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I’m not disabled I’m Chronically Ill

There has been quite a bit of a push recently to have Fibromyalgia recognised as a disability, this is something I have contributed to as well. However, stepping back from the situation this no longer seems to me to be the right course of action. Instead, I think, we need to be fighting for more recognition and understanding of being chronically ill. If you are unfamiliar with Fibromyalgia check out this post which goes into some detail to explain it.

Why the Change of Heart?

You may be wondering at this point why? So I hope to enlighten you and you never know you may even agree with me. When you think about disability things that come to mind are the loss of limbs or the loss of the use of them. You think of people who are blind or deaf or some other sensory impairment. There are multiple conditions under the umbrella of mental health that naturally lead to people being classed as disabled. Firstly, let me get this very straight I am eternally grateful that I do not have to deal with any of those, I could not imagine having to live without one of my senses or the (somewhat) use of my body. I am also most definitely not undermining the seriousness that is involved both for people with disabilities and for all those who love and care for them so no haters, please. However, for the majority of people living with a disability there life is relatively stable and adjustments can be made to help them manage. As an example, if someone is deaf workplaces can install textphones to allow them to carry out their duties. A person who is blind can use the assistance of a guide dog and read in brail. A person who does not have use of their legs can use a wheelchair and if the finance is there they can get adapted cars to allow them mobility. People with disabilities have shown superhuman abilities you only need to look at the Inspirational Paralympic Games, the marvellous Invictus Games and of course the supreme undertaking on the Walking with Wounded. I am aware these are just a few basic examples but I think they allow me to highlight my point that once the provision has been made for the disability they can lead some sort of HEALTHY life, maybe not to the same quality as before their disability or of someone without disability I certainly understand but a stable existence (unless of course, they have a chronic health condition as well as a disability)  in which case they need all the support we can possibly give them.

The Complications of Fibromyalgia

People who have Fibro and other Chronic Illnesses have a totally different experience to someone with a disability. There are no aids or coping mechanisms to allow them to adapt to their condition. Yes, aids and mechanisms can be used to make things easier but not to allow you to participate to a similar standard of activity as a healthy person. There are days when you may be feeling good, most people who have been living with their condition for a couple of years or more get to know their limits. They understand how many spoons are at their disposal, to briefly explain Christine Miserandino’s brilliant Spoon Theory. Each person has a certain amount of spoons to use in a day, each and everything you do uses a certain amount of them. Things that a healthy person can do with little thought like having a shower, going up and down the stairs or even popping to a shop all eat into your spoon allowance. That is why people with chronic health conditions are sometimes referred to as spoonies. On a good day, I may have 30 spoons.  If I stay within them there is a chance I may have a run of a few good days until something upsets the balance, like a weather change or something stressful happening. If I use more spoons than my daily ration there is a good chance that at best I will be exhausted the next day or even worse cause a flare-up (this post explains flare-ups in more details). The reality for many sufferers is though, that when you get a good day and you feel a little bit like your old self you are so desperate to do all the things you are feeling guilty for not doing it takes serious restraint to not overdo it. An awful lot of people who suffer from chronic health conditions seem to have had full busy lives beforehand. I have not yet come across a single person who could be called lazy or a couch potato before their health condition set in. As such, many people are dealing with side effects like depression brought about by their reduced circumstances.

To get to the point

When you live with a chronic health condition any day can be a bad day, sometimes brought about by yourself overdoing things, trying to forget about your condition and do more with your life, sometimes brought about by something as simple as a storm cloud and a change in the air pressure. To put it in perspective a healthy person stands a good chance of catching a cold two or three times a year, if they are unlucky they may catch flu possibly once in the year. Everyone can get ill and employers have sickness policies to allow for this. Let me put this thought out there. What if there was a good chance you were going to have several flu bouts in a year and most weeks you would catch a cold.  Think about trying to make plans.How would you know which day of the week to make plans for, how would your employer feel if there is a good chance you may be off work as much as you are there. The simple fact is that the economy couldn’t run efficiently in that manner. We would grind to a halt.  The other thing I have discovered is most people with chronic health conditions are fairly intelligent and fully comprehend the effect their condition is going to have on their lives and that of their loved ones. 

I’m not Disabled I’m Chronically Ill

I do not have a disability that anyone can provide an aid for simply because there are so many differing symptoms to my health syndrome. Equally, I am not severely disabled enough to have a box ticked next to my name saying I have nothing to offer and society should have no expectations of me. I just want people to understand that I am Chronically Ill and I’m doing the best I can.

I am Chronically Ill

I really hope I haven’t offended anyone in any way with this post, that was the furthest thing from my intention. Do you agree with my thoughts or do you see things from a different point of view I am really happy to have a conversation with you? Do you agree with me? If so let me know in the comments or on social media.

Until next time,
Gentle Hugs,
Susan

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7 Comments Text
  • Hi Susan,
    This is an insightful article. I do agree I am not disabled – I have chronic illness. Some days I can barely walk and others I can! Thank you for linking this up at Fibro Friday a few weeks ago AND I was hoping you would link it up again.

  • I just got cleared for a disability payment from the government. I really wish there was another name for it as I struggle with the label. It’s like a full stop.
    You can’t work , your no use. Take this and go away
    Don’t get me wrong. I am hugely great full it just does my head in

    • I know exactly what you mean Marg, in the UK we have Personal Independence Payment which is a little easier. This is something you can receive whether you work or not to help adapt your life. If you have another half that works after a period of six months you are not entitled to any “living” benefits, your partner is expected to support you. A reason why so many people in our circumstances try to do something entrepreneurial when we are well enough, to make some sort of money of our own.

  • Hi,

    Thank you for your blog which I read with interest.

    I personally think we have a chronic illness that is debilitating and should be recognised as a disability.

    As you recognise there are a lot of people that led strong vibrant lives that are now unable to participate in their previous life much like losing a limb going blind etc. Yes I agree there is no magic wheelchair or walking aid, guide dog to improve the constant changing situation but with the disability word linked to fibro it does open a lot more doors without having to fight even harder to get people to understand.

    To be able to get financial aid for those days that are no longer covered by sickness pay.

    Yes I have a debilitating chronic illness with many facets and I would love to get help without having to fight for everything

    • Thanks, Claire, thank you for commenting. I get your point totally. I am happy in some ways with the disability label but the distinction between disability and chronic illness is something that employers really need to understand. You can’t have a workplace assessment and carry on as normal. I think the disability status is really a stepping stone towards really understanding the reality of chronic illness.

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