Hello everyone, I’m new to this site, and hope you don’t mind me just spilling my mind. I just don't know who else to speak to or what else I can possibly do.
A bit of background my little sister was showing signs of ED 2 years ago, it climaxed just after Christmas when she was taken into an eaten disorder unit as a priority 1 due to her slowing heart rate and dangerously low BMI. It still sends shivers down my spine seeing photos of her from that time.
For exactly a year she stayed at the residential unit, on and off tube feeds, in a wheel chair, self harming – it all happened, and as a family we got through it and were there for her, sharing visits throughout the week so she was never alone. I missed her so much. Most of the family took part in FBT weekly, which was tough on everyone. After 8/9 months it finally looked like she was ready to fight the ED and became stronger, eating what she was asked to – I also fell pregnant and I think this spurred her on to get out of hospital. Just before Christmas last year she was discharged as an outpatient, my beautiful, happy, confident sister was back. So for a good while things were looking up, and we all started to relax a little. Then six months ago, the food limitation started, she stopped having extras or started making excuses for not being in around meal times. She spoke to the unit but their attitude seemed to be, they were just waiting for her to get worse again so she would be admitted because the outpatient therapies they were giving her were not working.
Now for the last few months we’ve noticed signs that happened before her hospital admission – I think to be honest we’ve all been in denial thinking, no it’s just a bad day, but here we are again, she’s depressed, refusing to eat, becoming aggressive / upset if we try and mention it. The good friends who stuck by her, she no longer wants to see and people who are no good or have hurt her in the past seem to be her choice for company now, it’s like self harm in as many ways as possible.
I know I can never fully understand how my sister feels (I have been to conferences and family days at the ED centre) and without sounding selfish, I really don’t know how we can all get through this again, I am a new mum – working full time and I’m so worried it will break my poor mum if she has to watch her little girl go through hell again and take us with her. After all this time sometimes all I want to do when she cries down the phone “it’s not as easy as just eating” is shake her and say “I know but I don’t know what else to do or say – I just NEED you to be better, I want you back!”
Obviously no matter what we will all be there for her but we don't feel we have the support from the ED clinic. One of the nurses actually said to her once "i dont know if there's anything else we can do for you" You have no idea how terrifying that is when you think that if the worst does happen, there's no one there to catch you.
I know no one can fix this and the inevitable is about to happen - I just needed to write this. Sometimes talking to friends / family, this has become a topic that is just always going to be “there” or it’s an elephant in the room, I think people even tire of hearing about it sometimes and no one understands how devastating it is or how the smallest step (ie eating a square of chocolate outwith a meal plan) in the right direction can mean the world! I know it’s not easy on any family, but I literally don’t think mine can survive this again and I’m so scared. Thank you for reading xx