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It's Okay

10/30/2014

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Today I just want to send everyone a little reminder. It's okay if you can't live up to society's ideas of what someone your age should be doing, or how you should look.

It's okay if you're struggling.
It's okay if you need to ask for help.
It's okay if you fail at something.
It's okay if you congratulate yourself for simple things like getting out of bed or having  a shower.
It's okay if others don't understand why you're congratulating yourself.
It's okay if you slip up or relapse.
It's okay to be angry about your illness.

It's not okay to punish yourself for these things. You are doing better than you think. Just remember, when you're in too much pain, too tired, that you are so much more than just your illness.






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Helping others Help You

10/13/2014

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Sorry I haven't posted in a few weeks, I've been really busy! I know that's a pretty crappy excuse, but there you go.


I've talked a lot about some of the unhelpful and insensitive things people can often say to you when you're unwell, but today I want to talk about something slightly different. There are people who really care about you, want to help, and try to understand, but it's still frustrating trying to get them on the same page when they aren't experiencing the same things as you. What can you do about this?


The first thing I want to say is communication. If someone doesn't understand something, explain it. Explain to them, in as much detail as your comfortable, why you can't do a certain activity, or why stopping all your medication and going vegan or starting yoga won't magically cure you. People can only understand if they have all the information. Another important thing is to speak up if someone unconsciously says something you find offensive, tell them why it's offensive to you, and why your disability has such a large impact on your life.


When people ask, what can I do to help, the natural instinct is sometimes to feel frustrated, to tell them there's nothing they can do, and that you will never get better. While it is true that you may not get better, try not to assume there is nothing others can do to help. Think about some of the things that help you when you have a flare up, such as a heat pack or gastrolyte, and let people know about these. The Pillow Fort UK has a great resource for helping others know how to help based on which symptoms are playing up. You can find that here along with the blog detailing a bit of background information. If you live with others, such as your family or flatmates, this can be a great way to tell them what will help you in advance so that you don't have to try and figure it out while you're in pain and grumpy. (you do have to subscribe to get the printable, but there is an example there, so you could easily make your own).

How can others help you when you're flaring? How do you explain your illness to others? Does this work, or do you still feel like the don't "get it"?

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Self-care and Identity

9/22/2014

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I've been thinking about the ways that parts of your identity can link in with your self-care routines, for when you're unwell, distressed or exhausted. Obviously some parts of self-care are pretty fundamental, and can't link in with identity, you just do them because you need to. For example, drinking plenty of water or Gatorade isn't going to be part of your identity, you just do it, because dehydration is not going to be helpful.

But I think some parts of self-care can be related to identity. If you have the energy to do something active that's great, but even when you have to be more passive, there are still ways you can keep your passions alive. For example, if you like a creative activity, or if you love reading you can do that. Read something that really matters to you, rather than just whatever you can find. If you need to be careful what you eat, and you love cooking, look for some recipes that suit your diet. Even if all you can do is watch TV, try to find something you are interested in, rather than just whatever is on.

Your identity encompasses all of the things that are important to you, so self-care will be a lot easier and more effective if you keep these things in mind, even when things are really bad. Even if you are in hospital, you're not going to sleep all the time. So bring something that can keep you distracted.

How do you think identity and self-care are interconnected? What is important for you when you practice self-care?







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Ableism

9/8/2014

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This article discusses ableism, or the way in which people with disabilities are discriminated against. It's an interesting read, and something I thought some of you may be interested in.

I want everyone to think about ways in which we can counteract this discriminatory ideas, and how we can challenge the traditional notion of a disabled person. Not everyone with an illness or disability fits perfectly into the mould, and this can make it hard to avoid accusations of being lazy or a faker.

In one of my sociology lectures, we discussed the idea that you don't see privilege when you are in it. If you are wealthy, you don't see poverty, if you are white, you don't see racism. So for those of us with a disability, it is pretty easy to see discrimination. Less so for others. But it doesn't have to be this way. We can challenge ourselves to see things that don't affect us directly, we can challenge others to see the things that do affect us, but maybe not them. We can encourage others to see ableism, and to try and do something about it. We can share articles like the one above, and challenge the way people thin

Have you ever felt discriminated against because of your illness? What do you think we can do about this?

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Spoon Theory

8/25/2014

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This is the link to an article about "Spoon Theory", a theory someone came up with to explain what it is like to live with a chronic illness, and how it affects everything you do.

It is an interesting way of thinking about illness, and is worth a read, regardless of whether you end up agreeing or disagreeing with it.

What are your thoughts on the spoon theory? what other ways could you explain how it feels to live with illness?

I'm keen to get people's thoughts on this, so feel free to comment below!







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Hiding Signs of Disability

8/18/2014

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I've talked a lot about "invisible illness" on this blog. But often, even with illnesses that are considered invisible, there are some physical signs of illness or disability, and people often go to great lengths to hide these.

This link shows pictures of people who suffer from inflammatory bowel disease, and require a colostomy bag, showing off their colostomy bag, rather than hiding it away.

I think this is really cool, because it shows that people do not need to be ashamed of physical signs of disability, and challenges societal ideas about what a "normal" body is.

What are your thoughts?







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Happy Esther Day

8/3/2014

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Today (August 3rd) is a day known as Esther Day. Esther Earl was a girl who died in 2010, at the age of 16, from thyroid cancer. She was involved in running a nerdfighters (fans of the vlogbrothers video channel) fan site, and she met the author John Green through this. Before she died, John came to her, saying that he wanted to start a holiday on her birthday, August 3rd, and asking her what she wanted this holiday to be about.

Esther said that she wanted the holiday to be about love. Not romantic love, lord knows there are plenty of holidays to celebrate that. No, she wanted it to be about all the other types of love. The love that you feel for your family, and for your friends. Esther thought that it was incredibly important that you tell these people what they mean to you, rather than leaving it unsaid. What an amazing way to have people remember you!

So today, and every August 3rd, I want you to tell people what they mean to you. Particularly the people that you love, but find it hard to say "I love you" to.

When you face a chronic illness, you do tend to rely on people for things that others don't. Sometimes you jus need help with things. Trust me, people would not get up to take you to hospital at three in the morning, or help you get out of the bath, if they didn't love you. So make sure they know you love them back.

Below are some links about Esther Day:

This is John Green talking about Esther Day.
https://www.youtube.com/watch?v=ixr4YISTmck


This is Esther responding to John's video.
https://www.youtube.com/watch?v=PXURnZ92cGM&list=UUdZb9xjim9qjnIwAuQpvWJA


This is the Harry Potter Alliance's page about Esther Day (She was a huge supporter of their work).
http://thehpalliance.org/esther-day/


This is the organisation Esther's parents, Lori and Wayne, started in her memory.
http://tswgo.org/






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Chronic Pain

7/28/2014

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This is a video from a chronic pain specialist. I know that not everyone who follows Beautiful Identities will have a chronic pain condition, but I think that he message can be applied to many conditions.


One thing I like about this video is that it explains chronic pain in understandable terms, without making it seem less significant than it is. It does slightly oversimplify the treatment process, not everyone recovers within months, even with a multi-disciplinary pain approach.


I think it is a great video though, because it shows that there is hope for the future in chronic pain treatment. I think this is something that anyone with chronic illness should remember. Even if there is not a current cure, or even effective management, the medical field is constantly changing and evolving, so during your lifetime, there will be new things to try, and hopefully something that will work for you.

Don't forget that things as they are now, are not as they will always be.





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Crazy Times

7/22/2014

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Sorry for missing yesterdays post. I have had a bit of a busy time this week and last week. I found out last week that I was accepted into a postgraduate programme in Auckland, which started this week. So, although I'm very excited, it's been a bit overwhelming trying to sort everything out in such a short space of time. Sometimes life is just overwhelming, this isn't a symptom of illness, or a sign that things are deeply wrong, it's just life.


What do you do when you feel overwhelmed?


Also if you are interested in reading a bit more about living with chronic illness, from a variety of perspectives, the below link has a range of people's stories. Some of them have found ways of dealing with their illness, and maintaining a positive attitude, while others are at a stage where the illness is completely overwhelming them. I think everyone can remember being at that stage, even if they aren't currently.


Can you relate to these stories? What are your thoughts on them?

http://www.stuff.co.nz/stuff-nation/assignments/living-with-an-invisible-illness








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Stigma

7/14/2014

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This is a Ted Talk about stigma surrounding mental illness. I think it can also be applied to certain physical chronic illnesses. Stigma stems from a lack of understanding, and can be responsible for insensitive and hurtful responses such as those seen in last weeks video. The end of the talk highlights ideas central to Beautiful Identities, that this is just an illness, and not your whole life.


Do you ever get responses like these; "everyone has bad days", "my cousin had that and she's fine", "you just need to think positive"? How do they make you feel? What to you think ordinary people experiencing illness can do to help reduce stigma and discrimination?





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