There is currently an international movement for the inclusion of students with disabilities in education. ‘Mainstreaming’ occurs when a child with special needs and/or a disability is taught in general classes while learning from the regular curriculum while receiving additional assistance when needed.
I had always gone to mainstream public schools up until the tenth grade when my parents decided to home-school me. Throughout my years in mainstream schools, there were times where I was the only student in mainstream classes with cerebral palsy and chronic illness. While I had support such as an IEP (Individualized Education Plan), the importance of inclusive learning wasn’t a topic that was really discussed.
Disability Awareness as Part of the Curriculum:
It’s important that the inclusion of children with disabilities and chronic illnesses is discussed in mainstream schools because we need to educate students about the different types of disabilities and chronic illness. This way, able-bodied students can have an idea about what students with disabilities and chronic illnesses have to face. This could encourage them to help their fellow students to have an easier school day.
We should also be discussing the topic of Disability History in schools, while learning about disability advocates such as Ed Roberts, who was the first student in a wheelchair to attend the University of California, Berkeley. He used his platform to speak out about disability rights for all. There is so much history that could be taught to students that currently isn’t.
Disability Awareness In Children:
Some teachers have witnessed that the inclusion of students with disabilities in mainstream classes has led to greater patience and understanding from the other students towards people with disabilities. This patience then transfers to the wider community as the students continue to grow and communicate.
From experience, I know that every time I entered a new school year it would be like starting kindergarten because I would have to constantly answer questions from others about my disability. Sometimes kids in society can be very blunt and sometimes the way kids would ask me questions about my cerebral palsy would be rude. Though I know they didn’t know that they were being rude.
This could be avoided if we had awareness in schools about the different types of disabilities they are and how one can differ from the other. For example, I find that spina bifida and cerebral palsy are two disabilities that get mixed up often. While they both can result in people using wheelchairs, they are two completely different disabilities.
Further education about people with disabilities shouldn’t end with students; Teachers should also receive more education about how to be inclusive towards students with disabilities and chronic illnesses.
Adapting education to be inclusive
Along with having a curriculum featuring disability activism that is taught in all education levels, we should also have adaptive activities for people with disabilities to participate in throughout the school year. This could include certain events that bring awareness to people with disabilities like a disability awareness week.
This could give a voice to students with disabilities and allow the students that have a hard time fitting in due to their disability a platform to share their experiences. This could allow them to bring awareness to the obstacles they face as students who are in an environment that wasn’t made for them, and how they must adapt, which can be extremely difficult.
I strongly feel that we as a community need to start fighting for schools to teach students about disabilities and chronic illness because knowledge understanding is the key to living in a world where everyone can feel accepted.
About the author:
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
We hear the phrase “you can do anything if you try,” or something similar, throughout our entire lives; starting at preschool and kindergarten and continuing throughout school. And sure, for many children this may be true; if they put their efforts into something, they may eventually master their craft and achieve all their goals.
However, this phrase completely ignores the fact that we each have our own unique strengths and weaknesses. Someone who is naturally good at maths is going to do far better in that subject than someone who is not. And that’s ok.
This phrase becomes even more illogical once you consider that it is also often applied to disabled and chronically ill youth. When experiencing a disability or chronic illness, you often can’t do certain things, no matter how hard you try. So why is it being drilled into disabled and chronically ill youth that they can? Isn’t this harmful? Wouldn’t this lead to false expectations and damaged self-esteem?
You may be reading this and be thinking that I’m just cynical. This article may even be seen as a little negative and controversial. However, for me, finally realising that I couldn’t do ‘everything if I put enough effort into it’ was freeing. I’ll explain why;
Coming to the realisation that I can’t do everything I try
After a lifetime of feeling like I haven’t been achieving enough (through my grades, sport, etc.), last year I had to give up studying the course that would have led me to my dream career due to my health. I felt so dejected because all my life I had been taught that I can do anything if I try hard enough.
The thing is, I WAS trying. I was working myself into exhaustion, but it still wasn’t enough. I felt like I wasn’t enough. I felt horrible about myself, to the point of feeling depressed. However, I got back up and found another course that I would be able to study without having as big of an impact on my health. I still felt horrible, but I did my best and found that this course was a lot better for me.
Six months in, I came to a realisation. I didn’t fail at continuing with the previous course because I wasn’t trying hard enough, I failed at continuing because my health didn’t allow it. It wasn’t apathy on my part, it was an actual, physical limitation.
Once I accepted my limitations, this led me to become a lot more accepting of myself. I wish I had come to this conclusion sooner; it would have saved me a lot of heartache.
Being told that I could do anything I wanted as a child set me up for a lot of disappointment. And despite how harmful this narrative is, I see evidence that it is still being told to children every single day. Here are some other phrases that are often directed at chronically ill and disabled youth that also fit within this narrative:
“The only disability in life is a bad attitude.”
This one especially upsets me. It wasn’t a bad attitude that caused me to experience immense chronic pain on a daily basis starting in childhood. It isn’t a bad attitude that has left me using a walking cane most of the day to get around.
This phrase takes the word “disability”, a word that has a lot of meaning to a lot of people, and tries to change the definition completely. This phrase frames disability as apathy towards carrying out tasks, rather than an actual inability to carry out these tasks.
The “What’s your excuse?” comparisons
You may have seen memes depicting disabled athletes, with phrases written across them saying things such as “what’s your excuse?” or even worse, “Your excuse is invalid.” These memes basically use disabled people to shame others (including other disabled people) into thinking they need to adopt certain habits or push themselves past their limits.
I understand wanting to come up with a viral, inspirational meme, but chronically ill and disabled people should not be exploited in the process. I know able-bodied and disabled people alike who agree that these memes are very harmful, especially in an age where social media is such a huge part of our lives, even more so for the youth.
My “excuse”, as they put it in the second quote, is certainly not “invalid”. I will never be an award-winning athlete, as the constant pain and exhaustion make exercise difficult. I will never be an award-winning mathematician because the brain fog makes remembering formulas difficult. I’m ok with that.
As I said above, everyone has their own strengths and weaknesses. Just because one disabled or chronically ill person achieves something, does not mean every other disabled or chronically ill person can.
You can’t judge a group of people by the actions of a few, and they certainly shouldn’t be shamed just because a member of the community has achieved something that they haven’t.
“There’s no such word as ‘can’t’”
This phrase confused me a lot as a child. Mostly because my young brain would take it literally, and I knew the word “can’t” did exist. When I was presented with this phrase, for the longest time I would go fetch the dictionary to prove them wrong.
It also confused me because I knew there were things that I, and other humans, couldn’t do. I can’t fly independent of a form of aircraft. I can’t breathe underwater without using a snorkel or oxygen tank. The word “can’t” doesn’t have to be a negative word attributed to pessimists, and knowing when to accept your limits shouldn’t be considered negative either.
“Don’t let your disability define you.”
Another phrase that is often said to chronically ill or disabled youth is that we “shouldn’t let our disabilities/chronic illnesses hold us back” or “shouldn’t let our disabilities/chronic illnesses define us”. I find this to be a very naive take.
Sure, we aren’t wholly defined by our disability/ies, but what we are able to do often is. There are ways to overcome these challenges, but only to a certain extent. There are some things that, no matter how hard you push yourself, you’ll never be able to achieve.
Accepting that isn’t letting your disability define you, it’s understanding your limits and knowing there are better areas to concentrate your energy.
I’ve even had people tell me that I shouldn’t talk about my chronic illness or disability – at all. That talking about my chronic illness or disability is letting my health control me and consume my thoughts.
My disability is a part of me. I can acknowledge my disability’s effect on my life and be proud of what I achieve despite it without letting it define me. Not to mention, it’s hard not to think about your chronic pain when you experience it every minute of the day… But that’s easy to ignore, right?
While on the surface these phrases may seem inspirational, they may do more harm than good when it comes to disabled and chronically ill youth. They can lead to false hope, which can chip away at the young person’s self-esteem when they don’t achieve everything they aim to like it did to me.
Not everyone can do everything, no matter how hard they try. Instead, we should be encouraging disabled and chronically ill youth to try their hardest to achieve goals that are realistic, yet also push and challenge them at the same time.
If there’s one thing I want disabled and chronically ill youth to take away from this article, it is that you should feel comfortable doing what you CAN. With the help of those who care about you, set your own pace in life.
Push yourself, but not so hard that your goals become unachievable. Don’t let society tell you that trying your hardest isn’t good enough, because it is. Know that you are enough.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
Cerebral Palsy (CP) is a group of permanent movement disorders that appear in early childhood. Signs and symptoms vary among people and over time. It is the most common motor disability in childhood.
Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing, and speaking.
Read more about why awareness is so important.
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” –Christopher Reeve
Writing
Tap tap tap tap with each letter I press on the keyboard becomes me telling my story of 24 years of life experiences from my point of view.
Over the years I get asked this question – what made you decide to want to write about your Spastic Cerebral palsy?
I write about my Cerebral Palsy because I want to bring awareness to the positive side of having the condition, but I also want to bring awareness to the raw truth about Cerebral Palsy.
In all seriousness, I write about my condition to end the stigmas about Cerebral Palsy and the condition itself. One of the stigmas I strongly dislike is that people with Cerebral Palsy can’t live an average life and are not able to get jobs or to go to college.
That’s why I write about my life whether it be through my blogs, books or poetry. I always find a way to bring awareness to a condition that is often thrown under the rug although 17 million people have Cerebral Palsy, unfortunately.
Realistically Speaking
Cerebral Palsy isn’t spoken about much as a writer and as a person who speaks out on the deep topic, I feel that it’s important for others to get educated about disabilities and the stereotypes we have to face on a day to day basis in our society.
When I write about my condition it makes feel as if I could express myself without having to be cautious about the situation and how people perceive me, since I sometimes mispronounce words and stutter at times when I am talking. With writing, I don’t have to worry about being judged about my Cerebral Palsy or the way I stumble with some of my words. I can just be myself and my message comes across clearly and I gain the confidence I need to continue stomping on Cerebral Palsy
When I am writing it feels like I have the whole world in my hands and for a split second, I forget I have Cerebral Palsy. I use writing as a way to cope when I’m feeling down about my CP. I just open my laptop and start writing from my heart about whenever it is I’m going through, and I’m reminded that I will be okay and I have to keep on pushing through.
About The Author
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
Since I first started complaining of experiencing Fibromyalgia symptoms such as chronic pain at the age of 7, attending school has progressively become more and more difficult. Now, 12 years later, I experience constant widespread pain and fatigue. Despite the constant pain that is undoubtedly made worse by me attending university, I still love studying.
I’m the kind of person that enjoyed attending school as a child, and since I’ve been signed off work by my doctor, I feel like I’d be incomplete without study. Distance study could be an option for me since I become exhausted easily, however, I find that I don’t have the same motivation to complete work that I have when I attend classes at a campus.
I find that I have the mindset of if I travel into university, I may as well make the trip worth it by getting as much work done as possible. Plus, despite how boring they can be, I love the vibes of lectures and tutorials.
Please keep in mind that since I live and attend a university in New Zealand, some of these tips and tricks may not be applicable internationally. However, I hope that some of these tips and tricks are helpful to any students with chronic illness who may be reading this article.
Don’t Discount The Option Of Part-time Study
When I was first applying for university, I didn’t want to think about part-time study. I thought that because I (barely) managed full-time study through high school, I should be able to manage full time at university too. Basically, I was in denial. I thought that studying part-time would mean that I wasn’t coping as well as I should be and that I would be less of a student.
Luckily, I was turned down for the full-time program I had applied for, so instead, I had to do a part-time, four days a week program for a year to see if I would cope with the difficulty of the classes. While I did pass my classes during that year, the four-days-a-week schedule was very stressful and caused my health to go downhill.
Due to this, I had to dismiss the full-time program as an option for the next year, despite it being the only program that would give me the qualifications I need for my dream career. When I first had to come to terms with this it was a little heartbreaking. It felt like my dreams and aspirations were crumbling down around me. I now am studying part-time, three days a week in a completely different field. And while this is still difficult for me, I am far more comfortable attending university than I was before.
Contact Disability Services At Your Institution Of Study
When I first started applying to universities during my final year of high school, one of the first things I did was check out their Disability Services and the application process. I had been under the high school equivalent, which, I was told, considerably increased my chances of being accepted by the service. Being under similar services at high school gave me insight as to what to expect and what assistance I may be able to ask for.
The application process was pretty simple. I was given a form to fill out, which required not only a doctor’s input as to what assistance I required but also allowed me to write a paragraph myself about my chronic pain and how it affects my studies. I also attached some notes from my Chronic Pain Clinic Physiotherapist, who I had been seeing for the past two years at that stage, to add further context to my application.
Disability Services has helped me with many things. They have made sure I have a supportive chair in the classes that allow it, and exam considerations such as rest breaks (due to my back pain) and extra time (due to me having Complex Regional Pain Syndrome in the wrist I write with, and brain fog causing concentration issues). I definitely recommend checking to see if this is an option available to you at the institution you attend.
Don’t Be Too Self-conscious To Use A Walking Aid If You Need One
I have been using a walking cane since I was 16. Before that, I had been using crutches constantly to help cope with my hip, knee, ankle, and back pain. I switched to a walking cane because crutches became too harsh on my back and shoulders, causing too much pain to make using crutches worth it.
Being a young person who uses a walking cane, there are times when I can become very self-conscious, especially around other people my age. As you can imagine, this left me very anxious about the prospect of using my walking cane at university. However, I realised that I do need the walking cane to get through the day without collapsing from pain and exhaustion, so I decided that what other people thought of me didn’t matter.
Since my pain levels fluctuate, I love using a walking cane that folds up. This means that I can pack it away in my bag when my pain levels are lower, and then bring it back out when my pain levels are high.
Set Daily Or Weekly Study Goals Instead Of Schedules
Many students like to create an hour-by-hour schedule for completing their assessments and studying content from their lectures. However, when you’re in constant, fluctuating pain, this may not be manageable for you. For me personally, setting a schedule would be like setting myself up to fail, because my pain levels are never at a constant level (unless I’m having a really bad day and the pain is constantly high).
So, say I schedule an hour of study for 4:00pm. I may be feeling ok that morning, but by 4:00 I may be so tired and sore that I can’t concentrate. Instead, I like to set goals such as reading a chapter of a textbook a day leading up to an exam or aiming to complete a certain amount of an assignment within a certain amount of time.
During a particularly bad flare, I may not be able to achieve these goals, but when I’m not in extreme amounts of pain, these goals make studying while in pain achievable.
Keep Your Medication On You
I’m often guilty of forgetting to do this. While I take two large sets of pills first thing in the morning as well as at night, I also take pain medication during the day if required. I find it is far better to have my medication with me and not need it than it is to need my medication and not have any on me.
Since I travel two and a half hours each way to get to my university, the chances are high that I’ll need medication at some stage during the day. Being in too much pain can seriously affect my ability to pay attention in class and take notes, which in turn can put my grades at risk.
For this reason, it is imperative that I don’t forget to pack a sleeve of pain pills in my bag. I also love taking a small tube of Voltaren Emulgel with me to university. It is great for massaging acute aches and pains and works especially well on the swelling I get in my wrist.
Explore Your Campus And Find A Place You Can Rest In Between Classes
If you don’t live on campus and suffer from fatigue, this tip can be incredibly useful. My favourite space to rest at university is a room in the library that has couches and large bean bags. If a bean bag is available, I can put all my stuff down, lay back, and relax. This space also allows eating and drinking, so I can eat lunch and chill in this space.
Stay Hydrated
This tip may seem extremely obvious to people, however, I am often guilty of not drinking enough. I personally like to pack a water bottle that is at least one litre in my bag. While staying hydrated isn’t going to cure your symptoms, it does help with your overall feeling of wellness.
Use An Online Editor For Your Essays
This is honestly a life-saver when it comes to handing in essays. Often when a deadline is looming and I’m finishing off my assignment, my stress levels rise, and as a result, my pain and fatigue levels also do too. This can lead to me experiencing brain-fog as I write, which can result in anything from grammar mistakes to me writing utter nonsense without realising it.
Using a free online editor program such as Grammarly, I can detect any grammar, spelling, or punctuation errors and correct them.
Pace Yourself
It’s very easy to think you can push through your pain, but then you may end up pushing yourself too hard. It can be so incredibly tempting to “boom and bust”, this, however, can cause more harm than good, especially to your health. For the good of your health and grades, try not to take on too much work at once.
While attending University is definitely a struggle, I absolutely think it’s worth it. It gives me a sense of purpose that I may not have otherwise, and a chance to socialise and expand my knowledge. I hope these tips are useful to any students with chronic illness, and I wish you all the best with your studies.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
Painsomnia, a combination of the words ‘pain’ and ‘insomnia’, is often used in the Chronic Illness community to describe the inability to fall or remain asleep due to suffering physical pain. People with Chronic Pain can often experience painsomnia, which can result in chronic fatigue.
Experiencing Painsomnia as a Child
I was about 7 years old when my parents first became worried that I was complaining of being in pain far too often. I complained that my back and hips hurt, and nothing seemed to ease the pain. My parents would struggle to get me to sleep every night. My mum tells me that I would constantly get in an out of bed, and they would often give me paracetamol and send me back to my room. All the tests that I underwent came back clear.
I remember nights when I would lie awake in bed before I even hit the age of 10, crying my eyes out, praying to God to take my pain away. I often wouldn’t settle and fall to sleep until about 11:00 pm. This, as you can imagine, left me very tired in the mornings, and it became a mission for my parents to get me out of bed and to school. I was a kid, and I didn’t understand what was causing my pain and why.
Middle School Years
Skip forward to when I was about 11 years old. My pain had spread throughout my body, and I was no closer to getting answers as to why. After having coped with chronic pain for 3 years at that stage, I became burned out. Painsomnia was definitely a factor in this. I even started falling to sleep in class, despite the fact that I saw myself as a dedicated student.
As a result of my health, my parents enlisted me in a partial home-school program that was run by the public health service for children with health issues. This resulted in me only going to school 2 or 3 days a week. Before I reached high school, they slowly increased my hours at school again until I was back to attending school full time.
Around that age was when I finally received the closest thing to an answer I may ever get. One word; Fibromyalgia. This, along with CRPS (Complex Regional Pain Syndrome, which I was diagnosed with after an injury to my wrist that occurred when I was 13) is the source of my painsomnia.
Experiencing Painsomnia During Highschool and University
As I got older, my pain got worse and became more constant, until there wasn’t (and still isn’t) a moment of the day that I wasn’t in pain. Due to my increasing levels of pain, my painsomnia got worse. As a result of my painsomnia worsening, my level of chronic fatigue increased. And as a result of the increased fatigue, my pain got worse. It’s a vicious cycle.
It was during high school that I was introduced to some more of the symptoms that come along with painsomnia; I often found it difficult to concentrate during class and my memory suffered. This made studying for subjects such as the sciences and Calculus very difficult. Though I enjoyed these subjects, my grades weren’t all that high because absorbing the information was extremely difficult for me. I found that I did better in my more creative classes such as Photography, English, Graphic design, and Fabric technologies.
I fought my way through high school, and while at the beginning I constantly had sick days, by year 13 (my final year of high school) my attendance was above 90%. It wasn’t easy. Every day once I got home from school I was exhausted beyond belief. I could barely get out of bed for dinner. Luckily, my parents understood and weren’t too hard on me about my lack of extra-curricular activities. While at school I spent a lot of time in the nurse’s office, taking painkiller as prescribed every lunchtime and resting with a heat pack when the pain became too much.
Present Day
Skip forward to now. I’m 19 years old, and my sleeping patterns are tragic. I head to bed between 10-10: 30 pm. I then lie in bed, either reading or watching YouTube videos (with my phone on Night Mode) until I’m tired. Often, I may not become tired until 1:30-2: 00 am. To someone who does not experience painsomnia, this may seem like a very bad habit.
However, if you suffer from painsomnia. no matter how early you go to bed or how strict you are about avoiding stimuli before bed, you aren’t going to fall asleep until you’re so incredibly exhausted that the internal war between sleep and pain finally comes to an end for the night… At least, until your pain wakes you up again during the night and the cycle begins anew. For me, distracting myself from my pain until I become tired helps me to fall to sleep much faster than when I lie in complete darkness, having nothing but my pain to focus on.
If left uninterrupted, after a late night of experiencing painsomnia I can easily sleep in until 10.30-11.30am. However, life doesn’t always allow that. Not only do I attend University on average 3 days a week, I also have to do everyday tasks such as shopping and errands that mean I don’t get to sleep in as long as I may like to.
My worst nightmare is 8:00 am classes at Uni. I live 2 hours and 30mins away from my uni by public transport. Once you factor in a 30 min leeway in travel plans (in case of transport failure) and time to get ready in the morning, this can result in a 4:00 am wakeup. This can leave me absolutely exhausted for the rest of the day, which of course impacts my ability to absorb the information that is presented in class.
Regardless of whether I wake up early or sleep in, I still struggle with my concentration and memory. This makes studying at University a challenge, but I plan to fight my way through it, just like I did in high school.
Techniques I Use to Cope with Painsomnia:
While painsomnia can often be inescapable, I have formed some techniques over the last decade that help me cope with it. The first is microwaveable heat packs. These are little fabric cases that are often filled with wheat that you can stick in the microwave and put on your sore spots. The warmth from these heat packs can help reduce the pain, muscle stiffness, and muscle spasms that may be the cause of your painsomnia. Alternatively, if you find cold more therapeutic than heat, you could use ice packs.
The second thing that helps me cope with painsomnia is me taking a magnesium supplement at night, which was suggested by my doctor. Magnesium supplements support deep and refreshing sleep, can reduce stress, and can also help with restless leg syndrome. If you think magnesium supplements may be beneficial for you, check with your doctor or pharmacist to ensure they will not react with any other medications or treatments you may have.
Another technique I recently discovered that assists me falling to sleep faster is listening to ‘sleep music’ as I try to fall asleep. Listening to slow, soothing music before falling asleep can help you fall to sleep faster and wake up less during the night. When I first decided to give this a go, I searched “sleep music” on YouTube, and listened to a few different tracks until I found my favourite one. It runs for 3 hours, so it even runs after I’m asleep (unless I’m experiencing severe painsomnia).
The last, and probably the most obvious, coping technique is napping during the day. Napping isn’t just for young children. Napping, especially when you’re experiencing chronic fatigue, can increase your concentration, can improve your mood, and can reduce stress. If you’re having a busy day, and know you have to be at your best in the afternoon or the evening, a nap can leave you refreshed.
Dealing with painsomnia on top of your other chronic illness symptoms is exhausting. Especially so for a child. I’ve dealt with painsomnia for around a decade now, and though I haven’t yet gotten rid of it, I have discovered techniques that can help me, and that will hopefully help you, cope with it.
About The Author:
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
May 12th is Fibromyalgia Awareness Day. Fibromyalgia is a condition where the person feels widespread pain throughout the body, along with other symptoms such as Chronic Fatigue, Brain Fog and a host of others discussed below. Fibromyalgia is not an inflammatory condition but is thought to be a misconnect between the brain and it’s pain receptors.
The Sick Girl
When I was younger, I struggled with my health a lot and was known as “The Injured Girl” or “The Sick Girl”. I was always teased because I was sick and missed school a lot, even though I was able to keep up with my grades. I had teachers and coaches say I was just doing attention seeking behaviours and not truly in pain. I hated to do water activities because the water balloons or pump action water guns hurt so bad, the cold water would make it worse.
I started to lose some friends in junior high because they didn’t want to hang out with a “Debbie Downer”. This was the beginning of me trying to figure out that if what I was feeling was what everyone else experienced and I was just not handling the pain very well, or if I was experiencing pain that wasn’t supposed to be normal.
My first time of realizing that I was struggling with pain and my body not really working was when I was in PE in high school. My body was in constant pain and certain textures were bothering me. I had a doctor notice something with my back and that was the first time I had any validation from someone other than my parents that I was in pain.
The Diagnosis of Fibromyalgia
Two years and a half years after that my parents took me to a specialist in Salt Lake City to try to find out what all was going on with my body and see if there was anything that could be done. This was the first time that I had ever heard of fibromyalgia. I was also diagnosed with lupus and rheumatoid arthritis as well during that visit (I will tell my story about these two later, for now I want to focus on fibro). The doctor just told me what he was diagnosing me with and sent us on our merry way back home
I didn’t really think anything of my diagnosis and didn’t really think of what that meant at the time and what it could mean in the future. At the time, I was just glad to finally have a name or names to go along with my pain and that it wasn’t just all in my head. I had thought that it would have made my life a little easier and that people would stop calling me attention seeking, but unfortunately, that wasn’t the case. I still lost friends because I wasn’t getting better after my diagnosis. I had a few tell me that I was depressing because I would tell them what my body was feeling like and being honest with my limitations.
Symptoms
“Common symptoms include: widespread pain, jaw pain and stiffness, pain and tiredness in the face muscles and adjacent fibrous tissues, stiff joints and muscles in the morning, headaches, irregular sleep patterns, irritable bowel syndrome (IBS), painful menstrual periods, tingling and numbness in the hands and feet, restless leg syndrome (RLS), sensitivity to cold or heat, difficulties with memory and concentration known as ‘fibro-fog’, and fatigue. The following are also possible: problems with vision, nausea, pelvic and urinary problems, weight gain, dizziness, cold or flu-like symptoms, skin problems, chest symptoms, depression and anxiety, and breathing problems.”
This chronic illness is one that many doctors don’t agree that it is a chronic illness. My first specialist diagnosed me based on a lot of my symptoms and I was glad to have a diagnosis. I recently started seeing a new doctor because I had a flare and we decided to see what was flaring up to see if we could try and get it under control.
This is the first time I have ever had a doctor tell me that they do not believe that fibromyalgia is a diagnosis. He was honest in saying that he believes that fibromyalgia is just a doctor’s way of saying “I don’t really know what is wrong with you, but since your nerves are causing pain I will just call if fibromyalgia.”
In some ways, I agree with the doctor because some doctors just give a random diagnosis because they want to just not be asked to try and find what is wrong. In other ways, I disagree. I believe that it is a diagnosis, I believe that trauma or other chronic illnesses can trigger it, but I do not believe that it is not considered a chronic illness. Sometimes we, chronically ill patients, have to make a choice.
The Struggles
Some choices are whether to swap doctors to get the treatment and communication that we need/desire and other choices are whether we agree with the treatments we are given. I have decided it is in my best interest to stay with my new doctor because he wants to help me and keep open communication. I don’t agree with the diagnosis being “taken away” from me, but he is trying to treat the cause of the flare and not just give medications that are “band-aids” to mask the symptoms. For fibromyalgia awareness, I am bringing to light only some of the struggles that I am going through.
Conclusion
What I am experiencing is not what others are experiencing with the same diagnoses as I have. We also choose different treatments based on how our bodies respond to them and what our lives are like along with our own personal end goals. I am personally glad that my husband, doctor, support team, and I have agreed upon a treatment plan that will help me reach my own goal with my quality of life. I am glad that it will not take away my ability to write blogs, start video blogging, and work (as long as my body will allow).
It’s normal to feel a little nervous and stressed before a test. Just about everyone does. And a little nervous anticipation can actually help you do better on a test. But for some people, test anxiety is more intense. The nervousness they feel before a test can be so strong that it interferes with their concentration or performance.
Test anxiety is actually a type of performance anxiety — a feeling someone might have in a situation where performance really counts or when the pressure’s on to do well. Here’s how our Guest Author described the situation for herself.
The Challenge
A B C or D? I look down at the test and I freeze. I feel as if my mind’s going in 15 million directions as I look up and I hear the sound the clock: tick-tock! Time is running out. My body begins to sweat and my mind begins to shiver as I stare at the test thinking I have no mercy.
That’s the life of a college student with testing anxiety which has been a part of my life from the time I was in third grade. I believe that’s when my journey with testing anxiety began.
I was always an overachiever from a very age and I was always a child that loved school. I made it a point to make sure I received A’s and B’s (or sometimes a ”C” if it was in math) and I also made sure that I was on the honor roll and studied hard for all my tests.
Due to my Cerebral Palsy, I was placed in special education classes from kindergarten to about the 2nd grade. That’s when my special education teacher Mrs. A saw that I was ready for mainstream classes.
After that, an IEP meeting was held, which is an individual education plan for students with special needs that attend mainstream school. My parents and they decided it would be best for me to go into regular classes since I was able to handle most of the workload, just like any other student. I simply had to receive my work in moderation. For example, if the class had an assignment where they had to answer 25 questions, I would only have to answer 10 of them.
Writing The F.C.A.T.
I was fitting in well and had a great year overall but I was starting to become anxious about the upcoming F.C.A.T., which stands for Florida Comprehensive Assessment Test.
The F.C.A.T was mandatory for students that were in mainstream classes and throughout the year I had prepared for it as much as I could. I would take many practice tests to see how well I was doing and worked hard on my math and reading as well. I would also do the worksheets my teacher sent home so overall I was as ready as I could be.
When it came to the day of testing I was nervous and I didn’t have the right testing accommodations. It got a bit overwhelming for me and I wound up doing poorly on the F.C.A.T. which resulted in me being held back a year. So despite my good grades and being successful in mainstream classes, I still had to repeat a whole year which I felt was completely unfair. This lowered my self-esteem and made me think twice whether I was going to be able to be successful in school.
After that, whenever my teachers would mention a test I would freeze and sometimes even cry because I was in fear of constant failing. Finally, in 10th grade, I received the official diagnosis of ”Testing Anxiety “. I have dealt with the struggle since then, but even now (while in college) I think back to the time when I was the little 3rd grader who loved reading Flat Stanley and Captain Underpants and it makes me sad.
Getting Better
Now I’m an online college student but it’s not easy. At times I feel like my mind is glitched, especially when I have a panic attack and think back to that time in the 3rd grade. I just take a deep breath and remember to take my time. What I find helpful now when I’m tested is to put on some headphones and jam out to Blake Shelton music. It makes me forget about why I’m having a panic attack and it makes taking the test easier.
I hope that my experience helps others who suffer this way.
About The Author
Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.
