A.S. Face 2237: Malise

 A.S. Face 2237: Malise

I was diagnosed with Ankylosing Spondylitis in 2019. I was 21 at the time; I was lucky to have a quick diagnosis of 6 months but that was because I was persistent in finding out what was wrong after some many doctors just told me ‘I was overworking myself’.

The past 3+ years have not been easy; I have gone from having no health conditions to having an abundance of them. At one point in time, I was on 18 meds a day. I’ve been on opioids, I’ve done physiotherapy, I’ve had side effects to medication, I’ve had more X-rays and MRIs than I can count, I’ve had uveitis, I’ve had costochondritis, I’ve had surgeries, I’ve worn back braces; it’s been exhausting.

You become a ‘medical mess’; that’s how I describe myself whenever anyone asks me to explain my medical status and it’s debilitating. You start to hate yourself and your body and just want too desperately find a way to make it better, but sadly there isn’t.

It’s an ‘invisible illness’, people don’t believe you when you say you’re struggling to get out of bed and walk, people don’t believe you when you must cancel plans because of pain or just pure exhaustion.

That’s the saddest realization, there’s no cure; there’s only management. You never know when you’ll have a flare up, you’ll never get better, you’ll never be healthy again.

Although there is so much sadness that comes with this condition, there are rays of light.

You become your own advocate and you really know your worth. I have never and will never let anyone speak badly about my illness. You gain an understanding of how important every opportunity is and how you must not let an illness define you. You learn to celebrate the little things, I never once thought I would get excited over lessening my medication or when you wake up one day with minimal pain. But you do, you learn to value life on a whole new level.

With this illness I have really learnt how to love myself, illness and all.

You also meet an amazing community to help you through the hard times and to be there during the good times.

I’m still not better and I never will be and I’m okay with that. I just want to let you know that it’s okay that it’s hard and it’s okay that you’re scared and worried and upset and angry. I don’t think those are emotions I’m ever going to stop feeling. My heart goes out to you all and know I have immense love for the AS community and the people that support us. You’ll always be strong to me and I’ll always support you.

It’s hard and I understand that, but remember that AS isn’t who you are, it’s just a part of who you are.

A.S. Face 2195: Sarah Williamson

A.S. Face 2195: Sarah Williamson

I was diagnosed with Ankylosing Spondylitis when i was approx 23 yrs old (2013) after numerous tests came back clear i was always a sick child and suffered from Migraines very often (at least 2 or more a week, 1 migraine can last from a few hrs to a week). I worked full time from 16 and a half to 28 yrs old when i had to resign from work due to AS, migraines and Fibromyalgia. I was diagnosed with Fibromyalgia in late 2016. I have tried Humira injections they did not help now i’m on Simponi injections every 4 weeks and numerous other tablets.

A.S. Face 2146: Tanya

A.S. Face 2146: Tanya




My name is Tanya and I live in Australia

Like many women with AS, I was only recently diagnosed at age 40, after I had given up years earlier trying to figure out what was wrong with me, and thinking as others had suggested to me, that it was because I was a hypochondriac and should have a more positive outlook in life.

Luckily I had a major flare (dismissed again) followed by my first bout of Uveitis (Yay!!) the Opthamologist who caught the Uveitis asked if I had ever had back pain? YES …… my first signs appeared when I was @14 and my legs started giving away unexpectedly dropping me to the ground and the excruciating SI pain started, making movement, sitting and sleeping unbearable. This ramped up after the birth of my son @21 and never stopped, just ebbed and flowed as I unknowingly fought a constant battle against inflammation throughout my body thus confirming my hypochondriac status.

The correct tests followed with a referral to see a rheumatologist and after some debate, Xrays, MRI and bloodwork (with slightly higher then normal ESR and CRP readings), finally a diagnosis “Ankylosing Spondylitis” I was elated to have proof, then the reality and grief hit, I was unlikely to ever get better, only progressively worse as I age and nothing was going to cure me. Shit!

Today I research and implement many protocols both pharmaceutical and complimentary in order to stay healthy and in balance, in the hope I do not wake up tomorrow in a flare, a flare that could last months and leave me incapable of movement or looking after myself and family, or in unbearable pain, but it’s not always possible, I know it’s not my fault and my body is fighting as best it can, under attack from within.

I try to focus on moving forward and not the present pain, I know eventually the pain will ease and I will make it out the other side to continue on to fight the next battle.

Australia

A.S Face 2132: Paul Foord

A.S Face 2132: Paul Foord

Queensland, Australia

A.S. Face 2102: Eddie

A.S. Face 2102: Eddie

A.S. Face 2085: Marisa Blandford

A.S. Face 2085: Marisa Blandford



My name Marisa, I am 37 and I have Ankylosing Spondylitis and Fibromyalgia. I am a wife, mother of two beautiful kids, and work full time as an Executive Assistant.

I wasn’t diagnosed until 3 years ago. I have suffered with back and knee issues for most of my life, that have been getting progressively worse over time.

Since being diagnosed, I have tried Simponi and Humira. So far, the Humira takes the edge off most of the time, however, I have other non-related surgery so have had to stop my treatment for 6 months – I am currently 3 months in and the increase in severity of my symptoms during this time has me finding it a tad hard to manage basic tasks day to day at times. Some days with the Fibro as well, you just have to take some ‘me’ time and spend the day resting in bed in order to keep on going the next day.

I hope to one day hear the news that they have found a cure for this debilitating disease, not for me, but for the sake of my children should they ever get diagnosed with the same condition as their mum, and for all the other children and young adults facing this so early in their lives.

I am thankful that at this point and with two young children, I am not suffering as much as others whose condition has worsened further than mine, but I am not blind to the reality that one day the injections will stop working and things will start to get worse. With every inch of my soul I hope that day is a long way off yet, and when it does come I will continue to fight it with everything I’ve got.

I am always talking to friends, family, and colleagues that ask me about my illnesses, in the hopes of raising more awareness about these conditions.

Western Australia, Australia

A.S. Face 2067: M.J. Rowan

A.S. Face 2067: M.J. Rowan




My symptoms started after the birth of my daughter 13 years ago. At first, it was limited to inflammation in my knees which I would regularly have drained. Hot tip. If you are having anything drained, sports medicine is the way to go. I wrangled a referral to the doctor that looks after our state football team The West Coast Eagles. He could drain a pint of yellow goo and push in some steroids in sub 1 minute without any ultrasound guidance.

My experience with Rheumatologists wasn’t great. I remember one saying “we don’t know what causes it, 30% of people will have chronic RA, 30% of people will only have one flare, 30% of people will have it come and go and I don’t know which one you are”. I remember thinking her maths was as good as her bedside manner.

I required a cane on the bad days and treated myself with compresses, lotions, potions, acupuncture and everyone favourite. Heat packs. Beautiful, beautiful heat packs. I also kept my knees strapped tightly in fear my knee caps might float away to other parts of my body. This with regular drainage of my joints kept me mobile.

About 3 years after my first symptoms while on a family holiday in Thailand I had my worst flare ever. I couldn’t walk. I ended up in a wheelchair and was on some very heavy-duty medications that I am sure would not pass any kinds of FDA approval. Good times. When I returned to Australia I was referred to the man that changed my life. Professor Ang.

I was pretty defeated and very depressed by the time my appointment came around. My quality of life was poor. I was in pain all the time. Even the Prof. was unsure how I was walking at that point. Imaging showed I had unilateral grade 3 sacroiliitis and my inflammation markers were off the chart. I was diagnosed with AS at 33 years old.

In Australia, you need to go through a hierarchy of drugs. If one doesn’t work you move to the next and so on. My first was methotrexate. You know that meme that says “The good news is, it’s not cancer, the bad news is you have chemo for the rest of your life”. That’s methotrexate. I hated it. I would have it once a week and then could not move for 24 hours. I have never seen the Walking Dead but I think that’s what I looked like. Weekly blood tests, I started losing my hair, and it didn’t work. Nada.

Next step Corticosteroids. Also no relief. Now I was overweight, hairy and pretty angry.

I stopped seeking medical assistance after this. I had had enough. There was no cure in my mind and when I look back it was a pretty hideous time emotionally. I was clinically depressed and had some pretty dark days. The thing about chronic pain is no one gets it and no one wants to hear about it. You feel like a burden to everyone, so you paste on a smile and keep everything bottled inside. Which I did. Queue mega flare.

I returned to my rheumy who had expressed to my GP that he thought I was in denial and that treatment was required pretty quickly to stop further damage. Fortunately, by this stage, I had qualified the thirds stage of treatment, Humira. At a cost of almost $2000 a month (two injections), you need to be approved by the Australian government for the PBS price of $34. Humira has been an absolute miracle. I was in clinical remission within months and although I still struggle with pain and flares I am mobile and don’t require walking aids.

Humira suppresses your immune system, so balancing the risk of infection vs the chance of inflammation is a juggling act but I have managed to get away with only a few scares. My recent birthday was spent getting brain MRI’s searching for infections. That’s no party. And I cried. Because I wanted to. *bad song reference*

While my markers are down, my AS is, unfortunately, progressing into other joints and organs. Eye inflammation being the most recent, and probably the most painful and scary. We can slow progression. But there is no cure. I try to be realistic and proactive about my future and have returned to University to increase employment opportunities for the slightly less mobile. I stay as active as I can and set small physical challenges for myself. I have climbed a little mountain (Bluff Knoll), completed a couple of rounds of 30 days of hot yoga, participated in a 15km walk for charity and most recently learning to use a stand-up paddleboard. Little things to non-spoonies, but all huge achievements for me.

I am not sure what the future holds or where AS will take me but I have a great support network, and for that I am grateful. In the meantime, I just keep swimming.

(… and studying, and yogaing, and hiking, and SUPing.)

And smiling.

This photo is me at the top of Bluff Knoll. I am still stupidly proud of myself 🙂

Perth, Australia

A.S. Face 2065: Renee Crisp

A.S. Face 2065: Renee Crisp



My name is Renee Crisp. I’m from Australia. I was diagnosed just under a year ago. I am now on simponi which was a miracle drug at the beginning but unfortunately was appeared to have worn off. It’s funny, two years ago, I had never heard of ankolysing spondylitis but I have now met three people in person in the last two months that have it as well. I find great comfort in the many AS facebook support groups. I have learned so much about this disease from all of those brave warriors.

A.S. Face 2027: Elise

A.S. Face 2027: Elise



My name is Elise, I live in Australia, and I was diagnosed with AS in March of 2015 when I was 22 years old. Just over a year before this, I had moved interstate away from all of my family and friends to start studying towards a Ph.D. in English Literature. So when I started suspecting that something was wrong, I really didn’t have a support network around me. I had made friends in my new town and at the University I was studying at, but these were people I had only known for a year or less. Over time, though, many of these people became vital to my survival – offering to come to doctor’s appointments with me, helping me to get up from my desk or walk across a room if I couldn’t manage it, or just being there when I needed to cry.
When I first went to a doctor about some of my symptoms, I didn’t think it would be anything serious. I thought I had injured myself at the gym or was sleeping in a funny position – I thought that, like most things, it was something that could be fixed and would go away. It was roughly 6 months between my first trip to the doctor and my specialist appointment where I was diagnosed with AS. In that 6 month period, my symptoms worsened so dramatically that my specialist was visibly alarmed and the speed and veracity with which my disease was spreading throughout my body. I had (and will now always have) serious damage to both of my sacroiliac joints, as well as permanent damage to multiple joints located in fingers, toes, wrists, jaw, and spine. By the time of diagnosis, I could barely walk, couldn’t work, and my studies were going nowhere.
When I was told that this problem was not something they could get rid of but would be a permanent condition that could continue to get worse, the thought of having to live with the pain I was in forever made me want to die. I became so depressed that I spent months in grief counseling following my diagnosis. One of the reasons I feel that this counseling was so effective was that my counselor, as well as being great at his job, was also a paraplegic. Every week, I had someone to talk to who knew exactly what it was like to have your body change on you irreparably, to feel betrayed by your own biology, and to have to live in a body you no longer recognize. He helped me to accept my new reality because he had been there himself, although for different reasons. I will forever be grateful to him for his kindness, good humour, and everything he taught me about learning to live with a disability.
During this time I also started Biologic therapy and, though this took a few months to really start working, it has improved my life dramatically. I can now walk again (plus quite a few months of physical therapy at the start of biologic treatment), exercise, and mostly get on with day to day life in a way that appears normal to most other people. My test results for the past 6 months have not been very promising, and it appears as though my body may be starting to reject the biologic I have been on for 2 years now. The pain is steadily returning, and some of my joints are losing mobility again – it is progressing very slowly, but it is there. But I am not scared this time because I know that I have survived all of this before. My message to any newly diagnosed AS-er would be that it is okay to be angry, full of sorrow, and to feel like a stranger in your own body. It will be frustrating, and it will be hard work. But you can get through it, and find the other side (whatever that looks like for you).
To end on a happy note, one of the friends I made when I was first getting sick is now my fiance, and I am going to re-start my Ph.D. studies now that I feel up to it again.
May your flares be few, and your happiness be great,
Elise.

A.S. Face 2008: Karen Chapman

A.S. Face 2008: Karen Chapman

A.S. Face 1935: Julia New

A.S. Face 1935: Julia New


My name is Julia New, I’m from the East coast of Australia, and I was diagnosed a year and a half ago, after being misdiagnosed for well over a decade. I’ve had to leave careers, I’ve been forced to ask for help from family and friends to help with my children, and even now I struggle on a day to day basis with pain management as we haven’t yet found a solution that works for me. AS is frustrating because you still look healthy and capable and yet all my bones are screaming. People who don’t know my situation think I’ve hurt myself or they think I’m putting it on. I constantly hear people say “you’re too young to have pain like this”. The hardest part is when doctors don’t believe that your pain is real, and unfortunately that happens far too often.

A.S. Face 1843: Kane Cooper

A.S. Face 1843: Kane Cooper



My name is Kane Cooper, from Brisbane, Queensland, Australia
I was diagnosed in 2008 and have been fighting the monster that is AS since. Strength in numbers!
Queensland, Australia

A.S. Face 1813: Anita

A.S. Face 1813: Anita




‘My name is Anita, I live in Sydney Australia. I’m in my 30’s. I’ve coped bravely with AS symptoms for many years but things are getting more challenging nowadays. I’m thankful for all the good in my life especially my beautiful children and the love of family and friends.’

New South Wales, Australia

A.S. Face 1802: Kim Rogers

A.S. Face 1802: Kim Rogers

My name is Kim Rogers. I live in Gympie, Queensland, Australia and I was diagnosed with AS in January 2016 at the age of 48.

I am a wife and mother to an active 10 year old boy, and work full time as a project officer in water resource management.

My passion in life, besides my family, has been playing sport – especially field hockey. I started playing when I was five years old, and still played until shortly before I was diagnosed.

At the age of 19, I injured my lower back. Originally diagnosed with a strain, my back never got better, and I was eventually diagnosed with two prolapsed discs (L4, L5). I suffered with sciatica and constant pain in my back and legs, with several occasions where I had severe spasms requiring hospitalisation until 2006, when I fell pregnant with my son. During this time I had continued to play hockey, even though I lived on ibuprofen the whole time. Magically, my back pain disappeared while I was pregnant, and did not return once my son was born.

Following the birth of my son I had bursitis in my right hip. I went back to hockey and commenced a fitness and diet regime so that I could represent Gympie in the State Ladies Masters Championships, and just be healthier in myself. I lost 20 kg and was the fittest I had ever been. That year, I won every trophy available to me and Gympie were runners up in the State Championships. We went on to win the Championships the next two years in a row. That last year I really struggled with my body and was having a lot of trouble with my fitness. The following year, I struggled to play, suffering a lot more injuries and started to have a lot of pain in my feet. I was taking every supplement that I could to help reduce muscle tightness and body pain. Everything went downhill from here – bursitis, torn muscles, plantar fasciitis, dactylitis in my right big toe, tendonitis in my shoulder, elbow and wrists. I even started Pilates because it was too painful to walk or run.

I was still playing hockey, but it was difficult and in September 2015 I had a massive flare up in my right sacroiliac joint. I have lived with pain most of my life, but I have never had pain like that! Three weeks in extreme pain and throwing up every time I tried to take any drug to reduce my pain.

A few weeks after going back to work, another flare up in my left SI joint laid me up again, but this time I had prednisone and cut the length of time in extreme pain significantly. My osteopath was the first to identify the problem and recommend I ask my GP for a referral to a rheumatologist. It took 4 months to get to see him but he diagnosed AS straight away. My blood tests, MRI, history matched the markers in my body – psoriasis, dactylitis, bursitis etc. he told me that he believed that I had had AS all my adult life but had finally reached my pain threshold when it flared up SI joints. I agree. He put me onto Humira and I do not have flare ups while I’m continually medicated.

The first 12 months has been difficult and I have struggled to adjust to life where the simplest things are so very difficult. I have been grieving for the life I’ve lost and feeling guilty for the not being able to contribute to things the way I used to. I worry that my reduced fitness and mobility will shorten my life and I will not see my son grow up.

In addition to the AS, I still have two prolapsed discs and degenerated discs some with stenosis.

I am still learning my limitations and how to manage myself. I still pine to play hockey, mow the yard, garden, and go bushwalking. I dream of being pain free, something I haven’t been since I was 18. But I’m happy too. I now know what’s wrong with me, and there’s so many people out there just like me. I know that I’m very lucky in many ways that the AS did not get bad until my forties. I know that there are many people much worse than me. I have a husband and child who love me and look after me on my bad days, and give me a hard time on my good ones 😊. I wonder what my future holds and hope that my medication continues to work for me.

Thank you for giving me the opportunity to tell my story.

Queensland, Australia

A.S. Face 1794: Sandy

A.S. Face 1794: Sandy

I live in Sydney Australia

I have lived with AS for around 21years been on all sorts of medication. The only way for me to function and be pain free is on biologics- I guess I am one of the lucky ones it works for. I am so grateful it works but always have an internal battle in my head as would love to be in remission and free of all medication.

I work in the allied health industry and do my best to live a healthy life with regular exercise and a healthy diet

I feel my family and a lot of my friends can’t really relate to what I go through with this disease. It’s great to meet others in the same circumstances as I don’t feel as alone living with this chronic condition.

New South Wales, Australia

A.S. Face 1784: Marcus

A.S. Face 1784: Marcus




My name is Marcus i’m 44 & from Sydney Australia

Pain started in lower back at age 16, Diagnosed 7 years later at age 23

Went the medical route then the alternate route for many years with no

success, eventually keeping it under control with diet & exercise & the

occasional anti inflammatory, until 4 yrs ago when my hips fused & couldn’t

walk or do anything anymore, had give up working & go on disability. Had

my hips replaced last year & now after 6 months of rehap i can now walk again.

New South Wales, Australia

A.S. Face 1777: Brooke Oakley

A.S. Face 1777: Brooke Oakley



Hello, my name is Brooke Oakley and I am 43 years old. I live in N.S.W. Australia and have been diagnosed with Rheumatoid Arthritis along with Ankylosing Spondylitis.

New South Wales, Australia

A.S. Face 1764: Kiara

A.S. Face 1764: Kiara

A.S. Face 1757: Debbie Delaney

A.S. Face 1757: Debbie Delaney

Hi my name is Debbie Delaney and I live in Queensland Australia. I was diagnosed with AS in 2009. I still work full time but everyday is a struggle. I would love just one day pain free. I enjoy reading everyone’s stories. Thank you for being here for us all.
Queensland, Australia

A.S. Face 1748: K.G.

A.S. Face 1748: K.G.

South Wales, Australia