image: lovethispic via google images
It's hard for myself to believe, that from the age of 17 I have been wheelchair dependant. It's an aid that is meant to make life easier for those of us who are told by doctors for the sake of our disability to be using one, but with this comes so many emotions and worries. Again with the majority of aspects in chronic illness, there's a lot of reflective thoughts such as:
These questions don't have direct answers, more so answers we wish to hear to ease our pain in the reality of the situation, yet they won't physically change the attributes or the true reality of our everyday lives living and adapting with disability. If anything, they hinder our growth in acceptance of the process.
Although some may assume incorrectly that the issue must be with your legs when you are dependent on a wheelchair, consciously you need to remember that this is the misconception of wheelchair users. Yes, some people are in wheelchairs because they are severely disabled in many different forms. However, others using wheelchairs don't have to be in one because they are paralysed. They can be in wheelchairs because they can't walk distances, long or short, because they faint, because they are too weak for their body to carry them, because they dislocate, because their bones or muscles are fragile, because they have chronic fatigue forcing them into a zombie type state where it's more than difficult to function. There are seriously so many reasons for a person to be in a wheelchair other than what is drilled into us from a young age to deem correct.
When you become chronically ill and a wheelchair comes into the equation it is very hard to get your head around. How you can go from being able to walk your dog a short distance to becoming bedridden and unable to leave the house without this very obvious and physical object all of a sudden. Especially when growing up you only assume that elderly people should be using wheelchairs. It's something I was hugely embarrassed over and couldn't comprehend for many years. I didn't know of a single person who used a wheelchair, let alone a young person. It's something that not a lot of people surrounding you will go through at a young age so it is an abnormal situation to find yourself in.
Wheelchairs don't always phase people in illness, possibly because some can accept the fact they need one pretty fast and won't let it stop them from doing or achieving what they want, which is fantastic. However, for me I always disliked the thought of giving someone a reason to stare. I hate the attention you receive when in one, I hate to be pitied and looked at, I hate the stares you can receive or puzzled faces as you are wheeled past others. I imagine what others may be thinking, young people especially being my concern. It's horrible to feel so obviously different to others your age. Do they see me as weaker than them? It's a situation I don't really know how to accept or adjust too. Only you will understand how drastically your disability affects your daily life, yet a wheelchair makes it more than obvious to strangers, let alone close family or friends who may know of your health issues.
I often have an overwhelming fear of being seen out in my wheelchair. On one hand, I know how desperately I need it. I want people who I am close too to clearly understand I am not quite able to keep up with their level of abilities but on the other hand it brings me such a feeling of vulnerability. What is strange is that for the majority of the time, I have no problems mentioning I am in a wheelchair to whomever it may be. It's not something I feel ashamed to say, but it's something I feel self conscious of being in and using. Especially local use of a wheelchair. I think this is something to do with seeing people I 'know of', it gives me a great deal of anxiety so I like to protect myself and my vulnerability. My mum often says that it shouldn't make a difference if I was to see someone I know, because if they was a friend they'd know that I was already using a wheelchair and therefore I shouldn't worry if they had an opinion on the situation because they are not a part of my life. Like most, I have always been told that the older you get the less you worry about what others think of you. I'm not quite there in the slightest but you do grow as a person slowly but surely and only time will tell.
In the past I was making outings worse for myself because I was struggling a great deal to keep up with healthy beings, yet I was just so anxious over seeing someone I knew whilst being in my chair, so I would wrongly convince myself I could actually walk and stand for prolonged lengths of time and instead suffer the major consequences. With my illnesses (Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) standing, being upright/on your feet and walking on weak joints, muscles and tissue is not helpful to the body with the symptoms that arise. It causes more damage in the long run to be walking around on our limbs that just are not strong enough to cope with this kind of strenuous physical activity that so many take for granted. We all need to remind ourselves in moments of doubt that our wheelchairs or our scooters are an essential aid for us to get around because our bodies are too weak. I personally saw my wheelchair as something to make me ashamed rather than embracing and accepting the fact that it could help me.
"Why me? Why can't I have the same physical tolerance levels as others? Why can't I be like the rest of my friends? Why do I need this wheelchair so badly?"
Although some may assume incorrectly that the issue must be with your legs when you are dependent on a wheelchair, consciously you need to remember that this is the misconception of wheelchair users. Yes, some people are in wheelchairs because they are severely disabled in many different forms. However, others using wheelchairs don't have to be in one because they are paralysed. They can be in wheelchairs because they can't walk distances, long or short, because they faint, because they are too weak for their body to carry them, because they dislocate, because their bones or muscles are fragile, because they have chronic fatigue forcing them into a zombie type state where it's more than difficult to function. There are seriously so many reasons for a person to be in a wheelchair other than what is drilled into us from a young age to deem correct.
When you become chronically ill and a wheelchair comes into the equation it is very hard to get your head around. How you can go from being able to walk your dog a short distance to becoming bedridden and unable to leave the house without this very obvious and physical object all of a sudden. Especially when growing up you only assume that elderly people should be using wheelchairs. It's something I was hugely embarrassed over and couldn't comprehend for many years. I didn't know of a single person who used a wheelchair, let alone a young person. It's something that not a lot of people surrounding you will go through at a young age so it is an abnormal situation to find yourself in.
Wheelchairs don't always phase people in illness, possibly because some can accept the fact they need one pretty fast and won't let it stop them from doing or achieving what they want, which is fantastic. However, for me I always disliked the thought of giving someone a reason to stare. I hate the attention you receive when in one, I hate to be pitied and looked at, I hate the stares you can receive or puzzled faces as you are wheeled past others. I imagine what others may be thinking, young people especially being my concern. It's horrible to feel so obviously different to others your age. Do they see me as weaker than them? It's a situation I don't really know how to accept or adjust too. Only you will understand how drastically your disability affects your daily life, yet a wheelchair makes it more than obvious to strangers, let alone close family or friends who may know of your health issues.
I often have an overwhelming fear of being seen out in my wheelchair. On one hand, I know how desperately I need it. I want people who I am close too to clearly understand I am not quite able to keep up with their level of abilities but on the other hand it brings me such a feeling of vulnerability. What is strange is that for the majority of the time, I have no problems mentioning I am in a wheelchair to whomever it may be. It's not something I feel ashamed to say, but it's something I feel self conscious of being in and using. Especially local use of a wheelchair. I think this is something to do with seeing people I 'know of', it gives me a great deal of anxiety so I like to protect myself and my vulnerability. My mum often says that it shouldn't make a difference if I was to see someone I know, because if they was a friend they'd know that I was already using a wheelchair and therefore I shouldn't worry if they had an opinion on the situation because they are not a part of my life. Like most, I have always been told that the older you get the less you worry about what others think of you. I'm not quite there in the slightest but you do grow as a person slowly but surely and only time will tell.
In the past I was making outings worse for myself because I was struggling a great deal to keep up with healthy beings, yet I was just so anxious over seeing someone I knew whilst being in my chair, so I would wrongly convince myself I could actually walk and stand for prolonged lengths of time and instead suffer the major consequences. With my illnesses (Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) standing, being upright/on your feet and walking on weak joints, muscles and tissue is not helpful to the body with the symptoms that arise. It causes more damage in the long run to be walking around on our limbs that just are not strong enough to cope with this kind of strenuous physical activity that so many take for granted. We all need to remind ourselves in moments of doubt that our wheelchairs or our scooters are an essential aid for us to get around because our bodies are too weak. I personally saw my wheelchair as something to make me ashamed rather than embracing and accepting the fact that it could help me.
A wheelchair is actually for your own safety. People are less likely to knock into you or cause damage to your already fragile body. In my illness; I dislocate without any warning. I also pass out when blood pools in my legs, therefore not making its way to my heart and pumping overtime in order to reach there. Wheelchairs can lengthen the time you manage to be out, they do not in the slightest ease the pain you may already be in but they can help to preserve your energy. There have been times in the past where I have been out and after 5 minutes I am exhausted or feel faint and have had to resort to sitting on the floor because of lack of chairs around. It sometimes takes a scary experience to realise that it's more than beneficial to be in something that is causing you great fear.
Obviously the reason most of us are housebound is due to high levels of pain so sometimes we are unable to leave the house full stop. However of course l would like the confidence to be able to get out more in my chair. On days where I feel up to pushing myself, I would like to not be embarrassed to use my wheelchair. Although, I will say that the worse my pain and disability becomes the more accepting I become of my wheelchair because I know it really is truly necessary. I know that I can not physically stand a walk a distance greater than a couple of metres without an aid.
I've since stated taking baby steps. The more I go in it, the more my confidence grows and I become more at ease with the process and I really hope this evolves positively over time. Although the amount I physically am able to leave the house is minimal, when I do the wheelchair is now always the option. I now have taken my wheelchair to 5 concerts over the last year. Considering I would not even have the confidence to use it in England because I was embarrassed, I seem to somehow dig deep, find some confidence I didn't think was there and sit in it with thanks to those around me telling me to not be frightened to use it. I do notice it preserves some energy, it doesn't stop the pain, in fact it can sometimes be quite uncomfortable but I do understand that it is necessary. I also take it to hospital appointments as the building is usually huge and far too long a walk. Other than that friends visit me at home so what I do manage is catered to my disability.
There shouldn't be a stigma to young people in wheelchairs or at least so many of us feel like there is. Being young and using a wheelchair, although something that may not seem as largely common is also a necessity in your quality of life when you have a chronic illness. Confidence will always come into play for those of us who lack in this area, but try to keep perspective. A wheelchair is a tool to get you out more and help improve your quality of life. Don't make the mistake I made by being frightened for so long and putting off using your wheelchair through worrying of others opinions. Will you see those people again, probably not. It's a huge achievement to use your wheelchair when you feel like you don't have the confidence and how anxious it may make you feel. There is nothing to make the situation any easier to accept other than the fact that you NEED the wheelchair, for your own safety, it's a necessity despite how stubborn or against it you may feel.
Obviously the reason most of us are housebound is due to high levels of pain so sometimes we are unable to leave the house full stop. However of course l would like the confidence to be able to get out more in my chair. On days where I feel up to pushing myself, I would like to not be embarrassed to use my wheelchair. Although, I will say that the worse my pain and disability becomes the more accepting I become of my wheelchair because I know it really is truly necessary. I know that I can not physically stand a walk a distance greater than a couple of metres without an aid.
I've since stated taking baby steps. The more I go in it, the more my confidence grows and I become more at ease with the process and I really hope this evolves positively over time. Although the amount I physically am able to leave the house is minimal, when I do the wheelchair is now always the option. I now have taken my wheelchair to 5 concerts over the last year. Considering I would not even have the confidence to use it in England because I was embarrassed, I seem to somehow dig deep, find some confidence I didn't think was there and sit in it with thanks to those around me telling me to not be frightened to use it. I do notice it preserves some energy, it doesn't stop the pain, in fact it can sometimes be quite uncomfortable but I do understand that it is necessary. I also take it to hospital appointments as the building is usually huge and far too long a walk. Other than that friends visit me at home so what I do manage is catered to my disability.
There shouldn't be a stigma to young people in wheelchairs or at least so many of us feel like there is. Being young and using a wheelchair, although something that may not seem as largely common is also a necessity in your quality of life when you have a chronic illness. Confidence will always come into play for those of us who lack in this area, but try to keep perspective. A wheelchair is a tool to get you out more and help improve your quality of life. Don't make the mistake I made by being frightened for so long and putting off using your wheelchair through worrying of others opinions. Will you see those people again, probably not. It's a huge achievement to use your wheelchair when you feel like you don't have the confidence and how anxious it may make you feel. There is nothing to make the situation any easier to accept other than the fact that you NEED the wheelchair, for your own safety, it's a necessity despite how stubborn or against it you may feel.
So here comes a challenge!
I challenge those of you who have a wheelchair but are too frightened to use it in public, to use it when you next manage a trip out. Rather than think of the negative thoughts the wheelchair may arise, instead focus on the positives e.g energy/fatigue levels. For those who use a chair frequently but tend to look at the floor (I'm talking to myself here too), see how many times you look up when going past groups of people young or old in your chair.
No comments:
Post a Comment