This post has been lead by Shona of Shona Louise and features bloggers with all different health conditions.
Today myself and other spoonies (you’ll learn what that means shortly) want to give you an insight into what life is like living with chronic pain/a chronic illness. I usually blog about my genetic condition, Marfan Syndrome, and other topics over at Shona Louise but today I’m here to try to help get rid of the stereotypes often associated with chronic pain. A lot of people seem to already have an image in their heads of what someone who suffers with such pain or is disabled, looks like when in reality we are all different.
So, what is Chronic Pain? Chronic Pain is often defined as being pain that lasts longer than 3 months, it can be anything from mild to excruciating and can either be continuous or come in episodes. Usually caused by injuries or illness, but sometimes it can sometimes have no clear cause.
Often people who suffer with chronicpain and other health problems will refer to themselves as a Spoonie, this has come from The Spoon Theory
which explains how us spoonies live out our days. It’s a great way to explain to people who don’t understand why we get tired easily, or why we can’t always go out and do things.
We have a limited amount of spoons per day, compared to healthy and able-bodied people who have an unlimited amount, so we must pick wisely what activities we choose to do. Things like getting dressed and making a meal all use up spoons and often after doing even simple activities like them we are left in too much pain and too tired to think about doing anything else. That’s the thing with chronicpain, often it doesn’t just come alone. It brings along it’s dear friend, Fatigue. Trouble with sleeping and mental health problems like depression and anxiety are just some of the related problems.
Everyone is different though, some of us can work whereas others can’t. Some of us use mobility aids whereas some of us can manage without. This doesn’t make someone’s pain invalid though and it’s so important that we stress that. We all deal with things differently and too often people just make assumptions about whether someone is ‘faking’ or is actually in pain because they do not fit the image that they have already, wrongly constructed in their head. A great example of this is people leaving rude notes on cars parked in disabled bays because they see the person walking to the car without aid. You don’t know what that person suffers from. You know know their struggles. To try to raise awareness of chronicpain and to try to get rid of this image constructed by society some of us spoonies have come together to share our stories, today we are going to tell you what chronicpain looks like to us, the reality of it.
My story – I’ve had a diagnosis of Marfan Syndrome since I was just a few months old, it’s a genetic connective tissue disorder that affects just about every part of my body. I’ve got a lot of secondary conditions as well and altogether this means I am in pain all day, everyday. Chronic pain has affected me greatly for about 3 years now, at first I was okay walking on my own but then problems with my hips, back and some complications after spinal surgery meant I had to start relying on using crutches. Then I started using a wheelchair for longer trips out before finally I was using a wheelchair all the time outside of the house. Now, just recently, I’ve started using a power chair as the pain in my upper body means I cannot propel a manual wheelchair. Even just sitting up in my power chair is extremely painful though, I have cysts at the bottom of my spine which mean that even sitting up can be excruciatingly painful. In a flare up you can often find me in bed for 3/4 days struggling to even go to the bathroom, things like getting dressed and going out are completely off the agenda. But, when I do go out I use a lot of my energy up on doing my hair and makeup to make myself feel better, often this leaves people thinking that I’m faking or making up my problems though. Even if I just smile when I’m using a wheelchair or power chair people give me odd looks as if I can’t possibly be in pain or disabled if I am happy. I try to stay positive about everything but I believe that being open and honest about my health and life will help to remove the harmful stereotypes that exist in our society.
I have chronic basilar type migraine (causes loss of consciousness) & hemiplegic migraine. I’ve had this since I was 11 years old. I go to bed in pain & I wake up in pain. It’s constant. People have difficulty understanding this, even medical professionals. Other than my precision tinted lenses, this condition & the pain it causes, is invisible. Unless I’m unconscious, you wouldn’t know I was in pain. My Hypermobile Ehlers-Danlos syndrome became problematic when I was 17. My wrists were the first area of my body to become painful. I wasn’t diagnosed with EDS until I was 27, which isn’t uncommon. Despite the constant pain spanning my entire body & experiencing subluxations (partial dislocations), my pain didn’t become visible until I needed to start using crutches last November. My knees were unstable, causing me difficulty in walking & I was having difficulty putting weight on various joints because of pain. It wasn’t long before the distance I was able to walk with my crutches had decreased. I was housebound for three months so my parents bought me a wheelchair. Remember me saying my wrists were painful? Well, that’s continued & I now also experience extreme pain in my elbows, shoulders & back. As a result, I can only self-propel myself a short distance once a week. I’m getting a powered wheelchair soon so that I can become more mobile & live my life to it’s fullest. Until then, my pain keeps me in the house the majority of the time. So even though it’s visible with my mobility aids, I’m not visible because I’m not able to get into my community often.
Me! – Georgina – I wanted to contribute to these posts even though I’m away as it means so much to me.
I am technically not diagnosed with anything other than chronic back pain after a car accident. To anyone walking past me in the street, I am just the fat and unreasonably good-looking, stylish girl, but inside I am screaming in pain. Getting ready alone takes up so much energy that most times I don’t even want to leave the house when I’m done. My pain means that I find it difficult to put my own bra on, I can’t wear tight fitted clothes that add to the strain on my back and I can’t wear shoes that don’t have some sort of support. I can’t walk for long without pain, I can’t sit for long without pain. But you wouldn’t know any of that unless I told you. Some days I wake up and my arms don’t work, nobody has any idea why, but we’re looking into it. A day-to-day job for me would be impossible and so, I freelance as a social media manager and a blogger. I manage my workload but I’m in constant pain doing so. The only escape is when I’m asleep, and so, I sleep A LOT.
For the most part, I look like a normal, happy, healthy 27 year old. I walk my dog 5 miles a day and swim 1km three times a week. I work full-time with lots of travel and frequently have problems staying away from my work email at 10pm or on a Sunday. I also have Arnold Chiari Malformation, a neurological disorder that means my brain herniates into my spinal column. I walk with a crutch, wear specialist glasses for looking at a computer screen, and live on painkillers. Because I have rosy cheeks, a smile on my face, and I’m not wasting away, people often assume that I am perfectly active and healthy young woman. In truth, I suffer from immense pain on a daily basis – my back spasms if I sit still too long, I get phantom pain in my limbs, horrendous itching from nerve damage on my left side, blinding headaches, and – if I don’t rest enough on a given week – I will likely spend two days with my head on a pillow with a sick bowl balanced precariously on the edge of the bed. I struggle to maintain a healthy balance of being able to work and have a social life because working and keeping active (if I don’t keep active my body literally seizes up and stops working) exhausts me. This means I have very few people I can really call friends because most people can’t understand why I have to cancel on dinner dates or can’t go out on a Friday night. I have to put up with comments like ‘hop along’ and have been told to ‘get back in your disabled parking space’. I have also been called inspiring but I don’t quite believe that – I’m just me, doing the best I can with what I was given.
I started to notice my joint pains when I was around 21. At that age it seemed crazy, I laughed about my old woman status and the fact that it felt worse in the Winter, not realising it wouldn’t be going away. At the time I had a very physical job in the theatre that involved lots of heavy lifting. The pain began in my wrists, it made me feel weak, and in a male dominated industry it was put down to me making excuses for not being strong enough. I went to the doctor that first year and was referred up to the hospital, the appointment I was promised never came. This became a running theme over the next 7 years and I’m still feel no better informed about my condition today. Being in a physical job meant I had no option to stop. As my career picked up I worked longer hours that involved lots of climbing ladders, unpacking trucks and rigging lighting and scenery. That was the year I noticed it spreading. Soon my knees were affected the most but I’d also felt it in my hips and ankles too. In the end, I had to change careers. I traded in a job I adored for an office job because I knew if my body was deteriorating this quickly, there was soon going to be a point when I just couldn’t carry on, and when you are self-employed this is a scary thought. I eventually managed to get hospital appointments but when it wasn’t arthritis they drew a blank, so now I’m just trying to live with it. My knees are the worst offenders, so it makes it hard to do a lot of the things you want to do in your twenties, wear heels, dance, or just bounce out of bed! It’s not at all obvious that I’m in pain because if I talked about it all the time it would drive people mad, but it’s there.
I was diagnosed with fibromyalgia in 2013 after suffering from unexplained symptoms for over two years. Nobody seemed to know what was wrong with me and I was often left feeling like a hypochondriac. It took persistence and determination to finally find a doctor who took me seriously. Even then, he wasn’t sure what was wrong but thankfully referred me to the rheumatologist who finally diagnosed me with fibromyalgia. One of the primary characteristics of fibromyalgia is widespread muscle and joint pain. At the time I was diagnosed I literally hurt from head to toe and the pain I felt was unrelenting and at times excruciating. Yet on the outside, I looked (and still look) absolutely fine. For a long time, many were unaware that there was anything wrong with me because I chose to keep my diagnosis to myself. I think there are people who fail to appreciate that chronic pain is often invisible, as is the case with me. Unless you know the subtle signs to look for my pain cannot be seen. I get on with life as best as I can and some people fail to understand that just because I am smiling, laughing or being my usual upbeat self that it doesn’t mean I am not in pain. My pain can also be variable; both in severity and location. This means that one day I may struggle to do things that the next day I manage okay. This can be difficult for people to understand and there have been times where I have felt like a bit of a fraud because of this. I am thankful that over the years I have found ways to better manage my pain levels but this has come at a cost. Fibromyalgia comes with a multitude of other symptoms and these, along with my chronic pain, have meant that I’ve had to leave the career I loved. I’ve also had to learn to accept help from others, to say no when I need to and I’ve also had to make some adaptations. As an example, I use a mobility scooter at times to allow me to get out and do more without causing an exacerbation of pain and fatigue. Learning to live with fibromyalgia has been a difficult adjustment and one I wouldn’t wish on anyone.
I discovered I had Ehlers-Danlos Syndromme when I was 21. At the time I was suffering with a lot of pain and cracking joints, and just felt like my body was giving up on me. I often get funny remarks from my friends when I mention I’m in pain, because I really don’t look ‘ill’ or in any discomfort. I find that I can’t walk around, or as far as I used to, and often I start walking with a limp if my back and hips start hurting. To anyone else I must look like I’m just overweight, and have often had comments that surely if I lost weight it would help. The thing with EDS is that it can vary from person to person, and compared to others with this, I’m not in half as much pain. I do however suffer a lot. I can’t go on full days out with lots of walking around without a lot of pain. My joints can pop out at any time causing me a lot of pain, and I get tired very easily. I’m lucky that I can manage to work full-time, but I need to make sure my evenings and weekends are fairly quiet for me to be able to rest. My condition can be extremely frustrating, especially when my body just stops working and I’m unable to do things because of the pain.
ChronicPain looks like me! I’m AJ and I honestly can’t remember the last time I wasn’t in pain. As of now my pain is undiagnosed, my life is a constant merry-go-round of Drs appointments, specialist referrals, MRIs, prescriptions, and tears. Fibromyalgia is the word on everyone’s lips, and what a scary word it is. There is no cure for Fibro, if diagnosed I will be on medication for life, I will most likely get progressively worse, and for someone who registers a 7 on the pain scale ON A GOOD DAY that is not a fun concept!
My chronic pain has robbed me of all the things I enjoyed. I can’t run anymore, hell I can barely walk a mile. Dancing is out of the question unless I want to be sofa bound for a day afterwards. My high heels (once a carefully cultivated collection to rival Imelda Marcos) have been donated, or languish under the bed because I just can’t wear them anymore.
I can’t carry my own handbag without my shoulders turning into white-hot points of pure pain. And it’s not just the big things either- I can no longer clap at a show without pain shooting from my fingers to my neck, hugging is out of the question (unless you know the THREE points of my body that don’t hurt under your touch), my fingers forget their job a lot, one minute I’m writing and the next the pen is on the floor because grip is apparently not something I have now.
I’m currently sat cross legged on a sun lounger and my feet have gone numb, and my knee has swollen for no obvious reason. There are so many more things I could talk about but we’d be here for days.
It’s important that you know the final part though my illness is invisible, you can’t see that my whole body aches constantly, you can’t see the intense pain that undulates through my back muscles, and you can’t see that my smile hides all of it.
To you I’m just a girl. In reality I’m just a girl, standing in front of a boy silently begging him to help her sit, help her stand, hold her up while she tries to have a normal life,and to carry her handbag when she just can’t anymore. To you I’m just a girl, but really I’m a very tired, very sick young woman.
I’d say it is pretty clear after reading all that chronic pain is different for everyone! Sometimes you can see the pain people are in, with their limp, or walking aids, and sometimes you don’t see anything. We all look different, get around differently and cope in different ways but we are all on a similar journey. Chronic pain must be taken more seriously, awareness is just the start of that and hopefully you’ve now got more of an understanding about what life is truly like when you are in pain all the time. If you do know someone who is in pain, if you take anything at all away from this, we all hope it’s just the understanding that our pain does not go away and we cannot control it. Bear with us.