Living with an invisible disability

I read a letter in our local paper recently, in which someone was complaining about what he called the “misuse” of the disabled Blue Badge parking scheme. He claimed to have seen many people, with Blue Badges, park in our local disabled car parking spaces then “leap out” of their cars and “stride” into town.

Now, I have no doubt whatsoever that there are some people who misuse Blue Badges. Someone might be a carer or relative of a Blue Badge user and use it occasionally to make parking easier (this is a criminal offence – I think some people are not aware of this fact). There will also be some people who are such good actors that they’ve been able to pull the wool over the Blue Badge assessors’ eyes, or whose condition has improved since they obtained their Blue Badge. The former reason is less likely, in my opinion, as I have attempted to get a Blue Badge and believe me the assessors are harsh. I didn’t get one.

However, there will be even more people who have a hidden disability. If you saw me get out of a car and walk away, you would not for one moment think I had mobility problems, particularly on a good day. You can not see the pain I have to ignore to get up and walk. You don’t know that I can only walk a relatively short distance before I need to rest or stop. I don’t use a stick or crutches. I don’t use a wheelchair. In order to lessen my pain, I have to walk fairly quickly, as walking slowly is agonising. Perversely, not walking is worse for my general pain levels, so I will often walk despite my pain because, in the long run, it helps.

Over the years, I have come across a lot of “disable-ist” thinking. One of my former clients, on being told I had a disability, was shocked when I turned up to our first meeting without a wheelchair. For him, disabled meant wheelchair-bound. I often describe myself as disabled and get looked up and down with disbelief. And I know there are thousands of people like me out there, living life with pain, deafness, mental health problems, learning difficulties, head injuries…the list goes on and on.

For me, one of the most disabling aspects of my conditions (which are chronic pain in my back, legs, shoulders and neck plus a mild form of cerebral palsy) is the fatigue. People who are not living life with a chronic illness can not understand the amount of energy it requires to get around each day. At the moment, because my neck and shoulder pain has flared up over the last nine months or so, I am so tired by the energy needed to get up and get dressed that I have to go back to bed for an hour afterwards. This lack of energy has been brilliantly explained by something called The Spoon Theory , which was written by a woman in the USA who is living with chronic illness. I would recommend that everyone reads this theory, as it explains so well the way chronic illness affects your energy levels and how those of us who live with this have to plan, prioritise and pace everything we do. On the excellent Pain Management course I attended some years ago, these were referred to as the three “Ps” , and they rule my life.

For example, tomorrow I have work in the morning (I can only manage three hours a day each weekday or my body lets me know!) then I am meeting a friend for lunch. I will then have the recorder group I run come round to my house in the evening for a vital rehearsal before a performance this weekend. I try not to let my disabilities stop me from enjoying my life, so in come the three “Ps”.

I have made sure that I have nothing to do this afternoon or evening. I will probably go for a walk, but other than that I will do restful things, such as napping, colouring (which really helps me destress), reading and watching TV. I may well go to bed early. Tomorrow, I will probably limit my work to two hours (I work from home, so can be flexible). I will then go out with my friend. This is always good for my mental health, but exhausts me physically, so I will come home and sleep for at least an hour. I will then chill out (as above) until my recorder group arrive, another activity which I love to do, but which exhausts me physically. Once they leave (around 8pm) I will probably go to bed. If you read this last paragraph back, you can hopefully see that I have used the three “Ps” as effectively as possible, leaving room for the other thing which I learned at Pain Management, which is that “some things are worth it”. I will be more tired on Wednesday, but seeing my friend and running my recorder group will be so good for me personally that it will be worth it.

Every day of my life has to be planned this meticulously, every activity I add to my diary carefully weighed against any other activities I have that day/week. Sometimes, I have to cancel things I wanted to do because I have things I have to do, and I can’t do both. Then there are the days when I wake up so tired or in so much pain that no activity is possible, making me an unreliable friend and meaning I may have to cancel some other things later in the week to allow me to fit in essential activities (such as work) that I am not able to do that day.

S0, next time you see someone with a Blue Badge get out of their car and walk normally into town, don’t assume they are swinging the lead. They may well be living with an invisible chronic illness which means they really need that badge. In this time of increasing polarisation and a “them and us” mentality, please think before you judge.

 

Advertisements

About Liz Terry

I love to write, and have had quite a few articles published over the years. I write non-fiction on all sorts of subjects, including my own life and what matters to me. I write a blog, called "My Random Ramblings", which you can access by clicking to view my complete profile and then clicking on the link at the bottom. I've also wrote a new blog in 2013 called "The 365 Project - a photo diary in words". Intrigued? Then you need to click to view my complete profile and click on the relevant link at the bottom.
This entry was posted in Activism, Disability, Education, Health, My Life, welfare and tagged , , , , , , , , , . Bookmark the permalink.

One Response to Living with an invisible disability

  1. Dee Robotham says:

    I am Dee. Liz’s wife and also a fellow chronic pain sufferer. Every word of this post is true. If anything she has understated the difficulties that she lives with. I am the only one (apart from her sister) who ever sees her in tears because she is unable to do something, who she lets see the strain and difficulty she puts up with. To the outside world, mostly, she smiles, is kind and understanding and a fantastic listener to other peoples’ problems. If she is sometimes a bit short tempered it is usually because she is in more than the usual amount of pain. She was refused a blue badge because she managed to walk fifty yards without stopping on that day. Forget about the days she can hardly get out of bed.
    And on the issue of blue badge misuse, I would say rather than people abusing their blue badges, a far greater problem is able bodied people parking in disabled bays.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s