chronic pain Archives - The Unchargeables

July 11, 2020July 5, 2020

Why Does Our Culture React So Negatively to Disability Activism?

Disclaimer: This article is written from my perspective as a young, disabled adult that lives in New Zealand. Whenever I mention “culture” in this article I am referring to western culture, specifically western culture as adapted to by New Zealand. I haven’t done much traveling so I can’t say if other countries with similar cultures react the same way, however, I have seen accounts of similar experiences from activists worldwide.

This is also my experience as someone with an invisible disability. I’m sure that everyone’s experience is different, and some of the readers of this article may not relate to what I have written no matter where they live. This is awesome because we all have our own unique story. I make a lot of generalisations in this article, and those generalisations certainly don’t apply to everyone. I am just expressing my experience in the best way I can.

I have experienced widespread chronic pain since the age of seven. I went from being a relatively “normal” (if accident-prone) girl to experiencing severe pain every day of my life. Slowly my condition deteriorated until I required the use of walking aids for a large chunk of my life (and I still do). I went through years of bullying and what I can only consider being “medical abuse” (mistreatment from medical professionals; such as being called a faker and being forced to take medication that caused severe side effects), which almost broke me.

As I grew into my voice I decided that I would be an advocate; not only for myself but for everyone with similar experiences to mine. I started with the basics: social media. Whenever I noticed an injustice towards people with disabilities, whether it be against me directly or against someone else, I would speak out. I then started writing articles about my experiences, which I love. And now, I’m a part of a panel run by the local Ministry of Education aimed at making education more inclusive to disabled students. This is just the beginning of my advocacy journey, and I can’t wait to see where it leads me in the future.

Throughout my advocacy efforts, I have noticed that many people on social media bristle when advocates like me bring up serious issues addressing the disabled community. I have been dismissed, insulted, and verbally abused online by people who will do anything to defend injustices against vulnerable people. I decided recently that I wanted to analyse their viewpoint and understand why, so I thought the perfect way to do this would be to write out my analysis and my thoughts in article format so I can share it with you all. This article addresses the question featured in the title: Why does our culture react so negatively to disability activism?

Ableist preconceptions that exist culturally regarding disability:

When we take a deep look at how the topic of disabilities is covered in the media, it is actually quite shocking. For example, I have an issue with the tv show called “The Undateables”, which is a dating show about people with disabilities finding love. While I believe that disabled people (including myself) should have the opportunity to find love just like everyone else and appreciate the representation this show provides, I don’t support that show because of the title’s connotation and denotation. Using the term “undateable” to describe an entire group of people is downright insulting. You’d never see a media organisation calling someone who’s from any other minority group (but who is not disabled) “undateable”.

I am not “undateable”. My brothers are not “undateable”. My friends are not “undateable”. No person should be labelled “undateable” for something they can not control. This is just one example of society’s ingrained ableism that many people are blind to.

We’re to be pitied, but not listened to. This is another ableist preconception I’ve witnessed. Often disabled people are portrayed to be these pitied, helpless beings who need charity, not a voice. We must be passive to maintain this image otherwise we are labelled as “trolls” or “entitled”. I’ve been told that if I can walk and/or articulate then I’m not disabled enough to complain about facing injustices. That is so incredibly wrong, especially since if people like us who can speak up don’t, then who will?

Ableist preconceptions that exist culturally regarding disability

I’ve also been told that I should stop using my disability “as my personality” when I responded to a post on social media. Actually, I’ve been told this multiple times. That is one of the most ableist things I have heard to date. I’m sorry that I can’t “turn off” my disability. I experience pain every single second of my life. It impacts my ability to sleep, my ability to sit, my ability to stand, my ability to walk, my ability to work, my ability to study, and my ability to socialise. Am I supposed to forget that? Not only that, but why shouldn’t I fight for injustices against people with disabilities to end?

Invisible disabilities make people uncomfortable:

Many people feel like they have to see something to believe it, which is fine until you start talking about invisible illnesses and disabilities. If I’m not using my cane, you couldn’t tell I’m disabled just by looking at me. And yet, my disability impacts all aspects of my life, whether I’m using my cane or not. Many times I have had people accuse me of faking my disability on my activism posts, telling me that I don’t “look” disabled and that I’m just “lazy”. I’ve had to grow up listening to this from my peers throughout my childhood so it doesn’t bother me as much as it used to. I’ve become desensitised. However, this behaviour needs to be addressed, because next time it could be said to someone who is not experienced dealing with this kind of harassment.

The disability rights movement isn’t as “trendy” as other human rights movements:

This point may be a bit controversial, however, I think it’s important to talk about. As a disclaimer, I’m not trying to tear other movements down to lift up disability awareness, I am simply comparing current cultural awareness and coverage of different movements in the mainstream media. I am not trying to say that either of the movements I compare disability activism to below deserve less attention, because I believe they deserve all the coverage they are getting, if not more. I also believe that the disability awareness movement should have just as much coverage as these movements so that they’re all at an equal platform.

LGBTQIA+ pride, for example. We have pride parades and Pride Month, events dedicated to raising awareness about discrimination against people within the LGBTQIA+ community, and LGBTQIA+ merchandise specifically aimed at raising awareness and money for charities that support this goal, which is a great cause. Companies change their logos or advertising media to reflect these events to show their solidarity, which is amazing. There are even multiple public spaces in my country that have been painted rainbow to celebrate Pride, such as town squares and selected zebra crossings. Feminism is another example. We have the women’s march, international women’s day, feminist merchandise, and a tonne of events targeted at raising awareness about discrimination against women. Both of these movements are prominent in pop culture and get a large amount of media coverage, as they should.

The disability rights movement isn't as "trendy" as other human rights movements

I just wish we could see the same effort go into raising awareness about discrimination against people within the disability community, as well as a similar amount of media coverage of these efforts. Where are the disability awareness parades? In my country, there are none. There are disability awareness days, however, I have yet to see the mainstream media address them. The inequities of identity awareness in our culture is definitely an interesting topic to think about.

Disability activism is not “convenient”

Part of disability activism is confronting people who are taking advantage of disabled people just to make their own lives more convenient. For example, calling out people who park in disabled parks without a permit, or sharing public service announcements about misuse of disabled toilets. When I mention the misuse of disabled toilets, I don’t mean them being used by someone with an invisible disability. People with invisible disabilities have as much right to use the disabled toilet as every other disabled person. When I mention the misuse of disabled toilets I’m talking about the people who have no impairment what-so-ever (or aren’t assisting someone with an impairment) who just use the disabled toilet just because it’s there.

I have witnessed people without disability parking permits parking in disability parking many times. When called out on it, their response is often “I’ll just be a few minutes.” That is one of the most common responses, along with resorting to verbal abuse when someone mentions their lack of a permit. I have made posts about these occurrences on my town bulletin Facebook pages, and every single time I have received abuse from people who see no issue with parking in one of these parks without a permit. I get told that I’m entitled, even though I paid for my permit to use those parks, while the abusers that park there don’t. How am I entitled for asking to use a service that I pay for?

Privileged people who lack empathy don’t like having their privileges, even the privileges that aren’t rightfully theirs to begin with, taken away.

There’s also the issue of inaccessible public spaces or stores. Renovating an area to ensure it is accessible by everyone may not be cheap, but it is necessary. Calling out local businesses that exclude disabled people from their stores and spaces is extremely important.

Disability activism is not “convenient” especially when it addresses the misuse of disability parking and disability toilets

During my advocacy journey (despite it being a short one at this point, I only started about 4 years ago) I have faced a lot of feedback. Some of it good, some of it bad, most of it respectful. However, I have also faced a lot of abuse, mostly online, for standing up for what I believe in. Sometimes, for a brief moment, I consider giving up, but then I remember the people that have thanked me for speaking out. This article is dedicated to them. I long for a day when disability activism is no longer controversial, and people no longer have to fight for their voices to be heard.

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.

July 4, 2020July 2, 2020

Marie’s Chronic Illness Journey: Finding My “New Normal”

Marie’s Chronic Illness Journey: IBD and Crohn's disease

IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isolation.

No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.

Finding my “new normal”

Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.

I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.

I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.

Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.

Finding support

I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.

We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each other’s sentences, showed up for surgeries, and answered the phone late at night just because the other couldn’t sleep. We support each other in every aspect of our lives and I slowly began to realize the steps needed to be taken to get to my “new normal”.

It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.

Starting a blog when coping with IBD and Crohn's disease

I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.

People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.

About the Author:

Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.

December 7, 2019December 3, 2019

How to Keep Moving! (Chronic Illness and Exercise)

Though exercise is an important part of maintaining our health, exercising regularly is more difficult for people living with a chronic illness than it is for many others. However, with a doctor’s approval (of course), regular exercise can become manageable to some extent, while being highly beneficial for many aspects of people’s lives. For people with chronic illness, it can be even more crucial to regularly do some light physical activities, in order to increase their heart rate within safe parameters.

Some of the benefits of exercise for people with chronic illness include bone and muscle strengthening, weight control, improvement in mental health and mood, reduced chances of falls, as well as reducing the risk of heart disease, diabetes, and metabolic syndrome (as well as helping to manage the symptoms of these conditions). As a whole, regular exercise can help preserve your lifestyle.

How to get started:

If you’re a person suffering from some kind of chronic illness, then the topic of chronic illness and exercise is surely familiar to you. The first thing we ask ourselves is how to even begin exercising. The first thing you should do is speak to your doctor. This is very important, as they will give you the best advice that will match your medical condition and capabilities. Your doctor will advise you on how to start, what exercises are best, and what pace to keep.

How to get your exercise routine started when you experience chronic illness

Remember to ask about the exact benefits of taking up some physical activity, the safe exercises you can do, the ideal intensity and duration of these exercises, and the realistic goals that you can set; as well as learning what exercises are definitely off your list that may cause you harm. You can find the right level of activity for yourself and your unique chronic condition only when you have the answers to all the above considerations to act as a basis for your exercise plan.

Dealing with exercise related fear, grief, and trauma

Exercising with chronic illness can lead to experiencing a turmoil of emotions, including fear, grief, and trauma. Fear can be brought on by worrying about being judged by strangers while exercising, or being scared that we may not be able to keep up or do what we used to. There is also the fear of onset numbness, flares, and possible injury.

Grief can be experienced while exercising with chronic illness because we may not be as fast as we used to be, and the loss of functionality and stamina during our workout routines can be upsetting. We need to acknowledge that our bodies will look and work differently than they did before the onset of our chronic illness symptoms. Even knowing this may not stop us from feeling vulnerable as we see other people doing everything we once could but now can’t. We need to be aware that each person has a different level of activity they are capable of.

People diagnosed with chronic illness experience moments of acute trauma. This can mean that due to pain they feel, they simply disconnect their mind from their body in an attempt to ease the tremendous pain they feel. However, when exercising it’s impossible to disconnect our body from our mind. The sensations that accompany being physically active are discomforting, especially for people with a chronic illness – as they tend to associate the pain from exercise with the pain associated with their illness.

Dealing with fear, grief, and trauma when exercising with chronic illness

These are some reasons many people with chronic illness avoid exercise. We can help ourselves overcome these by thinking encouraging thoughts and assuring ourselves that we are not in danger. The more we are able to deal with these emotions, the stronger and more capable we will become. This kind of practice will make us stronger – both physically and mentally.

Start off slow

It’s important to start off slow. Choose some light, mild activities as you begin your exercise plan. These activities could include taking a short walk, gentle stretching, riding a bike leisurely, or lifting light weights. If you’re a fan of walking, take some walks in nature: go to the park or the countryside. If you prefer cycling, find a perfect bike that fits your personality and needs and cycle leisurely around your neighborhood. Any kind of physical movement, even though it might not seem much to you, is better than no movement at all.

Choose activities you like

Usually, in life, we persist and continue doing what we enjoy doing. That’s why it’s key to choose the activities we enjoy because in that way we’ll have something that ties us to the activity. Another way to persist in doing physical activities is to find an exercise buddy. That helps you stay motivated and accountable. Everything we do with our friends is easier and more bearable, as we can give each other support during hard times.

Frequency is more important than duration

This means that you should focus on moving a little every day rather than doing something for two hours once a week. You should try to make the activities a part of your day. Even things such as using the stairs, sweeping and even standing up and sitting down on a chair repetitively are also considered to be light physical activities.

Set realistic goals

It’s necessary to be realistic in setting our goals. We should start with simple and easily doable ones such as some yard work and little housework, for those people who don’t suffer from severe chronic conditions. On the other hand, people who suffer from more severe forms of illnesses should maybe start with improving their flexibility in order to start managing some usual daily activities. Setting unrealistic goals can lead to disappointment and lack of motivation.

Don’t give up

Even if sometimes you can’t keep up with a regular activity once or twice in a certain period, don’t let that bother you. Take a break if you need to, but remember to go back to exercising as soon as you can. Go over in your mind what you’ve achieved so far and think about what you can achieve in the future if you keep up the good work.

Motivation is important

Everybody has a different motivation for making themselves go through something that is extremely difficult for them, such as exercise. Some people want to be in better physical shape in order to keep up with their toddler, while other people want to improve their mood, their quality of life, and their overall health – the reasons are countless. When you have a reason strong enough, you’ll find more time and energy to endure. It’s especially important to remember your motivation on the days you don’t feel like exercising. Motivation is a very powerful tool and it can help you achieve almost anything.

Remember: Your excercise plan can be adapted to suit you

If there is an exercise that you loved but are no longer able to do, it may be able to be adapted to suit your needs. This means you don’t need to stop doing what you enjoy. For example, yoga can be practiced from a chair and you can receive all the same benefits of improved flexibility, increased strength and reduced stress

You can adapt your exercise plan to suit you (chronic illness and exercise)

Try attending a class

Attending a fitness class has the benefit of being able to consult an instructor, who can help you do the exercises correctly and avoid any mistakes that could lead to an injury. If you worry that a “normal” fitness class may be too hard on you, you may be able to find a special class for people with disabilities or chronic illnesses. This means you also get to spend time with people who may have a similar condition as you, allowing you to share your experiences and maybe even hear a few good pieces of advice.

Learning how to live a to-some-extent-normal life when suffering from a chronic illness is not an easy task. With lots of effort, motivation, will, and support from our dear loved ones, we can try to improve as much as we can and be the best version of ourselves.

For more information regarding exercising with chronic illness, you can visit: www.gethealthystayhealthy.com

About the author:

Helen Bradford is a journalism student who always seeks new ideas to write about. She enjoys blogging about beauty, health and style trends for women. When she’s not writing, she spends her spare time being active through fitness and traveling.

September 30, 2019September 29, 2019

My Life in Words: (Ashley’s Spoonie Story)

Ashley's Spoonie Story: Ashley's Chronic Pain Journey

According to the Merriam-Webster dictionary, the word “chronic” is defined as: continuing or occurring again and again for a long time, always present or encountered. The word “pain” is simply defined as: mild to severe discomfort and suffering. If you combine the two definitions of the words “chronic” and “pain”, we reach a sole statement that describes the life of those whose “normal” has become something most people cannot comprehend: mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, and is always present and encountered.

Chronic Pain is Life Changing

As is the case with a lot of chronic pain warriors, my life didn’t start out this way. There was once a time when my life didn’t involve seeing my doctors more often than my friends; when pharmacy visits didn’t happen every other day; when I didn’t have to end up in the ER on a Wednesday night, curled tightly into the fetal position; when I didn’t spend my nights tossing and turning because of the insomnia; when I didn’t have to open a medication bottle multiple times a day.

There was a time when when I didn’t have to research for hours on end just to understand what happens beneath my own skin; when I didn’t have to sit and rest after a shower; when I didn’t have to try to explain things about my body to other people that even I don’t understand fully; and a time when I wasn’t intimately familiar with the definition of “chronic pain” as a result of life has become every minute of every day.

The Life Changing Consequences of Chronic Pain

Everything changed on of March 21st, 2011. It happened in the blink of an eye. It was a Monday, a bright and sunny afternoon, when an overthrown softball collided with the back of my skull as I was leaving our school’s softball field. I don’t remember much of that incident, except for three distinct things: my coach’s voice close by which was ricocheting around me like a bouncy ball; the cracking sound of the softball hitting my skull resounding in my ears like an echo in a cave; And lastly, the pain. The pain is what I remember the most, and rightly so, as it hasn’t stopped in 8 years, 5 months, and 25 days.

My Chronic Pain Journey

Throughout these years, months, and days, it has been a perplexing, debilitating, yet rewarding and valuable journey. There have been countless moments where I can’t even seem to even hold myself up anymore, falling to the floor and weeping for the soul that’s exhausted and depleted, and wondering if this is a life worth even living. I watched the doctor that I had trusted for 4 years look me in the eye and confidently tell me “I don’t believe you’re in that much pain.” I had turned to her to help me find answers to my never-ending questions and search for treatments that would help give me just a small glimpse of blissful relief, and this is what she said to me. She didn’t see the way I collapsed in the hallway; she didn’t hear my sobs outside of her pretentiously white-walled office; she didn’t see my family pick me up off the ground, all the while telling me repeatedly “we believe you.”

Living chronically ill isn’t for the weak, it has more hard moments that you would ever be able to imagine. However, there are also some moments that have made this journey that I’ve been living worth it in the end. For example, it has taught me how self-love is one of the most important things in life. One morning, as I stared into the full-length mirror that I attached to the back of my university dorm door, all I could see was a shadow of someone I once knew, someone I couldn’t even recognize. Staring at my reflection with my roommates laughing on the other side of the door, I said to my reflection, “I am going to love you one day, give me some time.” I realized that just because our bodies feel like a prison, that doesn’t mean we should treat them that way. And sometime later, before I even knew it, I stared at that same reflection and saw something else. I saw someone who adored their body, even if it malfunctioned.

The Importance of Maintaining Self Love on Your Chronic Pain Journey

Living life with chronic pain, a mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, always present and encountered, might be hard for others to understand, but it’s an understood normal for us chronic pain warriors. We wake up every morning to endure another day, with a strength we didn’t know was possible. But it’s so important to love yourself, despite the reality your body puts you through. I loved myself as I walked across my university stage and received my college diploma; and I also loved myself as I sat in the ER in excruciating pain on a Tuesday night. Your body deserves the love you have to give, too.

September 28, 2019September 28, 2019

The Realities of Living with Chiari Malformations (Chiari Awareness Month)

September is Chiari (pronounced kee-AH-ree) Malformation awareness month. Chiari Malformations are structural abnormalities of the cerebellum, the part of your brain that controls muscular movements such as coordination, posture, balance, and speech; as well as the spinal cord. Chiari Awareness Month aims to raise awareness about the chronic symptoms those with the conditions often experience. One commonly experienced symptom by those with Chiari Malformation is chronic, debilitating head and neck pain.

Chiari Malformation is not very common, however, it is being diagnosed at a higher rate than previously due to the increasing use of modern imaging diagnostic tests. According to WebMD, Chiari Malformations are more likely to affect females than males. Due to some people never developing symptoms as a result of this condition, it is impossible to estimate exactly how many people have Chiari Malformation.

Symptoms of Chiari Malformation

Some people with Chiari Malformations experience no symptoms, however, others may experience chronic symptoms including:

Weakness in muscles
Vison issues
Hearing problems (including tinnitus)
Vomiting
Headaches
Neck pain
Dizziness
Difficulty swallowing or speaking
Balance and coordination issues
Numbness

One commonly experienced symptom by those with Chiari Malformation is chronic, debilitating head and neck pain.

The symptoms can vary based on the type and severity of the Chiari Malformation.

Types of Chiari Malformation

There are four types of Chiari Malformations:

Type I is the most common type found in children. This occurs when the cerebellum extends into the foramen magnum, which is the opening at the base of the skull. Normally only the spinal cord passes through this opening. Type I is the only type of Chiari Malformation that can be acquired after birth, however, it is also possible to be born with this type of Chiari Malformation. Type I can be acquired through injury, infection, or harmful substances, due to the resulting excessive draining of spinal fluid. However, this isn’t as common as congenital Type I Chiari Malformation, which occurs during fetal development. The causes of congenital Type I Chiari Malformations are not yet fully understood.

Type II is normally only seen in children with spina bifida. Type II is known as the “classic” Chiari Malformation. Type II Chiari Malformation occurs when both the cerebellum and the brain stem extend into the foramen magnum. This is often diagnosed during pregnancy through ultrasounds, though it can also be diagnosed after birth in early infancy.

Type III is the most serious type of Chiari Malformation, as it has a higher mortality rate. Type III is also a rare type. Type III Chiari Malformation occurs when some of the cerebellum and the brain stem stick out through an abnormal opening at the back of the skull. This type of Chiari Malformation can cause life-threatening complications, as well as possible neurological issues. Seizures can also occur with this type of Chiari Malformation.

Type IV occurs when the cerebellum is either underdeveloped or incomplete. Parts of the skull and spinal cord may also be visible. This is another rare form of Chiari Malformation.

Conditions associated with Chiari Malformations

Hydrocephalus is an excessive build-up of cerebrospinal fluid (CFS) in the brain. This can be caused by a Chiari Malformation blocking the normal flow of this fluid. This can cause pressure within the head that can lead to defects, including an enlarged or misshapen skull. If left untreated, this can become fatal. Hydrocephalus can occur with any type of Chiari Malformation, but most commonly occurs with Type II.

Spina bifida is the incomplete closing of the bone and membranes surrounding the spinal cord. As said above, people with Chiari Malformation Type II usually have spina bifida.

Syringomyelia is when a cyst forms in the spinal cord’s central canal. This can cause pain, stiffness, and weakness in the neck, shoulders, back, and limbs.

Tethered cord syndrome occurs when the spinal cord abnormally attaches itself to the tissue at the bottom of the spine. This condition is progressive, as it gets worse as the child grows. This condition can result in the damage to nerves that control the muscles in the lower body and legs.

Spinal curvature is common in people who have syringomyelia or Chiari Malformation Type I. If the spine bends either to the left or right, this is called scoliosis. If the spine bends forward, this is called kyphosis.

Diagnostic tests and treatment

In the process of diagnosing Chiari Malformation, a doctor may order an MRI, CT scan, or X-ray. An MRI is the test that is used to diagnose Chiari Malformation most often. The doctor will also check things such as your motor skills, balance, and response to touch. This is because all of these functions are controlled by the spinal cord and the cerebellum.

If the Chiari Malformations cause no symptoms, then treatment may not be necessary. However, if pain is caused by this condition, it can be treated with pain medication. Surgery may be required to fix any functional abnormalities and prevent any progressive damage to the central nervous system.

Spreading Awareness

Whether it be during September or throughout the rest of the year, organisations such as Conquer Chiari encourage people impacted by Chiari Malformation to spread awareness however they can. Whether it be through something as simple as sharing awareness posts on Facebook, or through something a bit more complicated like wearing clothing and jewellery mentioning Chiari, hosting a fundraiser, or participating in annual Chiari Awareness Month events such as the Conquer Chiari Walk.

Like with any other chronic illness, the spread of awareness and information regarding Chiari Malformations is incredibly important. Not only does this encourage understanding towards those who experience Chiari Malformations from those who don’t, but it also opens the doors towards new research regarding the causes and treatments of Chiari Malformation.

If you’re wanting to learn more about Chiari Malformations and the lives of those who experience it, you can visit websites such as the Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010) and Conquer Chiari (https://www.conquerchiari.org/index.html).

About The Author

September 9, 2019August 31, 2019

The implications of Having a Sitting Disability While in Public (My Personal Experience)

The term 'sitting disability' is unfortunately not well known or recognised. I myself didn't know this term until early this year, despite me having had trouble sitting for over 12 years. Issues with sitting are often an invisible disability, which can mean it's easily overlooked by people who don't experience it. Sitting disabilities can have many causes, mine is the result of pain in my lower back and hips caused by Fibromyalgia and muscle tightening in my back.

A sitting disability occurs when someone finds it difficult to sit or is unable to sit entirely. This is usually due to experiencing pain. You don’t have to have any other chronic issues or disabilities to experience a sitting disability, however, many people can experience both chronic illness and sitting disabilities simultaneously. The term ‘sitting disability’ is unfortunately not well known or recognized. I myself didn’t know this term until early this year, despite me having had trouble sitting for over 12 years. Issues with sitting are often an invisible disability, which can mean it’s easily overlooked by people who don’t experience it. Sitting disabilities can have many causes, mine is the result of pain in my lower back and hips caused by Fibromyalgia and muscle tightening in my back.

Whether I'm sitting on the couch, traveling on public transport, going to the movies, or sitting in class; I have to be mindful of how my body is positioned and how I can minimize my pain levels, otherwise my back could end up being in serious, constant pain for the rest of the day and I can end up very exhausted.

I do not consider my sitting disability to be on the severe end of the scale by any means, yet it impacts every second of my life. Whether I’m sitting on the couch, traveling on public transport, going to the movies, or sitting in class; I have to be mindful of how my body is positioned and how I can minimize my pain levels, otherwise my back could end up being in serious, constant pain for the rest of the day and I can end up very exhausted.

Mobility Issues Are Not Cancelled Out By Sitting Disabilities

Things become even more complicated when you have a sitting disability as well as issues standing and walking. It can be difficult having to explain to people why you have difficulty both sitting and standing for long periods of time, and how one isn’t the solution to the other. For example, I was discussing future career options with someone I knew. They knew I had mobility issues, so they suggested I become a truck driver. They said this was the solution to my problems because I would be sitting for hours on end and wouldn’t have to get up and move around often. As I explained that I couldn’t sit for long periods of time either, this person became more and more perplexed. Likewise, a job where I’m walking around a lot and barely sit wouldn’t work for me either. I’d have to find a way to balance the two and minimize my pain levels as much as possible.

Experiencing a Sitting Disability Throughout Childhood

When I attended primary school, we used to have to sit on a wooden floor in the gym for assemblies. This would cause me a lot of pain in my lower back and hips as well as numbness in my legs, so I started sitting with a cushion between me and the floor instead of directly on the hard floor between the ages of 9 and 12. This made sitting on the floor a bit more bearable but didn’t take away the discomfort. Sitting on a cushion when other students did not made me different, which as you can imagine left me open to teasing and bullying from my peers. Even once I entered high school and no longer had to worry about sitting on the floor as often, students who attended the same primary school as me would point at me and say things like “that’s the girl who sat on a cushion” with a malicious undertone.

Road trips were also (and still are) very difficult for me. Along with family holidays, there were also school trips and sports camps. While my family quickly learned how to make road trips easier for me (and therefore the family as a whole) by doing things such as taking breaks more often and letting me have the seat with the most room, school, and sports trips were a lot less flexible since there were other kids and adults to worry about. For these situations, I made sure to have a pillow/cushion on me for lower back support and my pain meds in an accessible place.

Public Transport

For people with severe sitting disability, public transport such as trains, busses, and planes can be practically inaccessible.

I travel two and a half hours each direction by public transport to attend university across the city. As you can imagine this is not ideal for someone with a sitting disability. In order to get through the trips with as little pain as possible, I try to sit on the right side of the bus or train so I can lean against the wall for support. Then if the seat next to me is free I tuck my right foot up under my left thigh on the seat, which can take up a bit of the seat next to me. This is the position that causes me the least amount of pain. I try to be as mindful of the people around me as possible, so if the train or bus is full I’ll sit normally, despite the near agony it causes me. Despite the fact that I need to sit in this position in order to be able to get through the day, I often receive dirty looks, and sometimes the train managers will tell me to get my foot down. Whenever this occurs, I comply with the train manager because it seems like that will take less effort than trying to explain my situation to them. However, whenever I do sit in a “normal” position for any length of time, I end up in a lot of pain and become shaky and tired. It doesn’t go away once I stand up, either. So, I can end up feeling like that for the rest of the day.

I’ve found the only time I haven’t received any ridicule for sitting with a leg on the seat is when I had an ankle injury and had a moon boot on. The moon boot acted as a visible symbol that I was having trouble sitting in a specific position, whereas without it people assume there is no issue, which couldn’t be further from the truth.

At University

After traveling for two and a half hours, 90% of which is spent sitting, my back is often already stiff, sensitive, sore, or all three. Sitting in classes that are over an hour can be very difficult, especially if the chair is uncomfortable and has limited lower back support. This can also be an issue during exams. However, I’m very lucky to have the support of my university’s Disability Services, who do their best to provide me with supportive chairs in lectures and exams. These supportive chairs allow me to sit longer with less pain, however, do not take away the pain and exhaustion completely.

One of my favorite spaces at university is a room in the library which has bean bags. If I arrive at university early or am waiting between lectures, I enjoy sitting on bean bags because I can just sprawl there without having to support myself, which keeps the pain and exhaustion at bay.

Dealing with a sitting disability on its own is hard enough, however, it can become even more difficult when you have to deal with chronic illness on top of it. Sitting disabilities can make everyday activities become difficult and can make tasks that are supposed to be simple to become extremely tedious. While disability activism has and is making great strides in our society, there isn’t much awareness surrounding sitting disabilities, though I’m sure many people experience it in one form or another.

I’ve read a lot of horror stories about the way people with sitting disabilities have been treated in public and it hurts my heart. I’m lucky enough to not have experienced anything serious. Yet, I hope the spreading of awareness around sitting disabilities will prevent such conflicts happening in the future.

September 7, 2019September 5, 2019

How You Can Decide Which Yoga Style Works Best For You: (Comprehensive List)

How to Decide Which Yoga Poses Work Best For You

Yoga is a disciplinary practice that helps us to reshape our unconscious patterns. It disciplines us by reducing the fluctuations of our mind and keeps our mind in harmony with our body. Practicing yoga helps us to build a framework to make conscious choices with clarity, mental peace, and happiness. This unparalleled form of wisdom is the ingredient we need to become spiritually aware and to enlighten our souls.

Yoga and it’s benefits

Practicing yoga mainly consists of Asanas (different body postures), and Meditation Pranayama (meditation while controlling your breathing), making it an efficient way to uplift our physical and mental health. Yoga asanas can improve our physiology by increasing our flexibility, strength, mobility, and balance. Yoga is a great tool to improve one’s physical stature and posture. The physical postures in Yoga allow our body to go through a full range of motion, reducing pain and tension in the muscles.

Modern Yoga has been divided into different forms, each with its own distinctive style and health benefits. It might be a difficult task to choose the one that resonates with us, but we can make an informed decision after evaluating all the styles available.

Styles of yoga:

Hatha Yoga:

This ancient style of Yoga is very common and focuses on asanas and pranayama. The asanas include twisting, reclining, standing and balancing of the body. This form of Yoga is highly practiced in Yoga teacher training in India.

What to expect: The Yoga asanas can be physically challenging and are usually slow and calm.

You should try this if: You need a grounded and pure form of Yoga with standing and sitting poses. It is also great for those who wish to develop awareness through pranayamas.

Benefits: Reduces muscular pain and de-stresses the body.

Making an informed decision about which form of yoga works for you

Viniyoga:

This is a branch of Hatha Yoga that focuses on breathing and meditation with poses. It helps in creating an inward flow of energy.

What to expect: Focus on breathing, meditation, and chanting.

You should try this if: You have limited mobility and wish to work from the inside out.

Benefits: Improved posture, body awareness, and relaxation.

Ashtanga Yoga:

This advanced form of Yoga has a series of poses that require quick transitions from one pose to another. This challenging form of Yoga is also regarded as ‘power yoga.’ Surya Namaskar is a popular form of Ashtanga Yoga with 12 asanas.

What to expect: Keen concentration on breathing while following a set of sequential poses.

You should try this if: You need a physically demanding session with fast-paced movements and acrobatic postures.

Benefits: Strengthened muscles, increased flexibility, and improved stamina.

Bikram Yoga:

This yoga form includes practicing basic asanas with breathing techniques for 90 minutes in a pre-heated room (40 degrees Celsius).

What to expect: Similar asanas as in Hatha Yoga.

You should try this if: You prefer a repetitive routine, extreme exertion and are okay with heat.

Benefits: Removal of toxins, as well as improved circulation of blood and oxygen.

Iyenger Yoga:

This form of Yoga works so that the body and mind can function in equilibrium. It has strict poses which focus on posture and proper alignment. The good breathwork helps you to hold poses for a longer time.

What to expect: Using Yoga props for standing and seated postures with good breathing techniques.

You should try this if: You want to work on correcting your posture and alignment.

Benefits: Increases range of motion, muscle tone and reduces anxiety.

Using yoga as an exercise when dealing with chronic illness

Vinyasa Yoga:

This is a dynamic and flowing form of yoga. It includes quick transitions with a rhythmic background. This is a cardiovascular exercise and is very popular in the US.

What to expect: Freeform and a dynamic exercise usually guided by an instructor.

You should try this if: You want an athletic kind of feeling with minimum restrictions in forms.

Benefits: Reduces body fat, increases flexibility and builds lean muscle.

Jivamukti Yoga:

This is a Vinyasa based style that includes chanting, meditation, and listening to the spiritual and ancient teachings of Yoga. This form of Yoga is good for the mind and helps widen our intellect.

What to expect: Sequences of meditation, deep listening, and chanting.

You should try this if: You want to experience the spiritual and ancient teachings of Yoga and its philosophies.

Benefits: Body awareness, widened mind and wisdom.

Kundalini Yoga:

This yoga form balances the energies of the body through mindful activities like meditation, chanting mantras, and pranayamas. It directs the flow of energy from the bottom of our spine to the seven chakras that revive the soul.

What to expect: Chanting mantra, deep meditation, and repeated movements.

You should try this if: You’re looking to deepen your spiritual practice.

Benefits: Deep spiritual awakening, corrects our energy channels, and you can feel the energy at the base of the spine.

Yin Yoga:

This is a slow-paced form of yoga where the positions are usually held for a longer period of time. The asanas are usually performed in a seated or lying position. The longer duration of each position releases tension in muscles by giving them a uniform level of stress.

What to expect: A slow style of yoga where poses are held from 1-5 minutes.

You should try this if: You deal with chronic muscular pain, stress or stiffness.

Benefits: Repairs connective tissues, releases tension and stress, and revives the range of motion of the muscles.

Using yoga for restorative and relaxing purposes when dealing with chronic illness

Restorative Yoga:

This form of Yoga is best suited for the purpose of resting and relaxation. This involves only five or six poses with minimum movement and passive stretching. Props are also used for better support and balance.

What to expect: Gentle and slow poses that are to be held for more than 10 minutes using props.

You should try this if: You’re suffering from chronic pain and stress.

Benefits: Stimulates the nervous system by aligning physical and mental aspects by practicing still movements.

Though all the yoga styles have different benefits to offer, Yoga has a consistent theme of synchronizing the body and mind so that people can reach their highest potential.

About The Author

Bipin Baloni is a passionate Yogi, Yoga Teacher and a Traveller in India. He organizes 200 hours of yoga teacher training in various cities in India and Nepal. He also conducts AyurvedaCourses in Kerala He loves writing and reading books related to yoga, health, nature, Himalayas and Trekking in Nepal .

August 26, 2019August 26, 2019

No Pain, No Gain. A Harmful Statement (To Those Who Suffer From Chronic Pain)

The term “no pain, no gain” was mostly used by personal trainers to encourage their customers to endure the pain of exercise in order to get fitter, which I understand, but it’s also used as an inspirational phrase that tells people they must go through hardship to reach happier times. The phrase being used in this context is what bothers me. Inspirational speakers used to come to my high school and say things along the lines of “no pain, no gain”, or “whatever you’re going through, it will get better,” and every time they did, I wanted to throw something at their heads. I know they meant well, however, hearing this phrase makes me feel… Inadequate. Like, if pain equals gain, what do I have to show for it? The main issue in my life since the age of 7 has been chronic pain, and I doubt it will get better any time soon; if anything, it’s getting worse.

Sure, I’m pretty happy with the progress I’ve made in the past year, having started a business degree at university and having moved out of my parent’s house. However, it feels like if the equation pain=gain is supposed to be correct, the amount of pain I experience on a daily basis far outweighs the gains I have made (pain>gain). How can something I experience every second of every day be dismissed as a bridge to a happier life? I may be seen as extremely sensitive for writing this article, however, I’m not the only person with chronic illness who doesn’t like this phrase.

Pushing Myself Too Far

Not only do I dislike the subtle connotations towards pain within this phrase, I dislike that it also tries to teach us that we have to push ourselves to our limit in order to gain anything of values . As I’m sure you know, pushing yourself to your limit, especially when you have a chronic illness, can be extremely dangerous. My physiotherapist used to tell me off for pushing myself too hard; I was sacrificing my health and my quality of life because I thought I had to push myself to the edge in order to get anywhere. I would “boom and bust”, exercising day after day until I could barely move after, having to rest and recover for a few days to a week because I was too sick to function and then doing it all over again. Sure, I was losing some weight and was active, but at what cost? It was a toxic cycle. My pain levels were constantly high… well, higher than my normal high levels, and my capacity to function mentally suffered along with my physical ability.

Now, I’m doing better. I’m coping with school, however, I don’t exercise as much as I would like. By doing one, I have to sacrifice the other. Otherwise, I’m sacrificing my ability to function at all. It’s a fragile balance that many people with chronic illness have to maintain.

What I have lost

As the result of chronic pain, I have lost so much. I lost the second half of my childhood. I have lost my quality of life, my enjoyment of physical activity, and my independence. Every day is a struggle. I struggle to get out of bed, I struggle to get ready, I struggle to do housework. I had to give up studying the degree that would lead to my dream career because I couldn’t cope with full-time study.

There are days when I feel so incredibly useless. I can’t remember what being pain-free feels like. The pain is always there, reminding me of what I lost and what I can still lose. It feels like, as someone with a chronic illness, I have to work five times as hard as someone who doesn’t have a chronic illness or a disability to achieve the same result. And that hurts.

There Have Been Some Gains

In order to disperse some of the negativity in this article, I thought I’d discuss some of the gains I have made during my chronic pain journey. One is that I am far less judgemental of other people than I used to be. Growing up with an invisible illness has taught me that I am in no place to judge other people by their appearances, when by looking at me, you wouldn’t be able to tell the magnitude of my suffering. I know what it’s like to have your physical ability accessed purely based on your appearance by strangers, and I wouldn’t want to do that to anyone when I know how upsetting it is.

Every time I fall, I get up again. Even if I need to have a little cry before I manage it.

Growing up with a chronic illness has definitely made me a stronger person. Chronic pain sufferers have to be extremely resilient in order to carry on with life. I put up with extreme amounts of pain on a daily basis, just to get things done, just like my fellow chronic illness warriors do. Every time I fall, I get up again. Even if I need to have a little cry before I manage it.

Learning Who My Real Friends Are

One benefit of having a chronic illness that I didn’t see coming is that you find out who your real friends and family’s are. Whether you’ve known them since before you became ill or met them along the way, the people who really care for you will do their best to be understanding of what you go through. It can be incredibly tough when family members are indifferent or doubtful towards your suffering. They’re your family and they’re supposed to love you unconditionally, but this isn’t always the case. I try to interact with people like this as little as possible.

I have gained and then lost some really toxic people from my life over the years. Having to cope with a chronic illness is one of the biggest tests a friendship can have. If they’re truly understanding and empathetic, then their friendship will last through thick and thin. Some people like to be friends during the good times and then leave when life gets rough. Fine, that’s their decision, but I won’t waste effort on people who don’t care enough to spend the same amount of effort on our friendship. My closest friends are the ones who have stuck with me for years, since the beginning of high school. I was already dealing with chronic pain, however, they were accepting of me and have been nothing but supportive since we met, despite the fact that my condition has done nothing but get worse.

My chronic pain journey has not been smooth. Not even close. I don’t like that pain is seen as this ultimate goal when people like me suffer from it every day. Chronic pain can be extremely debilitating, however, it seems to be hard to understand if you’ve never experienced it. The idea that pain is means to an end is, in my opinion, very harmful towards people’s attitudes with regards to chronic pain.

About The Author

July 13, 2019June 28, 2019

Comments That Are Hurtful to Recieve When You Live with Chronic Illness

I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.

1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”

Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.

2. “Oh, I’m tired too, I know exactly how you feel.”

Ah, Chronic Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that you could sleep for 16 hours and still wake up exhausted. You have to rest after having a shower or bath because you’re shaking so badly from the exertion. Chronic Fatigue is like swimming in concrete, every movement takes enormous amounts of energy and the simplest tasks like brushing your hair or washing your hands take effort and concentration.

Being told "I'm tired too" when you experience chronic fatigue.

Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!

3. “Have you tried (fill in the blank)?”

I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.

When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.

4. “Well, you don’t look that sick.”

This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.

Not looking sick when I apply makeup, as someone with chronic illness.

5. “When are you going to get better? You’re always in poor health.”

Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.

When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.

Maintain hope for those you know with chronic illness.

I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.

July 8, 2019June 24, 2019

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Tips and Tricks for Studying With a Chronic Illness

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.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

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.