. This really threw me. My beautiful daughter smelt like death – sour, old and decaying. The body is breaking down and the smell starts from a relatively higher weight than you think.
- Watching the lanugo (fine hair) grow on your child body. Also quite freakish for a parent. It’s the body’s way of keeping warm when there is no fuel to feed it or enough fat to warm it.
- Night-time heart rates go much lower than day time. Whilst doctors do the medical observations they only ever do day-time, standing and sitting ones. At very low weights the night-time heart rate is actually very scary and can be dropping into intensive care levels without you knowing it.
- Medical professional won’t know it all. Medications are one big area they are in the dark about. It’s trial and error, of sometimes many medications tried or grouped to find something that might work.
- That relapse is every parents nightmare, when in actual fact it can be monitored and cared for quite closely by an aware and caring team.
- There will be a before ED and an after ED state for your family. It will affect everything and the way you live and think for years to come – even when your loved one is fully recovered.
- Eating disorders are a family illness. It will affect all the members and relationships within.
- How quickly your loved one can develop an eating disorder and become critical.
- The blood results will stay ‘normal’ for ages then suddenly drop at the last possible minute. Make sure you have medical support around you.
- Hope is real and full recovery possible. Even good levels of recovery are better than the original illness.
- Associated and long term digestive problems, bowel problems, bladder problems, over health problems, teeth, bones, Vit D, Vit B, calcium levels.
- Despite all the pain, fear and the enormity of it all, you will be given strength to do this.
