This is a video by a youtuber who suffers from depression and trichotillomania, a compulsive hair pulling condition. In this video she captures some of the hurtful responses she has received regarding her condition. These responses do nothing to help someone experiencing a health condition, and can make them feel worse.
Have you had times where people have said hurtful things about your illness? Do you think it is hard for others to understand what you are going through?
This is a defense of The Fault in our Stars by a young person who has herself experienced cancer. Some people have opposed the idea of a love story with cancer sufferers central to it. This story defends it, saying that those with cancer have as much right to love and be loved as any other young person.
I know most of the people reading this blog won't have cancer. But I think this is a really important idea for anyone with illness and disability. It also relates well to the central idea of beautiful identities, that you are so much more than just your illness. Everyone is a capable of loving and being loved. I am not only talking about romantic love, I'm talking about love in all its forms. So remind yourself of this fact.
Do you think other people see your disability as a barrier to love? Do you see it like this? How can you remind yourself that you are capable of loving and being loved?
By the way, The Fault in our Stars by John Green is a fantastic book. I mean don't get me wrong, it is sad. There's no other way to put it. But it is also beautiful and hopeful.
This talk tells a story that is very sad. Ramona went through absolute hell on her road to recovery. But she is testament to the incredible strength people can show in the face of adversity. I think this talk demonstrates the importance of having a supportive team of people around you, to help you face the challenges associated with illness and/or disability. I think it would be impossible to cope without support, whether this comes from family, friends, support groups, or all of these. A recent blog on To Write Love On Her Arms discussed the idea that people need other people, and I think this talk exemplifies this idea.
Who do you have in your support team? How can you show that you appreciate their support?
When you experience a life-changing illness, you keep holding out for that wonderful thing called recovery. But if recovery means being cured, then many people will never recover from their illness. So how do you define recovery? What does it mean to have recovered from your illness? What does it mean to be in the process of recovery?
If absence of symptoms is unrealistic, perhaps people need to be looking at how they are managing their symptoms as an indication of recovery. If you are managing to go about your daily activities, then this is a sign that you are recovering. If not, then that is something you should be working towards with your doctors. I think your quality of life is the most important indicator of recovery, much more so than absence or presence of symptoms. If you are enjoying life, and managing your symptoms well, that is very much a sign of recovery. If you aren't, then you need to keep working towards this. How can you change your activities so that your quality of life improves.
At Beautiful Identities, I talk often about the importance of not being defined by your illness, but it is also important not to be defined by your recovery. Don't let the things you need to do to manage your symptoms define you. Your altered diet, accommodations at work or school, or your medications should not define you any more than your illness should. For example, if exercise is important in maintaining your wellbeing, you don't want to be feeling like this is the only reason to exercise, you should be finding a type of exercise that you enjoy, so that this can be a part of your identity separate from illness or recovery.
How do you define recovery? How do you avoid being defined by your tools for recovery?
Today I'm going to share with you a talk which I thought was really cool. It showed a real understanding of how disability can affect someone's life, but also how it does not need to define one's life. Maysoon says she's not an "inspiration", perhaps by that she means that she doesn't use cliches and make every sentence deep and meaningful, but she is certainly inspirational in the way she has overcome barriers to achieve her goals.
What are your thoughts on this video?
I have two things to share with you today. The first is this article I discovered on facebook. http://www.viralnova.com/kyle-thompson-photography/ I think it is really cool how Kyle has managed to use his creativity to help him overcome some of his anxiety. He put his experience of illness into his work, and created something incredible out of it, which received an overwhelmingly positive response from the public.
The second thing I would like to share is this picture:
For one thing, this is incredibly cute. It also perfectly exemplifies what Beautiful Identities is about and brings up some really important ideas. You are so much more than your illness, you have an identity outside of your illness. You are not to blame. These are really important things to remember. If someone treats you badly as a consequence of stigma around some illnesses, remember that this is their problem, not yours. (Also, I know it's a bit late for halloween, but today seemed like a good day to share)
I'm going away to do some voluntary work overseas for four weeks, so I won't be posting for a while. I won't be able to check my emails, but you can still contact me via the contact form or firstname.lastname@example.org and I will respond once I'm back home.
I recently read an interesting quote, which got me thinking about identity in a slightly different way.
Life isn't about finding yourself. Life is about creating yourself.
I thought this was interesting because I had always described work I do on my identity as a way of finding myself, but I think that creating myself is a much more accurate description.
Some events in your life are pre-determined, you have no control over them. But you have the freedom to create the identity you want. There will be parts in your identity that are beyond your control, such as your illness, but you can decide how you perceive these, and what other parts of your identity you include to balance out the negatives.
Think about your identity like a piece of art, of which you are the artist. You have control over how the artwork turns out, what is included, what is excluded, and how these things interact.
What does this quote mean to you? Do you treat your identity like a piece of art?
This is a really inspiring talk about overcoming obstacles, and reinventing yourself in the face of challenges. I found that I could really relate to this, and hopefully you can too. When I became unwell, I had to give up many of the things that had previously defined me. This was a real challenge, and I struggled to work out who I was in the face of this. Like Janine, I had to change many of my dreams and life goals.
This talk has a couple messages that I think are really important.
These are both really important things to think about.
What dreams have you had to give up? What new dreams and goals could you create? Do you sometimes feel defined by your body?
I hope this gives you some inspiration for your Monday morning.
P.S The link to the survey is below.
This is a really inspiring talk, well worth watching. If you choose to watch it, think about this:
How do you want your story to go? How can you get creative and challenge your limitations?
Yesterday I went out with some friends for dinner and dessert. Amazing dessert! I've been really focussing on eating healthy, but I thought I would treat myself. I've been working really hard, and have been really busy. I think when you have been working hard and have achieved something, it is important to reward yourself. Make the most of your achievement and take the opportunity to do something you really enjoy.
It had been a long time since I had seen my friends, so it was really fantastic to see them again and just have an enjoyable night, where all stress was put to the side. I was worried about going because I was so tired, but once I got there my fatigue disappeared for the night. Seeing my friends and indulging in some fantastic food was an amazing reward for the work I have been doing.
So this week I encourage you to recognise your achievements, and reward yourself for them by doing something you enjoy, but don't get to do all that often.
What can you reward yourself for? How do you like to reward yourself?