Ankylosing Spondylitis

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Chronic Illness: Living With Pride, And Having Purpose

Part 1 of 2 I am incredibly proud to have Ankylosing Spondylitis!

You heard it right. I am proud to embrace this lifelong chronic condition that brings pain and challenges into my everyday life.

But why, you may wonder?

Because, with all my heart, I genuinely believe that Ankylosing Spondylitis has given my life a profound purpose.

From the very beginning, I wore my diagnosis with pride. I was only twelve years old when I was diagnosed, and while at first, it didn’t take up much space in my mind, it soon became a defining part of who I am. Ankylosing Spondylitis became my unique identifier, something that set me apart from others. I may not have been able to pronounce it correctly, but boy, did I think it sounded pretty cool.

Granted, in the mid-90s, treatment options for pre-teens were limited, so I didn’t dwell on it too much. I remained active, played sports, and climbed trees like any other kid my age. I didn’t let my AS bring me down; instead, I chose to live with it proudly.

In 2007, a pivotal moment arrived. I established my first support group, realizing the impact and presence of my AS. While I hadn’t pursued much treatment for it at that point, I possessed a strong desire to support and lead. Education was already a part of my life, and I felt that spreading awareness, sharing information, and fostering conversations would be the perfect way to create a safe haven for fellow AS patients.

It amazed me how isolated I had felt in my condition until that point. I had never met another person living with AS, nor had I heard it mentioned by anyone besides my diagnosing doctor and the one who reminded me of my condition when I had temporarily forgotten. But through my support group, I discovered a vibrant community of individuals facing similar challenges. And incredible things began to happen.

I do not say the following to boast, but rather to emphasize the impact this group had on my life: within a few years, my support group had amassed close to 10,000 members. (Today, it is home to 45,000 members) The group members themselves reached out to me, expressing gratitude and declaring that this was the best support group they had ever encountered.

In that moment, I realized that this support group was not solely a means to give back; it had become my true purpose. It bestowed upon me a sense of pride and fulfillment that I had never experienced before. Spending hours on Facebook was no longer just a pastime; it became a meaningful way to connect and support others facing the challenges of AS.

Today, I manage several support groups both online and in person. It is a role I would not be able to fulfill if I didn’t have AS in my life.

As my groups continued to grow, I found myself becoming more involved in the Ankylosing Spondylitis community. Meaningful connections with fellow AS advocates surfaced, and with them came new and incredible opportunities.

Healthcare corporations, pharmaceutical companies, and nonprofits started seeking my expert opinion. Can you believe it? Me, someone who lacks a medical degree or the title of doctor. But yes, I was being sought after for my thoughts and insights.

Why? Because these organizations genuinely value hearing from people on the front lines, from the patients themselves. With my involvement, I have had a hand in making decisions about billion-dollar corporations, hospitals, and local support systems. Together, we have worked to improve the way these entities interact with their clients.

So, you see, I may have Ankylosing Spondylitis, an incurable chronic condition that brings pain and dismay. But I proudly embrace it for the purpose it has given me, the support I am able to provide, and the opportunities to make a difference in the lives of countless others.

And, You Can Too!

What’s the purpose behind sharing all my life’s accomplishments?

It’s not about boasting.

I wanted to share everything mentioned above to offer inspiration and empowerment.

You also have the ability to become a patient leader!

I’m not exceptional. (Despite what my mother may say)

I’m an Ankylosing Spondylitis patient, just like you.

The fact that you have the disease makes you more knowledgeable than most doctors. They may learn everything about AS in medical school, but until they experience the pain of waking up, struggling to walk, forgetting their own name, and collapsing in bed at 5:30 (only to fall asleep at 3), they truly don’t understand.

The world requires more advocates, leaders, and experts who support, educate, and fight.

You have the capability! No, really, you do!

One might consider this counting my bl


Migraines, Life-Long (Suicidal) Depression, A Real Desire to be with my Lord and Saviour, More Debt than I can afford

Living with Life-Long Suicidal Depression since at least 4-years-old (mid 1970s); and Migraine Headaches that have been regular (at least 1 to 2 times a week [more weeks now are turning in to at least 2 days] since the mid 1990s) and many other health problems that are on and off weekly or monthly; Extra Debt that I was pressed in to; which can cause me to lose the house, SSDI so it is hard to earn extra money to get out of Debt; and with Life-Long Suicidal Depression, in addition to the Major Pains, I really have been desiring more to be able to go Home to be with my Lord and Saviour Jesus Christ.

I would greatly appreciate any feed back.

#MentalHealth #Migraines #Depresion #SuicidalIdeation #Debt #PostTraumaticStressDisorder #BPD #Bipolar1 #BorderlinePersonalityDisorderBPD #BipolarDepression #BipolarIDisorder #BipolarDisorder #BipolarI #BipolarType1 #CheerMeOn #Bipolar1Disorder #BipolarDisorders #MigraineHeadaches #AutismSpectrumDisorder #AutismSpectrum #Autistic #SeparationAnxietyDisorder #GeneralizedAnxietyDisorder #IllnessAnxietyDisorder #SeparationAnxiety #AnxietyAttack #AdrenalInsufficiency #AnkylosingSpondylitis #ChronicFatigueSyndrome #DistractMe #Selfharm #PanicDisorder #PanicAttack #PanicAttacks #worry #highfunctioningautism #AttentionDeficitHyperactivityDisorder #DiabetesType2 #DiabetesII #SuicidalThoughts #SuicideAttemptSurvivors #IfYouFeelHopeless #suicidal

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Hi everyone

I am Kerrie. I am a mom to two boys, one in heaven and one here with me. He is really not a boy anymore but a young man.

I live with multiple health challenges including asthma, diabetes, fibromyalgia, osteoarthritis, Ankylosing spondylitis, spinal stenosis, a bulging disc, degenerative disc disease in my cervical and lumbar spine. I am in pain all the time. My biggest problems are trying to work and trying to keep my small apartment clean by myself. I have also dealt with severe financial problems the last few years. Paying rent and buying food are huge issues for me.

I am here for support and to try to support others.

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Love isn't real

First off what really is Love? Now a days you hear it everywhere from everyone. for either a took to use to get what they want, or a way to blind you to their alternative motives. From parental figures who all abandon you and blame you for their suicidal attempts, to the guy trying to get into your pants then drop us as soon as it's convenient. or even the guy that you married 20 years ago had 2 children with and thought would last until death. Nope. they don't want the life you've built together anymore. they don't care anymore. I mean what the everlasting hell. how do u start over at 37? 20 years....still trying to figure out why. and he seems to enjoy the fact that with no explanation give me such torture and grief. who does that?! if we do end this, how do I begin to explain this to the kids when I don't understand it myself?!....I'm so tired of the emotional and physical pain of the ankylosing spondylitis, fibromyalgia. the emotional aspect of the BPD, anxiety and adhd...I just want to be happy, protected and feel loved and dare say appreciated. like someone actually gives a damn and is scared to lose me. I feel like I'm replaceable and tolerated until the next best thing is available.

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Oops I Did It Again!

I started a new treatment for my AS and it has worked amazingly well! I have a lot more energy and pain is not totally ruling my life.

On the other hand, I have taken advantage of this boost in overall health and overdone it. Now, I am tired and I just want to take a nap! #AnkylosingSpondylitis #axspa #ChronicIllness

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remembering to be well

My story -

I grew up in the 80s/90s where being “double-jointed” was just a weird quirk/party trick. Well, the women on both sides of my family were affected pretty hard by the hypermobility.

I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unairconditioned in Texas. I was helping my mom with dishes when I started to feel slightly dizzy, so I held onto the counter-top.

When I woke up after fainting, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.

And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.

Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).

So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, bursitis and inflammatory arthritis – after years (as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid in March 2020.

When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind.

I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who loves interacting with other humans. But those "friends" are all gone now and the loneliness of

My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.#AnkylosingSpondylitis #Bursitis #ChronicPain #Depression #EhlersDanlos #JointHypermobilitySyndrome

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Ode to My Cruel Master

I was inspired by how much my previous poem, seemed to inspire many of you, The Mighty. It got me thinking about chronic pain and it’s ability to alter our lives. I offer this poem to all the chronic pain warriors… I hear your silent screams, and I see the darkness that shrouds your everyday life 🫶

Pain is impatient, pain is cruel, and unkind.
Boasting of its grip, its reckless pride intertwined.
In its shadows, the world is reshaped, redesigned,
A constant echo, always there, unrefined.

Delighting in the shadows of evil's cast,
Pain’s truth is cruelty, stark and clear.
Attacking, betraying, fostering fear,
Its grip lingers over memories of a peaceful past.

In the depths of its ceaseless cruel dance,
Moments once joyful are stripped of their chance.
Pain lingers, persistent, in every glance,
A silent scream, a stifling expanse.

Pain’s lens, renders the body estranged,
Once a sanctuary, now forever changed.
Fear, mistrust, and memories deranged,
In its grasp, life’s many joys are rearranged.

Yet within the storm, a flicker remains,
Not of love, but of strength, unchained.
For each day faced, and every battle gained,
Is testament to the warrior’s spirit—unstrained.

The world may darken, colours slowly fade to gray,
Yet the will to endure keeps the abyss at bay.
For within the prone sufferer, light finds a way,
A beacon of hope, that pain cannot sway.

In this piercing realm of unrelenting strife,
The chronicle of pain is more than just life.
It is a testimony of resilience: to face the knife,
And finding a way within, the strength to survive.

Image: Francisco Goya, Self Portrait With his Doctor

#ChronicPain #Arthritis #RheumatoidArthritis #EhlersDanlosSyndrome #Fibromyalgia #MyCondition #MightyPoets #MightyTogether #AnkylosingSpondylitis #BackPain #ComplexRegionalPainSyndrome #Endometriosis #InterstitialCystitis #Lupus #Migraine

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New to this Mighty site

I am Katness, or Kat, older adult with ADHD, Ankylosing Spondylitis and Type 2 Diabetes. I have an adult son and an amazing husband. (The kid came first, then hubby applied for the job of step-dude.) We have been a family unit for 20 years now. The #ADHD was a learning curve for my husband, but as my mother told him on our wedding day - "life with me will never be boring!" She also told him "No Returns". A sense of humor is the one thing our family has in abundance. My mom and dad, my brother and I all have ADHD. My dad and mom each have at least one sibling with ADHD or other #neurodivergent challenges. The #AnkylosingSpondylitis I inherited from my father, and it is a royal pain in the back. My back is the main location for the AS to flair up, though I once had a flair up of my intestinal tract. That was horrid. It can also decide to flair up in a person's iris, which us an urgent ER trip. So far, I have not had this happen, thankfully.
I am extremely fortunate that my husband is willing to do 90% of the household chores, and I have a steady salary job that covers all our expenses. So, that's me in a nutshell, though I have a lot of wild stories that are all true, and some even have photos to prove it. 😅
Pic of hubby and me.

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