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Xander

Talk on long term illness and labelling

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I am thinking about giving a short talk to people with long term illnesses and how we all use labels.

I don't want to offend anyone at the talk but probably will, but have any of you lovely people got any tips or stories which could help me try and open a few minds, I have learnt lots from Kain but I have lots of friends with long term illnesses including myself and since I have taken this label away, it has felt like a weight has lifted from my shoulders. And would like to pass this on.

 

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Hi Xander,

Not a long term illness as such, my wife suffers with chronic pain and has done for nearly 30 years after a serious car accident. Her ‘label’ if you like is that she’s the person who “never gives up” which can be very empowering for her but can also cause her to push herself to far and cause more pain!

We need to be careful with labels and removing them as they can be a service as well as a hinder to people.

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Hi Xander,

What a great thing to do. I'm sure you'll approach it with compassion since you have such experience. Is it about asking the question, 'what do you want to identify with' or 'how do you want people to identify you'? So we can choose to be the person 'who has suffered for years with x' or maybe we prefer to be the person, 'who has achieved Y and is awesome for doing that'. I think if we're genuinely offered the choice, it is our fulfilled ambitions that we'd like to identify with rather than labels that fix us in one place.

Maybe you could video your talk and post it to the videos in Achology?

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Long-term illness by my experience causes people to label themselves by what the most of the feedback from their social circle causes them to start labeling themselves in the first place and in long term that is one of the difficult things to overcome as a lot of the people have accepted this as the truth of what they are so, therefore, it is almost as if they were raised to this. But it is also rewarding when you achieve a breakthrough with someone like this as this can make them free again and give them the push and motivation to move forward. It is on us to show them that labels are only labels and as such, they can be changed as we see fit and in most cases usually other people start labelling people so that they can point a finger and judge.  Usually without any proper information or knowledge about that person! 

 

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Hi Xander, and well done on removing your labels.

You will always have people that get upset or disagree.

But you may get 2 or 3 (or many more) that buy into your methods.

These will have won some glory and thank you.

The others, well they stay in the same place trapped😆

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Hi Xander, this is a very interesting subject and close to my heart as a recently recovered long term ill person with many labels! Personally I hated telling anyone that I was ill and would often say that I was a stay at home mum! I found it quite embarrassing that I hadn’t forged the amazing career that I’d hoped to have. When people got to know me better then I’d end up having to own up to my labels but more in a way for them to have an easier understanding of the issues I had. The other  thing I found to be difficult was that I had unusual illnesses, m.e and fibromyalgia, where I looked well but barely had any life at all and ultimately gained personal hang ups as most people just thought I was lazy! Ha, if only! I was further diagnosed with rheumatoid arthritis and most people knew a bit about this Illness, and I got a whole load of sympathy and help, it was really quite refreshing to have this label, people understood what I was going through as soon as I told them which can be extremely helpful. Now,  I’m happy to have the label of someone who has recovered and is building a life, but what I see now, is that many ill people are choosing to stay ill rather than even ask me how I’ve recovered, even when I offer them the help, they’re simply not interested, it’s not what I expected at all?! I guess we all have our own time when we’re ready to move on.x

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On 7/11/2018 at 6:56 AM, Graham Nicholls said:

...my wife suffers with chronic pain and has done for nearly 30 years after a serious car accident. Her ‘label’ if you like is that she’s the person who “never gives up” which can be very empowering for her but can also cause her to push herself to far and cause more pain...

I can completely relate to this. I have been dealing with chronic pain due to spinal surgeries and other related physical health issues for most of the last decade, and also tend to push myself too far sometimes. I'm still learning my physical limits and how to honor the boundaries of my abilities as time goes on. It cost me my business, but it has never beat me down. I keep getting up and moving forward at any pace I can rather than allowing a label or diagnosis to hold me prisoner. I've got too much I want to do in this lifetime to sit it out on the sidelines.

I have known friends whose illness or chronic pain became their identity. It is who they thought they were. "I am a 'name the condition' sufferer. I cannot do 'this' anymore, or 'that' anymore, so what's the point of trying?"  While chronic pain and illness certainly can change what it is you may physically be able to do in some cases, I do not believe that it then defines who you are nor does it take away all possibilities of what you CAN do.  As a result, this is what I would like my niche to be when I am in a position to establish a practice - helping clients that may be struggling with the limiting beliefs that chronic pain and long-term illness bring about within them.

What I would suggest, Xander, is kind and compassionate honesty. Yes, you will likely offend some people. They will be those that have established their condition as their identity and are not ready to hear anything different. That's ok. It's just where they are at right now. But it is also quite likely that you will make a profound impact on those that ARE ready to hear your message. Give the talk, and know that for those your talk does make a difference to, you may very well have changed their lives in a permanently positive way. How awesome would that be?  :classic_smile:

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Great idea, I'll do a video and everyone can let me know if its ok before I go ahead.

I completely agree with you all, I have a condition called Ankylosing Spondylitis and when I was diagnosed I seemed to label myself with this condition and after time it seemed to take over. But I don't think it was the illness that was causing a problem, it was more my frame of mind. I was depending on pain medication and this made my life very restricted and I feel this caused more pain. I would still always tell anyone to talk to a doctor first when it comes to any illness, but with my first hand experience I have taken the label away and now free from medication and living the same life I had before I was diagnosed. I still have a condition but I see myself as a person first which I didn't before.

Thank you guys for your messages and advise. I hope to hear more from you in the future

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8 hours ago, Xander said:

Great idea, I'll do a video and everyone can let me know if its ok before I go ahead.

I completely agree with you all, I have a condition called Ankylosing Spondylitis and when I was diagnosed I seemed to label myself with this condition and after time it seemed to take over. But I don't think it was the illness that was causing a problem, it was more my frame of mind. I was depending on pain medication and this made my life very restricted and I feel this caused more pain. I would still always tell anyone to talk to a doctor first when it comes to any illness, but with my first hand experience I have taken the label away and now free from medication and living the same life I had before I was diagnosed. I still have a condition but I see myself as a person first which I didn't before.

Thank you guys for your messages and advise. I hope to hear more from you in the future

I know what you mean... I did the same mine at first...... then when your shock of learning about it wears off.. it is like people have this mob mentality of "What it is like to have this illness" ... "I am like no really... ya don't wanna know". And just try to get them to stop introducing me as This is so and so and they have this illness.. or this is illness Girl, Illness boy, I see that a lot too... I saw that a lot with my friend that had Cancer people always said so and so with Cancer, or Cancer boy or Cancer girl... as if the illness itself is not scary enough... All I can say is try to explain to people you do not want to focus on your illness all the time, or talk about it all the time.. it is hurting more than helping....  But I found people like to bait people into these talks too to either prey on them, or make people out to be weak... or feel worse.. I see this is a lot on the chat network I go to...  

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