This week my psychologist and I spoke about if I were to get well and what it would look like and my fears around it and to be totally honest I can’t remember what it’s like to be well. It has been over a decade of illness and nearly two years since I came into hospital after a handful of shorter admissions.
If I really try to imagine it I imagine a ‘well’ life to be quite good. I wouldn’t be in hospital and I’d be at home again with my family and my dog. I’d bake and cook meals and snacks for myself, I have hoards of recipes saved for when I get better and I can’t wait to try them out. I would enjoy eating, an idea that seems incredibly alien to me right now. I would go to ballet and help out with the younger classes. I would go to the beach with my friends and laugh the night away at karaoke. I’d watch telly with my family and go to the cinema with my dad. I’d play on the 2p machines at Barry Island with my mum. I would have my freedom back and I could go on walks alone, just my iPad and me. I’d experience new things, new foods, new places. I would live instead of exist. I would be able to be an adult although that absolutely terrifies me.
Everything about getting well is full of uncertainty and it completely overwhelms me. I’m scared to eat again, it’s been nearly a year since food passed my lips and it terrifies me to think of the day I have to put it in my mouth again. I don’t even know how my stomach would physically handle solid food after so long. I’m scared of the taste and texture and ‘greasy’ feeling food gives me. I’m scared to gain weight, to be fatter than I am now. I’m scared that none of my clothes would fit me. I’m scared that being bigger would make me hate myself even more than I already do. I’m scared of the responsibilities that come with life, I’ve got a lot to learn, and I’m scared of the day another of my loved ones dies, it feels unbearable to think about my mother and father dying. I don’t even think I could handle my dog dying. I need to reintegrate back into society and that scares me, even the thought of standing in a supermarket aisle terrifies me at the moment because I am so used to these four walls. I also worry that I wouldn’t have anything to blog about. My whole social media outlet is centered by mental illness and if I were to get well then where would that leave me? I’m not sure that I know who I am without all of this and the thought of being an adult terrifies me. I might be in my twenties but I don’t feel ready for that yet. What would I do for a career, I mean I don’t even have A levels, would I have to go back and study? A recovered future is full of questions. If I were to get well then I wouldn’t have a mental health team around me, these people I have known for years will not be in my life anymore and that really scares me.
I want a normal life, a recovered life but I’m not sure that it’s possible and that makes me feel a bit torn when it comes to recovery. Part of me wants to really give it a shot but the other part wants to give up and die and I can’t say which side is winning at the moment although it is probably the latter.
Three years ago my family and I packed our bags and moved from Northamptonshire to Wales. It was terrifying. I was dreading the move because it meant leaving everything that was familiar behind. Whilst my care had been rather rubbish back home, it was what I knew and leaving that scared me. Knowing I’d never see that receptionist’s face again upset me. I had my special place, the middle of a field where I’d often be the only person for miles and leaving that was hard. Everything was going to be new and whilst new can be exciting, it can also be stressful and lonely.
I remember trying to find the GP surgery for an emergency appointment, we walked up and down the same streets several times, walking complete circles of the block just to end up where we began and all alone time was ticking. We were going to be late, and being late sends my anxiety soaring.
I didn’t know anyone other than my mum and dad. I find it hard to put myself out there but I went to a local young people’s centre in the hope of finding friendship and I did but that doesn’t take away how utterly terrifying it was to walk into that centre for the first time. Definitely going to a local group or class helps when moving to a new area. It is so important not to become isolated as this often is not good for mental health. Volunteering is also another way to get to know people and the area you have moved too. Social media was so important to me in the first days, weeks and even months after my move. I was able to keep in touch with friends and family back home as well as emailing and phoning my old counsellor who’s support was pure gold dust. She probably didn’t realise just how much I needed her voice and reassurance then. Mind also run an online community called Elefriends and this could be a good way to connect to people and feel supported.
I have not always had supportive friends and family when it comes to my eating disorder. In fact there were years of pain where people didn’t understand or walked out of my life and I have never felt so lonely and isolated.
Nowadays I am extremely lucky to have the support I do. My parents visit the hospital everyday, my sister visits everytime she has a Saturday off work and I have several friends who visit often too. On top of this is the incredible online support, my twitter followers who send well wishes and the comments on my instagram that keep me going. I no longer feel alone in my battle and whilst hospital can be an isolating experience, I feel much less isolated than I used to.
I have lost many friends because of my illness, people who simply couldn’t cope backed out of my life and it really hurt. For years I kept my illness from my extended family and wouldn’t talk about it to my immediate family. This caused tension, loneliness, arguments, upset and total utter misery. Now I am much more open and I am both lucky and truly grateful for the support I receive from the people in my life.
Friends play a key role for sufferers of eating disorders, they are often the only part of ‘normality’ left in a sufferers life. Right now I am very unwell but I love nothing more than to have a gossip and a giggle with my friends. I don’t always want to talk about anorexia, sometimes it’s nice to take silly photos on Snapchat and to make plans for the future.
The role of the family is vital, particularly if they are the people the sufferer is living with. I know it is not easy for my family to deal with my eating disorder. I am well aware that they are heartbroken by how poorly I am at the moment and that before I came into hospital I was hard to live with. I was often in a bad mood with a short temper, particularly around meal times. I would eat separately to them most of the time and if they were in the kitchen when I was food prepping I would be very stressed out. They had to deal with a lot, especially coming home to empty cupboards during periods of binge eating. But I needed them. I needed them so much. Their love and support meant the world to me and without them I probably wouldn’t still be alive. We used to not talk about anorexia but now we are so very open with each other and it has brought us closer together. I have an incredible relationship with my family and I feel both lucky and thankful for this everyday. My friends and family both play an incredibly vital role in my life and my recovery.
Getting better terrifies me. I have struggled with eating since I was 5 but officially anorexia was diagnosed a decade ago. I’ve spent the past 6 years in and out of hospital. I’ve only lived in Wales for 3 years and I have spent nearly all of that time in one hospital or another.
I am the girl who brings her own food to people’s dinner parties. As my extended family tuck into an Indian takeaway, I shiver over a bowl of soya porridge. As my grandparents enjoy their Sunday roast, I nibble on raw peppers, carrots and cherry tomatoes. That is what has become expected of me. I don’t just have anorexia, I am anorexia.
Hospital has become my home. Everyone knows I’m in hospital and I am used to being here. I’m used to living in this little bubble away from the real world. I’ve forgotten what it’s like to go to the supermarket, or the cinema, or anywhere for that matter. I’m used to spending all my time with nurses and support workers instead of friends and family. I think nothing of having two people watching me whilst I go to the toilet or shower or sleep or do anything. This has become my life. Whilst other people my age go out on a Friday night, I lay in bed with a member of staff on each arm. This is the norm for me. This is my life.
I have become my mental illness. It has become my identity. People follow me on twitter and instagram because I’m ill and my whole accounts centre around my illness. My blog and it’s successes are because of my mental illness. My media work, my speeches…they have all been about my mental illness and that is what I have become known for, for being mentally ill.
So how am I supposed to get better? I don’t know who I am without all of this. I don’t even know if it’s possible to be without all of this. Will I ever wake up and be glad I’m alive? Will I ever tuck in to an Indian takeaway with my extended family and not want to kill myself with guilt afterwards? Will I ever go out with friends on a Friday night? Or have conversations that aren’t about illness or recovery? Who will I be if I get better and this is no longer who I am? I’m scared I’ll become a nobody but I’m even more scared that it isn’t possible. That I am a mental illness and I will always be a mental illness.
Being in hospital can be a very lonely and isolating experience. I know this myself having spent the past 18 months in hospital, I haven’t seen my grandparents, aunts and uncles, my goddaughter and most of my friends and most days I really, really miss them. I understand that seeing a loved one so poorly can be heartbreaking and many people don’t know if the person is even up for a visit.
This afternoon was lovely, I saw my ballet teacher, my friends and their four year old son and my parents and not only did it make the afternoon fly by but it brightened up my day. I feel like I am a part of the world around me, like I’m connected to society again and people haven’t forgotten about me.
My message is this: visitors are so important during long inpatient stays. I really miss a lot of people who were in my life 18 months ago and it means the world to see their faces even if it’s only for a few minutes.
So thank you to the people who have visited me and to those of you considering visiting a loved one in hospital, please do. It makes the world of difference.
I need you to know that I have a personality disorder, it is the diagnosis that I don’t speak about publicly and rarely talk about to anybody because I’m scared that telling you what I have will make you think I am a bad person. I desperately need you to understand what life with a personality disorder is like. It isn’t an excuse for the way I behave, it’s an explanation.
My personality disorder makes any kind of relationship difficult. No one seems to stay long in my life and I often find that I am ‘too much’ for people as I am vulnerable and dependent. I feel inadequate a lot of the time. I struggle to fit in and often my efforts lead to me embarrassing myself. I have powerful relationships and a lot of love to give but they are full of terror and fear. I fear abandonment and rejection so much that it normally leads to the relationship breaking down. Being close to me is a challenge and I find myself constantly asking for reassurance in relationships but in the end the mistrust and need for reassurance pushes the other person away. The slightest change in a relationship feels unbearable. I find it hard to believe peoples’ excuses for not seeing me and I take it as rejection. I often end up attacking those who are close to me ensuring the very abandonment I fear. I can’t control myself. I’m like a tornado destroying everything in my path. Personality disorders are destructive. Never think that I don’t care about others, my struggles with relationships make me think I should be alone forever and stay away from everybody. Self-hatred is always with me and the hurt I’ve caused plays on repeat. I’ve lost so many people because of my personality disorder and it’s agonising.
I struggle with my identity, I don’t really know who I am, and neither do I understand myself. Things can change dramatically one moment to the next. In two minutes I can go from being full of hope to completely hopeless. I can be motivated to change the world one minute and the next not have the motivation to wash myself. I am impulsive which leads to me spending money I don’t have and getting into a financial situation that I need help to get out of. I struggle with bursts of anger that take over me and often lead to me self-harming. I struggle with suicidal tendencies but no wonder death is appealing, my world is very confusing and painful. The mood swings, paranoia and delusions on top of the confusion and anxiety in relationships is exhausting. I’m terrified of the future, what if I’m always like this? Will I ever be able to have normal relationships and get married and have a family? Will that ever be a reality for me?
I can explain my personality disorder to you but I can’t make you understand it. I just hope that somehow this piece of writing helps you to understand how complicated life with a personality can be and I hope that the people in my life that read this can give me their time and patience to remain in my life.
I have had a lot of negative experiences when it comes to friendships and mental health. I have had friends not understand and walk away, I’ve been accused of attention seeking or being ‘retarded’. I have had friends fall out with me and never talk to me again because I needed a hospital admission. On one occasion a friend told me that they would not visit me in hospital because they felt this would encourage me. Often people have treated relapses or crises as ‘bad behaviour’ and my most unwell moments have often been my loneliest. I reached a point where I felt I did not deserve friends because I was mentally unwell-I felt like my company wasn’t fair on others and I totally isolated myself. I am now very lucky and incredibly grateful that I have one very good friend, her family really brighten up my day and keep me going and I no longer feel alone.
Here are my tips on how to support a friend who is suffering from mental illness:
- Do be aware that your friend may not want to talk about mental health constantly. Be there with listening ears if they do but from my experience the best way to help me to feel better is to talk about normal things or do something fun.
- Do make sure that you are coping, seeing someone you love unwell can be distressing. Make sure you have support and if things are becoming too much, tell your friend how you feel because your feelings matter too.
- Do make sure that you are not your friend’s only form of support, friends are important and fabulous but in the same way that it is unlikely you could perform open heart surgery on your friend, you cannot be your friend’s psychologist, GP, psychiatrist, dietitian and so on.
- Don’t expect to ‘fix’ your friend.
- Don’t make empty promises, only say what you are actually prepared to do.
- Don’t compare your friend to others with the same illness unless it is to inspire them. For example, don’t say “Oh my friend was so much iller than you” because it could make your friend feel like they are not ill enough to seek help and this could leave them isolated and alone.
- Don’t ask to see self harm or scars.
- If your friend is suffering from an eating disorder, do not mention numbers or force food on them. Encouragement is fine but be aware that too much pressure may cause more problems for your friend. Try not to talk about diets or exercise. Don’t comment on their appearance. People with eating disorders are often easily triggered.
- If your friend is unemployed, perhaps they have very few friends then they might not leave the house often. It can be helpful for your friend to go out for coffee and feel ‘normal’ for a couple of hours.
- Make sure you take time for yourself and that your mental health is okay. Take a bubble bath, drink hot chocolate. Look after you. You have to put your oxygen mask on before you can assist others.
- If your friend is school age then make sure they feel ‘normal’ at school. Make them feel part of the group and never use their illness against them. I remember one friend shouting out in the canteen that I self harmed after a fall out. I never forgot it.
- Be understanding that your friend may want time to their self. They might not have the energy to reply to your text or facebook message but it doesn’t mean that they don’t care about you. Having a mental illness can be exhausting. Allow your friend to rest.
- Never use the, “I’ve done so much for you” guilt-trip line in regards to supporting your friend with their mental illness. You might be temporarily angry or annoyed with your friend but this line really leaves a scar. I feel so undeserving of anything from friends and family because I feel they have to ‘put up’ with me. It’s not a nice way to feel.