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.

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

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. 

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.

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.

The Impossibility of ‘Get Well Soon’ – Vaive’s Spoonie Story

One of the hardest things about living with chronic illness(es) is that it’s exactly that: chronic. You know it’s never going to go away, and while you may have periods of time where you feel slightly better, eventually it gets worse again. There is no break, no pause button, let alone a cure. Sometimes those things that help can be exhausting and equally painful, such as surgeries and therapies. It consumes your entire life, and it can be difficult to learn how to not let it take over your life. 

Everything Changes

Around ten years ago, my diagnoses started to roll in – although my symptoms had been coming and going for much longer. A brief summary of some of my conditions – and sadly, I will most likely forget a few – include: 

  • Fibromyalgia
  • Bronchiectasis 
  • Chronic migraines 
  • Long QT Syndrome, SVT (Supraventricular Tachycardia), Incomplete RBBB (Right Bundle Branch Block) 
  • Functional GI Disorders and a stomach hiatus hernia
  • Cervical spondylosis, protruding discs, scoliosis
  • Hypermobility and a grade 2 ATFL (anterior tibiofibular ligament) sprain/tear

Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). His idea is that diagnosis wise, I have them, but it is my body and only I can determine how accurately these encompass my symptoms. 

Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic

Someone like myself who has multiple diagnoses that require a lot of specific treatment and care is referred to as a person with ‘complex care/health needs’. This makes life a little harder, as my doctors don’t really communicate much with each other and I end up having to point out that I can’t have certain medications or do certain things because of other conditions. While I have gotten used to it, it can be difficult when I’m particularly struggling with one thing and am tempted to just go ‘oh well I’ll risk the heart attack and take these just to be in less pain’! 

Dancing Through Life 

When I was younger I loved performing. In fact, I still do – my dog frequently enjoys my performances of various songs from musicals I love when I have the house to myself. Up until I was sixteen I did a lot of dancing, and it dominated a lot of my time, which I loved. I like to be kept busy! I also did a lot of acting and singing and playing the piano. The ATFL sprain, which was initially thought to be a simple, minor sprain, put a stopper to that (along with the beginnings of regular palpitations and arrhythmia). 

When I initially stopped dancing, I truly believed that in a couple of years time I’d get back to my normal self and start dancing again. I was also having a lot of regular back pain, which doctors always brushed off. Who doesn’t have back pain these days? When I was at drama school, the pain just wouldn’t go away and I always seemed to be unwell. Eventually, this ended with me in hospital for a week, using a Zimmer frame to slowly get around, and I quit drama school (I didn’t feel too bothered by this) and my job working on the London 2012 Olympics ceremonies. 

In September 2013 I went to University. While there, although I continued to be in constant pain, had at least one million chest infections (alright, one million is a mild exaggeration), and a minor surgery, I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle, respectively. I’m really happy that I managed to do them, because I absolutely love musicals and they made me so happy! I also did a lot of yoga at university, and I’m so glad I did that while my body was still capable. 

I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle,

The Winner Takes It All

After leaving university I lost a lot of who I was, but I forced myself to keep being that person. I worked full time at a restaurant for a year, where I had been part-timing for two years while I studied. I went on tour for three months. I worked for a catering agency for a few months, taking every shift possible without regard to the fact that all humans need a day off sometimes. I forced myself into shoes that hurt my feet, to carry plates with hands that had lost all sensation and pick up crates of drinks with searing sciatica. I toured guests through famous sets with a grin on my face, spewing knowledge through the brain fog. 

That year taught me so much, and although I did have a lot of fun and have so many fond memories – I wouldn’t put myself through it ever again. My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health. Perhaps I was in denial about how bad my health really was, hiding it under the smiles and appearance of an able body? I could carry the heavy things and walk all those stairs and work fifteen hour shifts – by sheer force. 

My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health

Who benefited from all of that? Certainly not me. Sure, I earned decent money and got to go on great holidays and buy nice things. But ultimately, that didn’t help me. Having money didn’t make me less ill. It helped with purchasing things that I need, but I barely had the time to use them since I was always at work. Bubble baths were my savior. I somehow managed to go on dates, meeting for lunch or dinner before I had to go to work, applying eyeliner to distract from my tired eyes. Obviously, that fizzled out after a few months. I no longer had the energy to go for lunch or meet up or do anything except get home and sleep until I had to work again. People were always telling me ‘I’m sure you’ll feel a bit better when you’ve got some rest’ – but I neither believed them nor had the time to rest. I knew my body didn’t have a ‘get well’ mode anymore, so I didn’t stop. 

Until I went to my parents for the Christmas holidays and actually had consecutive days off. I was exhausted. I knew then that something had to change. I could not continue forcing my body into these extremes, and wasting time that should be spent with family and friends desperately trying to recover from the pain by myself. I suddenly realised I was losing far, far more than I was attempting to gain. 

Me and the Sky 

In January 2018, I started to work at a special needs college through an agency, having wanted to do something different. I had worked with children and young adults with disabilities for around four years by then, so I was really happy to be in this setting. Although I had spent my entire life vowing never to teach, I quickly started to enjoy doing this job. I have worked in three different classes, and have been the teacher for all three at this stage – something I never thought I’d do! While the job is definitely stressful and exhausting, getting to push the boundaries of what society limits young people with learning difficulties and disabilities into is incredible. 

Teaching and supporting young adults who have had barriers constantly put in place opened my eyes up about my own way of living with chronic health conditions and disabilities. When I take these students to their work placements, or see them achieve something they couldn’t do a year ago, I realise I need to have that level of advocacy and encouragement for myself. If I am telling people to use their mobility aids, or finding adaptive equipment so they can make themselves a drink or a sandwich, why have I been ignoring the fact that I ought to be doing this too? I have this knowledge and ability to teach people how to do useful life things, yet I am not doing these same things for myself. 

It’s strange being able to work but not being able to do things like wash my own hair on a regular basis. I suppose I put all my energy into doing my job, and every so often I’ve got the energy to make myself dinner after work – although more often than not, I end up putting something in the oven while I shower. Usually with chips as a side, or pasta on a better day. But mostly, I am grateful for the change to, for a few hours a day, box up my own problems and focus on doing my job – because the job certainly requires a lot of my attention. Of course, I need breaks and I need the occasional time out for a migraine, or I wear slippers all day because my feet are too sore for shoes. I am aware that one day, maybe sooner than I’d like, I will not be able to do this job. This is only something I have recently accepted, and am working on being okay with. For all I know, that could be this year – or it could be twenty years from now. 

Being able to work with complex care needs is (aside from a blessing and an extra load of stress) almost like being able to ‘do it all’ – and yet it’s far from it. If my colleagues are exhausted, stressed and in pain, what does that make me? Yet I’m fortunate to have good support at work – aside from having on site nurses for the students and a safe place for my medication, we have an Occupational Health nurse who helps with risk assessments and work adjustments/advice to management so that I can do my job safely and effectively. Without this, it’s unlikely I’d be doing this job. 

Mama, I’m A Big Girl Now 

We can all agree that twenty six is definitely an adult age – although I, along with most of my friends, still nervously laugh at the idea of being an adult. Responsibilities? Doing things? Earning money? Saving money? What on earth was wrong with just going to school for a few hours a day with your friends and then doing the fun things with some pocket money you maybe had to wash the dishes to earn? Either way, it’s an adult age, whether I like it or not. 

I spend a lot of time at my parents’ house – despite the rent I pay for my own apartment (although at the time of writing I don’t have my own place thanks to a horrible experience with awful property management and a collapsed ceiling). Sometimes this is by choice because I do like to see my parents and my dog. Especially my dog! Her name is Holly and she is the most loving staffie you will ever meet. Anyway, I spend a lot of time at my parents’ house, but not necessarily by choice. 

I spend a lot of time at my parents' house - despite the rent I pay for my own apartment

Going to my parents’ house, while a long drive from work, means there is dinner for me at the end of the day where I’d be too tired to make it myself. It means somebody can wash my hair, and pick up prescriptions when I’m too exhausted to do it myself. I spent about two months recently commuting after leaving my apartment, and it was both exhausting and a blessing. I would not do it again though. 

Like most mothers, mine is very protective, especially what with me being so unwell. Every so often she tries to sway me to just stay here where I can be looked after, and I think this is something many with chronic illnesses face. I know some people do move back to their parents because they cannot handle living alone with the state of their health – and have the same push of benefits and drawbacks. Nobody really wants to still be living with their parents in their twenties, no matter how much you love them. Despite being unwell, we do have our own lives and like to do things our way. My agreement is that I’ll get help, such as hiring a cleaner and see if I can get somebody to assist me with things like washing my hair, and do online grocery shopping rather than drag myself around a store. I hate that I can’t do these things for myself, but it’s important to accept that in order to live independently I will need support with some aspects – and that’s okay. 

Who Lives, Who Dies, Who Tells Your Story

I am so incredibly fortunate for my support system. From that perspective, I really lucked out. My family, friends and colleagues are understanding, supportive and excellent advocates. Whether it’s making me a cup of tea or taking me to a hospital appointment, or accepting that meeting up will involve me lying on the floor with a hot water bottle, they have never once complained or questioned things. Even at Christmas, when my family all flew in and I spent most of my time in bed because I was so unwell and couldn’t do anything on Christmas Day. 

My little circle of close friends have known me for twelve years now, so they’ve really been on the whole journey with me. I still do things I love when I can, and having a wheelchair has definitely helped with that recently. It meant I could go to the beach with them, where they wanted to walk around the lanes and I knew I’d struggle. It also means when I have a low energy day, I don’t waste it on forcing myself to walk around somewhere and then paying for it big time later. It’s life-changing. But they also know I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing. 

I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing.

I only recently became more open about my health with everyone – probably only the last two years did I start to talk about it properly. Interestingly, people always end up coming to me and saying that their friend or colleague has something similar and give me a suggestion (certain massages or things like CBD oil) or say they were able to advise someone else with something I had told them. My mom even discusses me with her patients! Even though I don’t know these people personally, it gives me a further sense of extended community support. I’m not alone in this. 

‘Get well soon’ may be an impossibility, and that’s not the easiest concept – no matter how often we say that it’s fine. Part of me will always miss the ‘old me’ who could do everything that I no longer can – but I also love the ‘new me’ who perseveres through every single day and discovers more things that I am capable of. Turns out, I love to crochet (except when it dislocates my fingers) and I still love to sing and play the piano when I can. I love that I have friends who enjoy meeting up for a cup of tea, or drive over an hour to my apartment for takeaway and movie night. My best friend came all the way down from Manchester and all we did was sit on my parents sofa watching many episodes of Friends and a meal out. You guys are the best friends this broken little blonde could ask for. 

The online chronic illness community is also incredible – I recently posted a story about my ovarian cysts, which I knew little about as the doctor didn’t explain them, and suddenly everything was so much clearer. I felt less alone, less like I was in my own corner of impossible pain. I love being part of the Unchargeables team, sharing my journey on Instagram and getting to talk to fellow warriors every day! 

Being unwell has almost consumed my life, but I will continue to resist it taking over every aspect of it. Whether it’s the occasional beach walk, dislocated fingers from making pies, or doing my job with an ice pack tied to my head – Vai is still here. Sure, I’m not getting any better – and I will have days where I feel ready to give up. I have days where all I can do is lie in bed doing nothing because I’ve lost all motivation. But the time comes around where I draw on my eyebrows, put on my big hoop earrings, and continue to fight. Sharing my story has helped me come to terms with many things and a sounding ground for new and old problems. 

About The Author

Vai is Lithuanian who has lived in England since the age of 2. She has a love of theatre and performance (she danced semi-professionally in her teens) and has a degree in Drama. She discovered her passion is in teaching SEN college students and supporting young people with disabilities. Vai has been diagnosed with several different chronic conditions and thinks it’s important to share her experiences of living with chronic illnesses to support others going through the same thing.

Finding The Good In Life – Stacey’s Spoonie Story.

Hello, my name is Stacey Moisant and I am chronically ill. My story began about 35 years ago when I was diagnosed with Diabetes Type I. I was sent to a hospital locally and for 2 weeks. I was taught how to take insulin multiple times per day and how to eat by measuring out my food; back then it was a ½ cup of this, 4 ounces of this, a small handful of that. I have since learned how to carb count and have been on an insulin pump for almost 20 years.

Diagnosis After Diagnosis

Then around 13 years of age, I began falling and having issues with both of my knees swelling terribly and being very painful. After four surgeries I was diagnosed with a “rare” form of Rheumatoid arthritis. I call it “rare” because it doesn’t show up in any of my blood work it only shows up in the fluid surrounding my knees. After multiple physicians telling me nothing was wrong or I no longer had rheumatoid arthritis I finally found a doctor who ran a test called Vectra DS which shows how severe my condition was.  The results came back zero to 29 is low severity, 30-44 is moderate and 45 to 100 is high; mine came back as 52. My joints had already began to disfigure so my new physician started me on Humira. My hopes are that my joints stop moving and my pain decreases.

In the midst of trying to find a doctor to believe me about the rheumatoid arthritis, I started having severe abdominal swelling, I couldn’t eat without throwing up and in a great deal of pain. I was diagnosed with Gastroparesis. On top of being Diabetic, I had to learn what I could and couldn’t eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited … do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes it’s no.

I had to learn what I could and couldn’t eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited … do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes it’s no.

A few years went by with no new symptoms, no new diagnoses, just living day to day. I woke up and my husband and I decided to go to the grocery store and I had a twinge of pain in my right back but really didn’t think much about it until half way through our shopping trip I doubled over in pain. We rushed home, I just wanted to lie down for a little while and see if it would subside. By this time my pain tolerance was very high and what use to by a 10 was now about a 6, so I lay down and about ten minutes later I rushed to the bathroom thinking I had to urinate and nothing, just more pain. I got my husband and he rushed me to the hospital to find out I had papillary necrosis in my right kidney. After about 15 surgeries to fix this, I am happy to report I have no further issues with my kidneys. They are hanging in there for the long haul.

At this time, I am now around 37 years old and I believe that my gastroparesis is acting up and I go to see my doctor after being in the ER due to vomiting and nausea etc. He took a CT scan and decides he needs to do a procedure to go in and look at my stomach and pancreas, the procedure is called an ERCP (endoscopic retrograde cholangiopancreatography). After my first ERCP I was diagnosed with a Sphincter of Oddi dysfunction and had to have a stent placed to keep that area from swelling shut. Then, I had to have another and another and another. One of the side effects of this procedure is pancreatitis and after the second procedure I again doubled over with pain and was rushed to the ER to find out I indeed had pancreatitis. Now you talk about pain but until you have experienced pancreatitis you have no idea what pain is. I thought I was dying. Due to the pancreatitis I have had multiple ERCP’s, 3 GJ tube placements, multiple hospitalizations and countless doctor visits. My GI doctor and I feel like family. He is an amazing man who has kept me alive for 11 years now.

Keep Living, Keep Moving & Finding Joy

I worked in the medical field for years; working at our local children’s hospital helping children to realize that yes they are sick and uniquely different, nevertheless you keep moving, keep living, keep finding joy in life and “if there is a will there is a way”. I have since been deemed disabled but I still make it one of my missions that with all of the above diagnoses and along with multiple others like hidradenitis, cellulitis, Morton’s neuroma, dyshidrotic eczema, GERD, fibromyalgia, high cholesterol, thyroid disorder, obstructive and central sleep apnea, obsessive compulsive disorder, depression and anxiety to name a few I can still get out of bed and live a productive life taking care of myself and my family.

truly believes that because I am chronically ill doesn’t mean I can’t find good things in life

I am now 46 year old and truly believes that because I am chronically ill doesn’t mean I can’t find good things in life. I keep myself busy with crafts and pen addictions and taking care of my ailing parents. I try to do everything with a smile on my face and love in my heart. I have one child in which we adopted at the age of 3 now going on 20 years old. She is my greatest achievement in life. I never thought I would have children or be able to raise I child due to all of the pain that I go through on a daily basis but with God’s help and direction I keep moving forward.

Check out Stacey’s instagram to follow her chronic illness journey.

To The People Who Think I’m Not “Independent” Enough (I’m Trying My Hardest).

Amy-Clements-To-the-People-Who-Think-Im-Not-Independent-Enough

As a young adult with chronic illness, I have received a lot of snide comments from people about their perception of my lack of independence. I also find that I receive snide looks when I let it slip that I require help with things that other people may not.

Amy-Clements-To-the-People-Who-Think-Im-Not-Independent-Enough

These snide comments or looks can come from anyone; whether it be family, people close to me, medical professionals, or even complete strangers. Independence can be difficult to retain and maintain when you have a chronic illness, and it doesn’t help when people point out that they think it’s lacking, especially if your independence is one of your insecurities 

Unsolicited Outside Opinions.

I recently saw a post online saying that the only way to help someone with chronic pain is to NOT help them at all. Apparently, if you do things for someone with chronic pain, they aren’t going to want to learn to do those things for themselves.

As someone with Fibromyalgia, I find this assessment extremely flawed. Sure, it may be accurate for those recovering from an injury or surgery, however, it is certainly not accurate for those with chronic illness. For many people with chronic illness, there is no recovery.

Sure, symptoms may become better managed, however, they may never go away. So, refusing to offer someone help when they do need it just because they may not need it in the future seems pretty illogical to me.

This isn’t the first time I have encountered people with this kind of thinking in my chronic illness journey. When I was about 13, my mother was told by an intern psychologist that the reason I didn’t do things around the house that ‘normal’ kids would do, such as packing their own lunch every single night or fetching dinner from the kitchen, was because I simply didn’t want to.

My mother was told that I didn’t struggle to move, I just had behavioural issues and lack of motivation. This obviously wasn’t true. My parents didn’t listen to this person, however, because they saw the slow progression of my condition. They saw the nights I laid curled up in a ball, whimpering or crying in pain, unable to move.

They saw how I became more and more dependent on my crutches (I’ve now switched to a walking cane) because I was in too much pain to bear my own body weight. I’m so glad my parents did what they knew to be right for me, as it was only with their help that I was able to make it through high school without becoming more overcome with fatigue than I already was.

Moving Out of Home.

Moving out of my parent’s home was a massive step for me when it came to gaining more independence. It felt good because I was doing something completely for myself. I searched for flats, I wrote up budgets and did everything else that came with planning to move.

It all seemed to be coming together perfectly. It was during the first few weeks of moving that I received my first reality check. Moving my stuff from my parent’s place was both time consuming and extremely exhausting. I needed a lot of help and my pain levels skyrocketed, both from the physical task of moving as well as the stress.

Once I was finally settled, I realised I was drowning in all the housework. I was pushing myself to my limit and not really getting anywhere. It wasn’t long before I realised that no matter how hard I tried or wished it was so, moving out of home didn’t make me require help any less.

It really struck me one night when I was lying in bed, having a pain flare, wishing I had the energy to get up and get my medication. I was far too sore to move, and I didn’t have anyone to ask to for help like I would have at home. I felt extremely lonely, and I cried myself to sleep that night.

Relying on My Mother for Care.

Despite the fact that my mobility is hindered due to my chronic pain, I do not fit the criteria for a caregiver. I was refused carer hours when I applied for it after my 18th birthday, and again after I moved out, despite the fact I had received carer hours prior to my 18th birthday.

They apparently don’t provide help to people over 18 who don’t have a diagnosis that is on their checklist, no matter what the person’s physical ability is. At one stage I was even told: “well if you were diagnosed with [insert diagnosis with similar symptoms to mine] we’d be able to help you.” 

As a result of this, despite me not living at home, my mother drives me around, does my washing, and helps me tidy my room. I feel bad for needing her help because she has two boys to look after, both of which have autism as well as one of them having a Chromosome Deletion.

However, I have no choice. I am in a place where I simply can’t do these things for myself. Believe me, I’ve tried. Just this morning I started tidying my room before my mother arrived to help hang up clothes, and by the time I was finished, I was shaking with exhaustion.

I could barely hold myself up in a sitting position, despite the fact that all I had been doing very little activity. My mother is honestly my hero. I wouldn’t be able to function without her.

Not long after my application for carer hours was denied after moving out, I was talking to someone about how I had been refused help and how I was frustrated. When I tried to explain my situation, they replied: “well, maybe it’s because they want you to be independent.” I was shocked.

This implied that I was choosing to be dependent and that I could just switch my dependence off. I was torn between wanting to laugh and wanting to cry. 

I would be fully independent if I could.

People with chronic illness don’t ask for help ‘just because’. They ask because they need it. This idea that the chronically ill should be left to do everything for themselves is extremely harmful.

Sure, there are the people who have chronic illnesses who are fully independent, and I respect them for it. However, not everyone can manage that. One thing that I don’t think people that haven’t experienced chronic illness (first or even second hand) understand is that if I could do these things for myself, I would.

I’d have my driver’s license, I’d be living in a student apartment on my own all the way across the city, and I’d be studying full-time, doing the course I dreamed about throughout high school that I had to give up due to my health. 

The one message I want to convey in this article is that my dependence is not a choice. It’s me doing the most that I can.

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.

Breastfeeding and Chronic Illness (My Personal Experience)

My Experience Breastfeeding with Chronic Illness

During this period of spreading breastfeeding awareness, I want to share how breastfeeding while experiencing chronic illness has affected me; I guess you could say I’m not the average mom. Depending on who I asked, I was told that breastfeeding was either easy or difficult. When I gave birth to my first daughter on the 20th of June 2017, I thought I’d take to breastfeeding with ease since I had watched a ton of videos and attended breastfeeding classes. This, however, was not the case.

After my daughter R was born, I struggled with getting her to latch on and instantly felt like a failure. I decided to consult a lactation consultant to come in because I did not want to give up. When she came in, we had to discuss what was going on. We discussed that R was a “lazy baby” and sucked on her wrist throughout my whole pregnancy.  We had to used SNS (supplemental nursing system) and a nipple shield to convince her to latch. I cried many times throughout my stay because I had to use the SNS twice with the nipple shield and some formula just on me to get her to taste it another time. I remember feeling bone tired while R was nursing for hours at a time in the hospital, with the nurses coming in and badgering me to feed her more often.  During those times it had felt like I had just finished nursing her, yet they would come in and tell me I wasn’t nursing her often enough.

My Experience Adjusting to Breastfeeding

During the first month at home, I was glad it was my summer break and that I did not have to stress about going back to work.  I cried many times during the day and night because my fibromyalgia was flaring up and it hurt for R to be nursing for long periods of time.  I struggled mentally at this time because of my PPD/A and I was struggling to build a relationship with my daughter. I never have experienced such pure and utter exhaustion like I did with struggling to breastfeed, experiencing a loss of sleep, and my chronic illnesses flaring up.  I wanted to give up many times, and hearing some others just tell me to use bottles so that they could feed R didn’t help with my mental state. I also had people tell me not to breastfeed in public and to isolate myself whenever I needed to feed her. I found it was hard to carry her when I needed to walk with my service dog and just trying to find a place to nurse without people tripping on the dog or walking on me was difficult.  

The Exhaustion of Adjusting to Breastfeeding with Chronic Illness

My husband has been a huge support, along with my parents, for both our girls because they will take my girls and let me sleep in in the morning. In the newborn stage (0-3 months) my girls woke up often to feed, but it happened around the same time throughout the night.  No longer experiencing this interruption of sleep predictability helped me to cope and not be as grumpy or frustrated with my sleep being interrupted.  

The Stigma that Surrounds Breastfeeding

Breastfeeding can be difficult for anyone, not just people with chronic illnesses.  There is a stigma with breastfeeding that goes around along with a lot of misinformation. Unfortunately, there is a huge push for anyone who is breastfeeding to go and nurse in another room, bathroom, changing room, etc…  There seems to be a huge push for formula and bottle feeding because it’s “more convenient” and allows others to feed the baby to “give mom a break”. There are even suggestions to just pump and bottle feed, but that is not an easier option because every time that the baby feeds, mom still needs to get up and pump, then take care of the pump parts and put the milk in storage.  There’s a lot of work no matter what, and it can be a struggle. 

Medication and Breastfeeding

Having chronic illnesses and making the choice to breastfeed will limit your options concerning medication.  Even though you are not pregnant, you still have some limitations or weird changes of limitations on medication.  After having my second daughter W, my body went into a flare with lupus and fibromyalgia. I discussed with my doctor what we could do, and he put me on a new medication that would not affect my daughter since I am still breastfeeding.   I had to go back to my doctor this past week because the medication was working, but not at a therapeutic level.

Medication and Breastfeeding When You Have Chronic Illness

He decided to up my medication again by 0.5mg (small increases as needed because everybody is different) and then discussed that I am still inflamed in my ears but the fluid in my inner ears was finally gone.  We had initially wanted to put me on gabapentin, however, after my doctor went and looked up to see if it would be safe, he and I decided that we could not take the risk. The medication I was put on instead was one that claimed a minimal amount goes through the milk to the baby. We would have to monitor W as well as myself to make sure no harm or side effects were occurring. 

It is a “safe” medication, but in the “if the benefits outweigh the risks” manner. I was slightly devastated because my pain is coming to a point where I am losing more sleep than I already was to begin with. Pain can also affect your libido, patience level, etc… We have now gotten to where we need to focus on herbs if possible, to help with my nerves since most medications for pain are not recommended for long periods of time while breastfeeding.  If my pain gets worse or even more unmanageable then we will revisit and evaluate what we need to do as our next step.

For now, I am going to stick with breastfeeding because it is beneficial to my daughter. My daughters both do not respond very well to formula and I would have to special order one from out of the country, which my insurance will not cover. When I consider the cost, benefit and time (easier/quicker to breastfeed than prepare a bottle), I am keeping everything in mind and staying in contact with my doctor to make sure I am not sacrificing too much of my physical, mental, emotional, and spiritual health.  My experience is going to be different from anyone else’s experience, and I am always a “fed is best” advocate. I will never advise someone to compromise their own health when their child needs their parents alive more than anything.

Is Using My Cane A Mockery Of Old People?

A letter to the Elderly Lady who called my cane usage "a mockery of old people"

Coming to terms with the fact that I needed to use a walking cane was initially very difficult for me. After all, I wasn’t old, and the stigma around walking canes is that they are only for the use of the elderly. I was 16 years old and barely able to walk half the time. The pain of Fibromyalgia consumed every minute of my life (it still does), and I was barely getting out of the house besides going to school.

A letter to the Elderly Lady who called my cane usage "a mockery of old people"

The Reasons For My Cane

I didn’t even have the energy to grocery shop, which is something I had always enjoyed helping my mother with. At that stage, I had been coping with widespread chronic pain for about 9 years. I was struggling my way through high school, and I didn’t know if there was any hope for my future, since the pain has done nothing but get worse. My quality of life and self-esteem was almost nil. 

Getting a walking cane changed that completely. I was able to gain back some of the independence that I had when my pain was less severe. I’m now 19 and attending University part-time. I know for sure that without using a walking cane, I wouldn’t be able to cope with the commute to and from campus (believe me, I’ve tried).

My main fear when it came to using a walking cane was that people would judge me, and I’m not going to lie; they did. They still do. Despite what has been said to me, I continued to use my walking cane whenever I decided that I needed it, which was at least half of the time. As I continued to use it, I become more and more confident about it.

Is Using My Cane A Mockery Of Old People?

Now when I use my walking cane as a 19-year-old, I barely think about it unless someone mentions it to me. It’s a part of me, and I need it in order to be able to function in a semi-normal way. Medical professionals I have seen have approved of me using it, and nothing anyone says will change that.

In this article, I’m going to outline some of the instances where people have voiced their judgements about me using a walking cane, and why I think these judgements are flawed.

Being Accused Of Mocking The Elderly

My mother went to an appointment one morning recently, and in the waiting room a conversation started up between my mother and an elderly lady. My mother is a friendly person, so she enjoys talking to people whether she knows them or not.

At some stage during the conversation, the lady started talking about how there’s a young lady using a walking cane around our town, and how this elderly lady and her friends agree that this young woman is making a mockery of old people.

Is Using My Cane A Mockery Of Old People?

My town is not very big, and everyone knows someone who knows someone. I can confidently say that I’m the only young adult, let alone young lady, in my town who uses a walking cane (that I have seen). My mother had obviously come to the same conclusion because she told this lady that she knew the young woman who used a walking cane.

She told the lady that this young woman was using it for her diagnosed medical condition that she had since childhood, and that she wasn’t mocking anyone. The next day, my mother told me about what this lady had said about me. I was shocked. 

This is the event that inspired me to write this article. I was always planning to write about my experiences using a walking cane as a teenager, however, this gave me both the push and the context I needed.

I didn’t realise that me using a cane as a teenager would bother anyone. I unknowingly, and by no fault of my own, had become a subject of town gossip. And despite me not wanting it to, it hurt me. It hurt me that someone would think such a terrible thing of me when I would never mock anyone for anything that is out of their control.

I would understand if it were children, or even very young adults were the ones being cruel. Having a lack of life experience can result in ignorance. What I don’t understand, however, is grown adults of thirty years or older being so incredibly petty and judgemental.

I can’t wrap my head around it. Having people say these types of things about you can be so incredibly damaging to the self-esteem of someone who is already struggling with chronic illness.

Saying things like this could push someone over the edge, it’s that serious. This isn’t the first, and probably won’t be the last, time that my use of a walking cane has been criticised. 

“Is That [Cane] Really Necessary?”

The first time I walked into my high school’s nurse’s office with my walking cane, I was nervous about the reaction I would get. Looking back, I was right to be nervous. When the nurse on duty that day saw me using the cane, she looked me up and down, scoffed, and said in an amused tone “is that really necessary?”

“Is That [Cane] Really Necessary?"

My friend was with me and heard this too, and I was mortified. I then informed her that my Chronic Pain Team physiotherapist had approved me using a cane instead of crutches and then asked for my medication, holding back tears. Once my mother heard about what had been said, she called the nurse and explained my situation.

While the nurse never made another comment about my cane again, I didn’t feel comfortable around her from then on and I avoided her as much as possible for my final years before my graduation. 

“You Aren’t [Old]”

A month or so ago, I was riding in an elevator at the local train station with an elderly man who also had a walking cane. He was looking me up and down, which is normal for me around older people.

He asked me “why are you using a walking cane? You aren’t my age.” I smiled at him, a bit taken aback, and politely replied “I have a chronic pain condition. It can make it difficult to walk.” I kept it simple, I didn’t want to go into details. He then replied “well I’m old. I’m allowed to use one.” The doors opened just as he finished his sentence, and I exited the elevator thinking about what he had said.

Was he trying to say that only old people were allowed to use walking canes? I didn’t let what he said upset me, I just carried on with my day as usual and kind of pushed it out of my mind. The memory then resurfaced when I was thinking about what was said about me to my mother.

I Won’t Apologise For Using A Walking Cane.

I don’t understand what people have to gain from being so judgemental. It baffles me that someone can have such disdain towards someone they haven’t met or barely know.

Having an invisible disability or illness means that besides any tools or walking aids that are used (such as a wheelchair, a walking frame, or a walking cane), there is no way to tell what I, or any other person with chronic illness, goes through. 

Is Using My Cane A Mockery Of Old People?

I don’t use a walking cane for fun or because I think it’s cool. I use it because I genuinely need it for support when I’m in a lot of pain. I don’t enjoy being a teenager who uses a enjoy walking cane. I don’t the looks of curiosity or disdain I often get from other adults.

However, I will continue to use it because I wouldn’t get through the day without it. I won’t apologise for using a walking aid, no matter what anyone thinks of it. 

Having had a chronic illness since childhood has made my skin extremely thick. It has made me far less mindful of what those who aren’t my close friends, immediate family, or doctors have to say about my health.

Of course, what people say about me does still bother me, otherwise, I wouldn’t be writing this article. However, it doesn’t affect me as much as it used to. I don’t break down and cry when I hear what people say about me, as I would have a few years ago.

My aim with writing my experiences in this article is to spread awareness about young people worldwide who use walking canes due to their health. They do exist, and they certainly aren’t trying to mock anyone. They’re just trying to live their lives, like everyone else. 

Please, if you ever feel tempted to negatively comment on a young person’s use of a walking aid, please don’t. And if you are a young person who uses a walking aid who faces judgement, know that you are not alone.

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.

What I Wish the Public Knew About My Chronic Illness

What I Wish the Public Knew About My Chronic Illness

I once spent eight months out of the year in the hospital. As the months passed and my emaciated frame sunk further into the gurney, I was denied the basic luxuries like a homecooked meal (if I could eat) or sleeping alongside the purring of my precious kitten. I struggled to make the best of it. It was during my eight-month hospital admission that I created the blog Hospital Princess, along with its affiliated YouTube channel and Instagram. What started as a way to update friends and family about my situation morphed into an outlet for me to spread awareness.

My Diagnosis

What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17th birthday was celebrated with flushed cheeks, itching skin, and my heart pounding like a subwoofer in my chest. While I had been sick prior to that, I was suddenly unable to go anywhere or do anything without rebounding allergic reactions. My world as I knew it was irrevocably altered upon receiving the diagnosis of Mast Cell Activation Syndrome.

Mast cells are allergy cells within the immune system. The role of a mast cell is to protect the body against pathogens. My mast cells take the task of eliminating pathogens a little too seriously. I began experiencing life-threatening reactions triggered by all foods and food proteins in the air, perfumes, cologne, lotions, detergents, hormonal fluctuations, strong emotions, hot or cold temperatures…you name it. My family could not even cook in the house without putting me in danger. They had to convert the garage into a kitchen in order to prepare and eat their meals.

What I Wish the Public Knew About My Mast Cell Activation Treatment

The traditional treatments for Mast Cell Activation Syndrome failed. As a result, I was hospitalized in order to begin the last resort option known as the continuous diphenhydramine infusion. Diphenhydramine is simply the fancy term for Benadryl, and I had (and still have) it infusing into my central line every second of every day in order to control the severity of my reactions. Since I had been reacting to my feeding tube formula and IV nutrition, the Benadryl pump allowed me to tolerate some nutrition at the very least.

We assume that my case of Mast Cell Activation Syndrome is secondary to the genetic connective tissue disorder Ehlers Danlos Syndrome (EDS). EDS has also caused a myriad of other maladies: Dysautonomia/POTS, Chronic Intestinal Pseudo-Obstruction, Gastroparesis, and more. My doctors and I continue to search for answers because if we can pinpoint the root cause or contributing factors and treat them, perhaps my mast cells will improve.

The Reality of My Stay in Hospital

Consider the various stressors of the hospital. I am sure you can recall the physical and emotional burdens whenever you or a loved one is admitted for medical care. You know, the restlessness, the incessant beeping of IV pumps, and the early morning awakenings just to repeat the same story you already told umpteen times before. Patients and families contend with all of the above while healing from illness—fighting to get better, for the chance to improve, to overcome, to love, to live. This was my life for nearly a year.

Being chronically ill, I spent my leisure hours in the confines of my four-bedroom walls. I was always a bit stir crazy, craving a change of scenery. But when I was finally discharged after a gruesome eight months, I celebrated the victory of returning to the place I once complained about so often. The nurses cheered as I exited the oncology ward.

What I Wish the Public Knew About the Reality of My Stay in Hospital

Unfortunately, I couldn’t leave the hospital behind in the same way that the majority of hospital patients do. I left garbed in a filtered mask with a nasal cannula hidden underneath. On the handles of my custom wheelchair hung a backpack containing four pumps that infused medications through the central line in my chest, and formula into the tube on my abdomen that leads directly into my small intestine. At that moment, I found that my true self became lost within the tubes and lines protruding from every orifice of my body.

However, I knew that I had the power to eventually find myself again.

The Judgement I Receive from Healthy Outsiders

Now, I can’t step a foot outside my house without receiving the questioning looks of pity. People undoubtedly feel sorry for me. They see my wheelchair, the tubes, the miscellaneous lines protruding from every orifice of my body, and their eyes drop in sullen despair. I know what they are thinking because their gaze reveals their innermost thoughts. Instead of seeing a successful young woman with ceaseless opportunities ahead of her, they assume the opposite—that my disability renders me an invalid, incapable of participating in what life has to offer. To them, a life with limitations is not worth living. On the rare chance that conversation does ensue, they are surprised to learn I am in college and soon-to-be married; as if someone with health challenges cannot accrue accomplishments in school, careers, and relationships.

Picture of the Author with Her Treatment Tubes

The stigma of disability constructs this pattern of erroneous misconceptions. Interactions with total strangers provoke the insecurities of the girl I was when I was leaving the hospital four years ago—the one who struggled to recognize she was more than her illness. As those feelings resurface, I am reduced to an object made up of medical equipment, devoid of emotions, in which they direct their sympathy. It never crosses their mind that I am a real human being.

My goal as a Chronic Illness Advocate is to prove that having a chronic illness does not diminish a person. Depending on continuous infusions, a feeding tube, and various other medical interventions for survival, is not easy, yet it is possible to live a fulfilling life despite chronic illness—even when your daily routine starts to resemble a never-ending hospital admission.

About The Author

Cheyanne is a 22-year old college student hoping to pursue a career as a counselor in chronic and terminal illness. In her spare time, she runs a small Etsy business and writes about psychology and neuroscience for CogniFit. Although Ehlers Danlos Syndrome and its comorbid diagnoses, Mast Cell Disease, Dysautonomia, and Chronic Intestinal Pseudo-Obstruction present its challenges, she strives to prove that life with chronic illness is still worth living through her blog and its affiliated YouTube channel at hospitalprincess.com.

The Side Effects Of Having Fun When You Have A Chronic Illness

I guess you could say that I have the interests of an average 19-year-old girl. I like to read, watch makeup tutorials, and binge watch series on Netflix. I also enjoy hanging out with friends and socialising, when I have the energy to. Having struggled with the chronic pain of Fibromyalgia since childhood has shaped my adolescence in many ways.

The Side Effects Of Having Fun When You Have A Chronic Illness

An Average Girl

There are so many things that I wanted to do but couldn’t. I wanted to play sports throughout high school, I wanted to go overseas for a gap year after graduating, and I wanted to study Speech-Language Therapy at university once I got back. As a result of my chronic pain, none of these things was meant to be.

While this upsets me, I do everything that I can to ensure that my chronic pain limits my day-to-day life as little as possible, especially my social life. Besides just hanging out, something I love doing with my friends is going out dancing. As you can imagine, dancing (or more like swaying side to side, in my case), is exhausting.

Going out for a single night of dancing can leave me flaring for up to a week afterwards. Another thing I like to do, that I don’t do nearly as often as dancing, is going to the theme park. This can easily become a full day affair. The constant walking along with the jarring of the rides can leave my entire body aching for days.

Some people may scoff at my enjoyment of these activities. After all, why would I do something that causes me pain? The answer is this: everything I do causes me pain. I’m in pain every second of the day. I’m in pain while I walk, I’m in pain while I sit, and I’m in pain while I rest.

When pain and/or fatigue rules your life so thoroughly, it can become a goal to not let it stop you from having fun. It’s almost as if I have something to prove to myself; that I won’t let the pain take my ability to have fun away. And luckily, it hasn’t. However, having fun with chronic illness can often cause side effects.

The Pain In The Moment

For me, the pain that I experience in the moment of doing an activity can definitely put a damper on any fun I may be having. As the day develops, my pain slowly gets worse. Having pain in one area is bad enough, however having pain that is spread throughout your entire body can be so incredibly overwhelming. The pain can sometimes result in me unconsciously becoming very grumpy, which can ruin the rest of the day.

Not only does pain impact any activities I take part in, but it also prevents me from doing specific activities that I would otherwise want to do. Despite me enjoying being active (it’s the resulting pain that I don’t enjoy), I can’t take part in activities such as hiking and kayaking because they raise my pain to unbearable levels.

Of course I often I push myself to do activities that I know will result in heaps of pain, however, it becomes a fine balance between being able to barely cope with the pain, and curling up in a ball, moaning as pain consumes me. I like to avoid the latter option.

The Side Effects Of Having Fun When You Have A Chronic Illness

Brain Fog

Another symptom that can ruin my fun is brain fog. For me, brain fog is very distracting, especially if I’m out trying to have fun. I feel like no matter how hard I try to concentrate; I can’t think or talk straight. Most of the time I have brain fog I feel like I can barely string a sentence together, that I’m talking nonsense.

When the brain fog is at its worst, I feel like my mind and mouth are numb. I can’t bring myself to speak, no matter how much I want to. I also can’t process what people are saying to me easily. Since this level of brain fog only occurs when I’m in very extreme levels of pain, I normally have warning signs leading up to this and can get myself home before I lose the ability to communicate.

The Recovery Time

Depending on how much energy I expend on an activity, my recovery can take anywhere from 3 days to an entire week. If I continually exhaust myself day after day without resting for a few or more days, I can be left feeling ill for weeks. I have learned this the hard way.

Every person with chronic illness has different symptoms that they experience during their ‘recovery period’. These symptoms can include muscle cramps, fever, flu-like symptoms, migraines, and of course likely the most common one, fatigue.

Recovery for me usually consists of lying in bed, too tired and too sore to get up for anything that isn’t imperative. I get an ache that is somehow both dull and sharp throughout my entire body and having such widespread pain only adds to my exhaustion.

So far, besides medication and rest, I haven’t found anything that helps with this kind of pain once it’s occurring. As a result of this, whenever I am planning something that I know will leave me flaring, I try to make sure that I don’t have any responsibilities (such as exams) or events for at least three days after the activity. That way, I can recover without missing out on something important or having to push myself.

The Guilt

I worry that whenever I’m seen out having fun, or whenever I post a picture of myself having fun on Instagram or Facebook, that people may see this as evidence that I’m not sick or that I’m making my symptoms up. In some countries, the social media accounts of chronically ill people are being used to determine whether or not they are “sick enough” to receive disability cheques from the government.

I find this ridiculous as I’m more likely to post a photo of myself on the rare occasions that I’m dressed up to go out, then I am to post one when I’m at home, barely able to move because of pain. Going out and having fun when you have a chronic illness a bit of a catch-22.

If chronically ill people don’t do enough, then they’re called lazy. If they do too much, then they aren’t sick anymore. Having a chronic illness and going about life is hard enough without having to face the judgement of others.

The Side Effects Of Having Fun When You Have A Chronic Illness

How To Have Fun With Fewer Side Effects

When I want to spend time with my friends but I’m flaring badly, I invite a friend or two over for a sleepover or a movie and some drinks (the legal drinking age is 18 here). It may seem kind of juvenile, but I will never get too old for sleepovers. This way, I can sit on the couch or lie in bed while catching up with besties. This is also a great time to catch up on Netflix movies.

If there’s no way to avoid a lot of physical activity that day, I make sure to keep my medication on me in case my pain levels become high.  Keeping your medication on you guarantees that if you need it for whatever reason, you have some on you.

Another tip for high activity days is if you are easily exhausted, don’t be too self-conscious to use a walking or mobility aid. My walking aid of choice is a walking cane, since it’s less harsh on my shoulders and back then crutches. Since the common stigma for walking canes is that they are exclusively for use of the elderly, I used to push myself too far because I was worried I would be judged for using a walking cane.

If the place we’re attending has a wheelchair that can be loaned out, such as a mall or a zoo, I will borrow the wheelchair if I know that I’m going to have a rough pain day. I don’t have a wheelchair (for ambulatory use) of my own yet, however, it is definitely a goal of mine.

If you’re heat/sun sensitive, try to choose activities where you can spend a lot of time in the shade. If sun hats and sunglasses help, make sure to keep some on you. Also, no matter what your symptoms are, keeping hydrated is important for your general daily well being. Make sure that you keep a bottle of water on you if you’re going to be out of the house for more than an hour at a time.

Having fun when you have a chronic illness can be very difficult, however, it is so important. It is easy to think that chronic illness takes the fun out of life, however, that isn’t the case. While I’m in pain every second of every day, I still aim to make the best of the life I’ve been given.

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.

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. 

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.

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

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.

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

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.

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

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.