I received such a fantastic response to the post I wrote about accepting your lot in life. Thank you to everyone who took the time to read, share and comment on it. I had lots of people say the post resonated with them, even to the point of thinking about their own happiness. Thank you.
I've still been thinking of happiness and acceptance, and the feeling of being apologetic for happiness if you've got something 'wrong' with you. It's a shame we have to apologise for happiness.
I've also been thinking about how I (and others) have come to be happy and accept my (and their) illness or disability. I've been thinking about positive body image and believe it's so more than the arguments of shape and size perpetuated by the media.
I watched a video by Paralympian Jessica Smith, who was born without her left forearm, and struggled with depression and an eating disorder and acceptance of her body for a long time. Jessica has found happiness and self acceptance now, and is working to promote the attitude of happiness as choice. People left comments in the article about Jessica, asking "but how do I love my body?". Jessica provided an honest response which you can read for yourself. But for now, here is some of the advice I have about loving your body and accepting your illness. I think this post is one of the most personal I've written, so here goes.
(Please consider that this advice is based on my own experiences, and I am not a counselor or medical professional. If you need further advice, visit a mental health or medical professional.)
Tell yourself you're worth it.
You're beautiful, you're smart, you're funny, and you are fighting a big battle. You're as good as any supermodel, any leader of the in crowd, any 'normal' person. You are worth it.
Sometimes I stand in front of the mirror, in my bra and undies, and tell myself I look hot. I admire my wrinkle free skin and curves in the right places. I feel good about my stomach and boobs. And then I get dressed, feeling fabulous.
Get to know your illness or disability.
Learn about the medical and emotional aspects of it. Talk with your doctor, ask them questions if you don't understand something. If you need emotional support, ask your doctor whether they can put you in contact with a mental health professional.
Talk about it to your family and friends and colleagues. It's not something to be ashamed of. And I think talking about things makes others more comfortable.
Laugh about it. There are funny sides to everything. At Christmas last year, we had a feast of turkey and duck and vegies and desserts. My Dad asked me "how's your skin?" and I said "yeah a bit sore, but it's improving now I am a bit more rested". He laughed at me, and then I realised he referred to the duck skin! And I realised my illness is such a part of me, that skin is so often a topic of conversation! We had a big laugh!
But don't become too bogged down in questioning your illness or disability. I believe things just are. It's no one's fault. Don't place blame.
Hang out with positive people - those that don't bring you down.
The reality of having a chronic illness and a visible disability is that people stare, tease and exclude. It is hard to find a place where you belong at school, but finding where you belong will make you happier.
I know that this is not easy when you are at school. I haven't always been this happy, particularly at school. I was excluded from many activities because kids thought they'd catch my condition and they didn't want to hang out with someone so unpopular as me. I have been teased, spat on, stabbed with a protractor, called names and excluded. That was the worst thing - the exclusion. I spent a lot of time in the school library alone. I absorbed myself in books and music, and these characters became my friends. I didn't like being lonely. I didn't like people not wanting to hang out with my on the weekends. I didn't like only having teachers visiting me in hospital. I remember telling my parents that I wish I was in hospital more, because I had friends in there that understood about being sick and being different. Even if the pain of having staph and wet bandages and needles was so hard to bear, I'd rather have been in hospital than at school.
I eventually made friends - with other kids in hospital, and with the people outside of the in-crowd at school.
Know that it will get better once school is over. I made friends instantly when I started work in a department store aged 17. I wished I had started working earlier. The friends I made there are friends for life. And on my first day at uni was nothing like the school yard.
And all that time alone has made me very comfortable doing stuff alone as an adult. Seeing bands, eating out, going to movies. I'm fine doing it alone.
To round off this piece of advice, I'll share a story that I am very proud of (but probably shouldn't be). It was like a verbal slap. I spent a lot of my time at highschool hanging out with people who made me feel bad about myself. Maybe it was because they felt bad about themselves. And maybe I just wanted someone to make me feel a part of a crowd. So on the second last day on my year 12 exams, I was in the common room, talking to this girl who I hung out with. She was possibly more unpopular than me. I was telling her about this boy that I had formed an online relationship with, and the previous night he had called me for the first time. She asked me if he has said "I loved you" yet. Yes, he had. And then she asked if he had seen what I look like. He had - I had scanned in my school photo and sent it to him by email. She then said "how will he ever love you when he knows what you look like?". I was gobsmacked. I said to her "you will never be beautiful because you are too fucking ugly on the inside". This was about half an hour before our history exam - her last exam. She took what I said, and cried. Loudly. I don't know how she did in her exam. I never spoke to her again that year, though she sent me an 18th birthday present to make up for what she had said. Then on my first day at uni, she came to talk to my new friends and I. I was civil. I wasn't scared, because I had new friends on my side, who accepted me for me.
Talk to people about your feelings.
Talk to your parents. Your siblings. A counselor. A blog. Write for the world to see. Lifeline or Kids Helpline. You are not alone.
When I was nine, I told my parents that I wanted to commit suicide. I don't know if I knew the impacts of suicide, or what it really meant. All I knew is that I didn't want to be here if I wasn't accepted, if I didn't have friends. My parents sent me to a psychologist. I have a good memory, but I don't remember any of those sessions. Maybe the brain is programmed to shut off things that are too painful to remember. I guess they helped me, because I've never had those feelings again.
Avoid things that make you feel bad about yourself. Do stuff that makes you feel good.
I stopped reading the magazines that told me how to give my boyfriend the best blowjob he's ever had and that told me how to diet to fit into that size 6 dress. I didn't want the media telling me I'm inadequate.
I've also avoided most support groups for my illness. Because I find they bring me down. It becomes a competition of who has it the worst, who is the sickest, and who can handle it the best. Illness and disability is not a competition. Pain is relative. Your battle should be with your own body, not fighting someone else's.
I do stuff that I enjoy because it makes me feel happy, and it's enabled me to meet friends. I dress up, go out, do everything that I want. I'm not going to let how I look stop me.
Help others with illnesses or disabilities.
Getting involved in mentoring young people with chronic illnesses was one of the best things I've done. It was challenging and rewarding, and I learned so much. I learned what I can offer is valuable, and that I gained just as much from the support these young people gave me.
You don't have to help others with your exact illness. I think you really notice that you have so much in common with the chronic illness disability community even when your symptoms vary so greatly. And it's a great way of meeting people.
Volunteer to speak on a radio or TV show about yourself. Write. Volunteer at an organisation that's making a difference in the community. You won't regret it!
And now for some other perspectives. A few young people with chronic illnesses have given me permission to publish their responses to this question: