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.
I found this video a little while ago, and really liked it. It is just a really honest response to what living with a chronic illness. It is Hank sharing his thoughts about his own experience. Take a look and see what you think.
Hello again to all my regular followers, and hi and welcome to the new followers who have popped up in the last few weeks.
A while ago it was suggested that I talk about my thoughts on how to cope with the day to day stuff that everyone with illness faces. How to get through work or study or whatever else you need to do, when struggling with illness. I thought this was a great idea, it is obviously something everyone with illness needs to do, and something which is very difficult to do. My second thought was that this was going to be really difficult to discuss. What a person with illness goes through on a daily basis can vary dramatically between and even within illnesses. What I need to do to get through the day may be completely different from what you need to do.
Although the specific challenges we face can be very different, ranging from managing ongoing pain, to having to take frequent toilet breaks, one thing we can all relate to is the disruption these things can cause in our lives.
I think a good way to try and manage daily life is to have a clear and realistic idea of what you can achieve in a day, and to then make a plan for each day based on this. It is worthwhile spending 10minutes each night planning what you need to get done the next day, and how you will go about this. Make sure you include the things you need for your health in your plan. This includes taking breaks, eating a healthy lunch, doing whatever exercise you are able to do, and scheduling doctors appointments. You need to see these things as equally important as your work or study commitments. Once you have a clear idea of your day, this will help you better manage things.
It's also important that you reward yourself if you manage to achieve what you set out to do in the day. Write down with your to do list what your reward will be.
If you find you're really struggling with things, make sure you talk to the relevant people. Your doctor might have some ideas on what would make it easier for you to manage your commitments. It's also important that you talk to your boss, teachers, or disability support services, so that they have some idea of what's going on.
What helps you manage the day to day stuff? What advice would you pass onto others?
Sorry for missing last weeks post. I had a bit of a hectic week.
Today I want to continue with the theme of mental health, but move on to a more serious topic. I want to talk about how serious mental illness can be, and how important it is that you talk about how you're feeling, and seek help when you need.
It is natural to feel down sometimes, or a bit anxious before something important. But when these feelings start interfering with your life, and you can think of little else, that is when it starts to creep into the category of mental illness. It is common to develop depression if you have another chronic illness, and for obvious reasons. It is completely overwhelming to be told that you will have this illness for a long time, potentially all your life. But it is important to understand that you don't need to feel hopeless when you have a chronic illness, there is a light at the end of the tunnel.
So sometimes a mental illness can be mild (although still horrible), but sometimes it can be very serious, even life threatening. So if you are feeling hopeless, and thinking you have nothing to live for, or you feel life hurting yourself in anyway, you need to make someone listen. Talk to your family, your friends, your GP, make sure you get some help. Refuse to be ignored, because you are important, you deserve help, and your life is worth living. Don't ever forget it.
Remember that if you are feeling suicidal or life self-harming, you do not need to act on these feelings. It takes a lot of bravery, but you can ignore them. Say to yourself that you will do something you enjoy, put your feelings of until the next day, and then reflect on your thoughts. You may find that the feeling become less intense if you can put them off for a short time.
I'm not a doctor, or a counsellor. i cannot tell you how to cope with these feelings, or offer a magic pill. I can offer things that have helped me. I can tell you that seeking help is absolutely worth it, even if it is hard, or feels impossible. You are brave. You can get through this.
If anything you have read today has been difficult or triggering for you, you can ring lifeline on 0800 543 354. If it is a medical emergency, call 111.
What would you say to a friend if they were feeling hopeless? this is advice you should give yourself too
Don't forget about the give a little campaign.
Last week I had my sixth surgery for the removal of endometriosis and adhesions. It is easy to feel frustrated when you're going through the same thing over and over again for little benefit. You go through the process of recovering from surgery, only to find your health is no better than before the operation.
So I have been thinking a lot about the idea of hope in relation to mental health. What is the value of hope? How do you find hope? How do you hold onto hope when things aren't going your way?
I think hope is essential for learning to cope and manage illness, and for maintaining a positive outlook. You hope to get better, or to find the strength to get through, or to be able to achieve your goals despite illness. If you lose this hope then it starts to be hard to see the point in continuing to work on your health. So hope is an incredibly valuable tool.
Finding hope is never easy, but it is worth it. Think about the things you enjoy or are passionate about; how can they give you hope? Look to the people you love to give you hope if you can't find it yourself. Find stories of people with your illness who are still living a life they love. Positive stories are an infinite source of hope.
Hanging onto hope when things go wrong is not an easy skill to learn. It is easy to feel frustrated and hopeless. I think that ensuring you don't feel defined by your illness is a great way to maintain hope. Think about all the parts of your identity that co-exist with your illness. All the things that still matter, that you still love, regardless of your illness. There is more to you than just this illness, and if that isn't reason to hope, then I don't know what is.
What do you feel hopeful about? How does hope help your mental wellbeing?
Don't forget about the give a little campaign xo http://www.givealittle.co.nz//cause/beautiful_identities
May is international mental health awareness month. So this month I'm going to talk about mental health and mental illness. Whether or not you've been diagnosed with a mental illness, everyone has times where they struggle with their mental health, and everyone needs to maintain a strong sense of mental wellbeing in order to be healthy.
When you are facing an illness it can drain significantly on your mental health. You can find yourself feeling stressed, frustrated, angry or hopeless. This is perfectly normal, but it also makes it hard to manage your illness.
I'm going to share a few simple tips that I use to manage my mental wellbeing, and hopefully some of them will be helpful for you:
How do you manage your mental health? What do you wish other people understood about mental health and mental illness?
Don't forget about the Give a little campaign...your help can make a huge difference
I read a blog post once (can't remember where) that talked about the benefits of volunteering. That's what I want to talk about today. Sometimes the best thing you can do when you're struggling emotionally or looking for a different perspective is to focus outward and do something to help others. Help a friend in need, or get out and volunteer.
Obviously if you're experiencing a real flare-up of your illness, that is not a good time to be volunteering. But if your illness is pretty much the same as always volunteering could be really beneficial for you. You don't need to donate a huge amount of time, just an hour a week or month is enough for you to contribute something to organisations that could not function otherwise. The great thing about volunteering is that there are so many different options, there really is something for everyone. If you are a bit shy, but love animals, then you could try the SPCA. If you love working with kids, there are a heap of options. If you would rather do something behind the scenes, then you could work in a kitchen, or make things to send to developing countries.
Volunteering can give you a new perspective and a different focus.
Have you ever done any volunteering? What could you do?
Don't forget about the give a little campaign. http://www.givealittle.co.nz//cause/beautiful_identities Every dollar counts
Today I want to talk about the cycle of different forms of chronic illness. This is where a negative reaction to a symptom causes you to behave in a way which actually increases these symptoms. For example, if you have severe pain, fatigue, or depression, then you are unlikely to engage in much physical activity, due to fear of worsening symptoms, or lack of motivation. However, being completely inactive can cause poor sleep, and guilt and hopelessness, in turn worsening depression, fatigue or pain. There are many examples of these cycles for a variety of different illnesses. Try searching on google images if you are interested in finding out more. Try something such as "the cycle of anxiety" or "the downward spiral of depression". This is interesting information, but does make it seem a bit hopeless if everything you do to cope with your symptoms actually makes them worse.
This is where healthy coping mechanisms, such as gentle exercise (prescribed by a physiotherapist or doctor if necessary), healthy eating, and stress reduction can help to reverse these cycles, and make it easier to manage symptoms. With these healthy behaviours, sleep will improve, and so will symptoms. Knowing about these cycles is helpful because it makes it easier to understand what can be done to prevent the continuous cycle of pain etc relating to your illness.
What can you do to reduce the cycle of your illness/symptoms?
P.S Don't forget about the Give A Little Campaign I have going, to develop further resources for people with ongoing illness. http://www.givealittle.co.nz//cause/beautiful_identities Thanks so much for your support.
Sorry for the lateness of my post this week. I had graduation yesterday, so was away from the computer. It is an exciting time :)
It is also an exciting time for Beautiful Identities. Today I am launching a Give A Little campaign aimed at raising funds to develop the next stages of the Beautiful Identities website. Once this is up and running, Beautiful Identities will look at expanding its services into the real world, rather than just the virtual one. I am so grateful for the support all of you have offered Beautiful Identities. How you can support the new project is either by donating, every dollar counts, or by sharing the campaign with your friends and family. The more people who know about it the better.
So that is what I'm excited about today. What can you be excited about?