Over the years with these diseases I have been called many things by many different people. I have been called ‘complex’ by specialists, a patient, a fighter, a sufferer, unemployed, a burden, an ‘attention seeker’, wonderful, kind, caring, lazy… and the list goes on. But the one thing that I find the hardest to handle is when people (well meaning people) call me inspirational.
I find it hard because I have never seen myself as this and I doubt I ever will. I only see myself as normal, a human being and like everyone else on the planet. I am doing the best I can with what I have and what I know. Believe me, there are days when I look, feel and behave far from inspirational! I don’t have the the worst diseases in the world but I don’t have the easiest ones either. There are plenty of people who suffer, fight, struggle, battle and strive every bit as much as me and I am just as in awe of them as anyone else is. I have never once thought of myself as anything special, other than the fact I have a kind partner and wonderful fur kids. Anything else is just… well… a bonus. I guess the one thing that I will claim for myself is that I have an inquiring mind and I try to find lessons in the things that have happened to me and to others. Sometimes I see it is like something that was hardwired into my nature. Some people have called me resourceful, resilient or and other words, I like to call it ‘the will to learn’.
Being called inspirational makes me think of fortune cookies, bumper stickers, people wearing robes and living monastic lives on top of hills. I am anything but those. I had no choice in some of the things life has handed me and I had a lot of choice in some of the things that have happened, the result is a mixture of two; just like you. I don’t pretend to more or less but I do have a keen allergy to people who claim to know more than they do and those you close their minds and their opportunities to learn due to choice and selfishness. To those people, I am glad to say, I can easily do without. I think the ability to learn and grow transcends any situation or health challenge and Professor Hawking is an example that springs to mind. Yet the opposite is also true, some of the emptiest spirits and vacuous souls reside in healthy bodies and make the most ‘noise’. Learning the difference between the two is often the result of experience and observation. Anyway, back to my point. Those who actually know me, know that I can be a lot of different things, but I am not sure that I deserve the title of being Inspirational because I am haven’t brokered world peace, cured cancer (or autoimmune diseases) and I have solved world hunger. But I hope I will always be able to learn and that I hope I always will.
So why do I write these blogs and tidbits? Well. I don’t write them for the fame. I don’t write them for the glory. I don’t write them to make people think I am any better than them or have the answer to everything tucked inside a bag somewhere. I write for these reasons and these reasons alone. A. If you are healthy and have taken the time to read my blog and the blog of so many others survivors who are trying to deal with autoimmune life, I want to thank you from the bottom of my heart and reward you with the information and a glimpse at some of the realities for people like me. B. I want to advocate for chronic illnesses, autoimmune, wheelchair bound, disabled, forever struggling people like me (over 80 million of us in the US alone). C. I encourage people to examine the way you may perceive some of these life long illnesses and what you understand about those living with them and D. If you already have a chronic illness, autoimmune disease or disability (and most of the readers here are) than its important to know that you are not alone, and I hope you find the dignity and support you deserve. You are not alone.
4 thoughts on “Please dont call me that! #Lifeskills #lifestories #strength #struggle #love #dignity”
I have to disagree, for the first tie, with your blog. Too often we hear people with, say, RA climb a mountain, as ‘inspirational’, whereas, I see them differently – as people who may have mild disease activity, stabilised or in remission and not permanently or significantly impacted by the disease. Therefore, those who live with the same disease who can’t do this can be looked upon as less motivated…rather than incapable. It upsets me when we are compared from one person to another because we have the same disease, yet I know people who work full time’ I’m on a pension. Why? Not because I’m lazy or taking advantage of my disease – but because they must be less affected, otherwise they too would be on a pension, and I’m affected severely, otherwise, I too would be working full time.
Therefore, I see people who are inspiring in the true sense of the word ‘instilling inspiration’, as people like yourself. You tell it like it is. You aren’t afraid to hold back on the real story of disability. In fact, I recall one of your blogs talking about people living with chronic illness as ‘heroes’. Either/or – I am inspiring and I am a hero….not because I’m climbing mountains but because I’m living with a severe disability that impacts on every aspect of my life, and do it with very little appreciation from the general public, let alone family.
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I truly appreciate the feedback. Thank you. I hope you continue to share you thoughts and feedback x
That is a word I struggle with also Trish.
Yes I think we always tend to see the good things in other before our own, but I also probably think that might be our nature my friend. I do hope that the things I share and my truth helps people but I also am aware of how much I have been helped too. Thank you for the feedback my friend. x
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