Hi! My name is Chloe Tear, I am 19 years old and I'm a university student studying Psychology and Child Development. I have mild cerebral palsy which affects the left side of my body as a result of being born 8 weeks early and weighing 3lb 3oz, as well as epilepsy, chronic pain and impaired vision. During this blog, I will talk about what it’s like being a student who may face a few more hurdles than most. I hope you're able to follow my educational journey because anything can happen!
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Chronic pain does exists even if it seems invisible
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that having chronic pain doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been in pain for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for an hour doesn’t necessarily mean that I can stand up for two hours or more. Just because I managed to walk around yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk all around school and back, while the next day I’ll have trouble getting to the next room when I wake up. Please don’t attack me when I’m unable by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am constantly having a battle with myself about this matter as my mobility decreases. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression. I try to keep this at bay and be as positive as possible.
Please understand that if I say I have to sit down/stay in bed/or take these tablets now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made worse, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you – people who are not in constant pain. You can help me to get through the day, be that extra helping hand. Also keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
In order for me to complete university away from home, and get to lectures in one piece- a PA (Personal Assistant) has been vital in me being able to be as independent as possible. I have actually enjoyed the process of hiring PA’s despite it being a little stressful to find one in time. Yet, when looking for a PA, it had to be someone who could drive as well as being capable to suit all of my needs. By having a car it would mean that I could get to hospital appointments easily. However, when advertising it was often extremely hard to find someone who was fairly young (not that this is essential!), was capable of the job, could drive and was okay being with people aged 19- 21 all of the time. After 30+ applications it became clear this was all quite a big ask! Who knows my full medical history? Who would have experience in Cerebral Palsy, seizures and visual impairment? Who can drive and wouldn’t mind being with young adults all day? Who would actually quite enjoy lectures? There is a…
Dear Chloe, You're currently 7 years old and are about to embark on a journey of a lifetime. This journey will show you the world in a completely new light, it will show you things you never thought you would see, and allow you to meet people you might otherwise have never met. Unfortunately, this journey is tough, it will test you past the limits you thought you had and cause so much frustration and upset- but you are capable of overcoming this, you can find tremendous joy in every aspect of your life. You have just been diagnosed with mild cerebral palsy. You have never heard of this, and have no idea what it is! But don't worry- mum's done lots of research and has your back! These hospital appointments may seem strange, and unnecessary as you don't think anything is wrong, but it will all become clear with time. Ever wondered why you walk on your toes and fall over more than your friends? Ever wondered why you can't hop, struggle with maths and feel tired? Or hav…
I am a part-time wheelchair user, this means that one day I can use my chair, and the next I can be walking with my stick. Being able to use a wheelchair on a part-time basis allows me to managed my energy levels and reduce pain, allowing me to function more effectively in everyday life. I am exactly the same person whether I use my stick or my chair, so why does the behaviour of others sometimes change?
Over the last few years, I have noticed people act differently to me depending on the equipment that I am using at that time, yet it was when doing my food shopping, of all things, that made me realise what those differences were.
I've noticed that when I use my stick, people don't tend to mind. I sometimes get a few inquisitive looks as they tried to figure out why a 19- year- old is using a walking stick, but apart from that it is fine. People in shops talk to me, telling me how much the items cost and expect me to pay- good job really considering it is my food for the week…