What Being Dynamically Disabled Means to Me

By Sarah Lee

Last Updated:

2 min read

After 16 years of living with a dynamic disability, ankylosing spondylitis, I am only just scraping the surface of learning what it means to me. A dynamic disability is a condition that can fluctuate significantly from day to day. Sometimes I have no symptoms, and sometimes I am completely impaired.

Coping with pain is difficult for anyone, no matter the age, so when it came to chronic pain, of course that was a challenge. But as a child, it didn’t emotionally impact me in those present moments. I didn’t really think about how others viewed me until I got older.

Ankylosing spondylitis remission forced me to revisit what being dynamically disabled means to me

I spent eight years in remission. During that time, I began to forget what it felt like to live in constant pain. I forgot about how I'd need to adapt to situations whilst living with that pain. I also hadn’t experienced anyone questioning the validity or inconsistency of my illness.

Once I started flaring up again, I had entered a whole new chapter of my journey with dynamic disability. I now had to learn how to cope while tending to my responsibilities and with the opinions of others. I had to reassess what it meant to be dynamically disabled and how it will impact my life as I work toward personal goals.

I’m still learning how to navigate through and cope with other people's opinions of “not looking sick”

I’ve only recently learned how much I have to build up a thick skin. Sometimes even those who I consider very close to me question the validity of my symptoms or their inconsistency.

Society has put the word “disabled” into such a tight box. More often than not, people lack the open-mindedness to understand that being disabled doesn’t look one specific way. I’m learning the importance of educating those who are questioning this, rather than getting defensive and feeling victimized.

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Remembering that I don’t have to justify when I choose to use my mobility aid

While it's important to educate others to advocate our conditions, remember that we shouldn’t have to defend ourselves or justify how we choose to cope. Many individuals living with dynamic disabilities like ankylosing spondylitis require mobility aids depending on how they are feeling.

I have used my wheelchair for bad pain days. I have also used it to prevent future burn-out so I can save my spoons for other important tasks that day. Either way, I shouldn’t feel the need to justify why or how I am choosing to use my mobility aid.

What I wish healthy and able-bodied individuals could be more understanding of

The quality of my illness doesn’t change just because I look “better” to the naked eye. Nor does it change because I decided to put effort into my appearance that day. The only thing that changes is how I choose to show up, which can fluctuate depending on my energy levels or level of frustration.

Whether I’m dressed to the nines or wearing sweats in bed and on my fifth day of not showering, I am still ill and still struggling. I am allowed to choose how I spend my energy or where I put effort. I owe it to myself after years of living with illness to change my mind or change how I want to cope, just as everyone else on this planet is entitled to do so.

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captainwacky Member

So I'm just finding this series of articles from an email I got. It's interesting, I think to some degree there is a "gendering" of how we relate to this. Like reading this, while I definitely relate, there's a part of me that just sort of recoils, but I've always had it reinforced to never complain or appear weak. When I do try to explain, I always feel like I have to be careful to appear strong in how I handle it, because it's been my experience that people will hone in on a sense that you are making excuses or "complaining." One small element I would disagree with-"The quality of my illness doesn’t change just because I look “better” to the naked eye. " Well... I mean if I'm obviously limping and in a lot of visible pain, then yes, i'm worse that particular day, and if I'm moving better, it usually is a better day. I would express this sentiment a little differently, that external appearance is not a COMPLETE indicator. There's a pretty big variable range between low visibility states. And generally, if I'm even capable of putting effort into my appearance, I'm not at my worse. But I'm thinking maybe the author means like, if they go through effort to make themselves up, and they "look better" it doesn't necessarily mean they're feeling better. I've often found language can be really tricky when it comes to "dynamic" disability (love that term). Like since there's almost always some degree of discomfort, communicating the very large range of states can be tricky. I've thought that in terms of communicating to family or what not, a rough scale mighr be useful. Like a 1 to 10 or something to give a rough idea of where one is at. Or maybe a bigger scale. Of course there's also the complexity it isn't just one thing, but a a number of interacting factors.
1. Kathy.Smyser Community Admin
 
 <inline-mention username="captainwacky" user-id="10035867"/> Thank you for being part of the community! You make some interesting points. I also like the phrase dynamic disability over invisible disability. All the best, Kathy (Team member)
judma62 Member

I've with this diagnosis for 18+ years but had so many unexplained symptoms and questions for years prior. I too randomly have had flares and remissions and would periodically use a cane. I would literally cry at times from insane pain just from walking. I kept my crying private because even my own family questioned the validity of my diagnosis and symptoms due to periods of remission. My mental health suffered because of the doubts from outsiders and even family! Ironically some of them (family) are now experiencing symptoms of inflammatory arthritis and it's eye opening for them and for me. This article is so helpful and important! 
1. Kathy.Smyser Community Admin
 
 <inline-mention username="judma62" user-id="10035523"/> I am so glad you found our community. You aren't alone in having trouble with family members understanding the ebbs and flows of AS. One of our health leaders wrote<a rel="noopener" href="https://axialspondyloarthritis.net/living/family-advocating"> this article </a>about a similar experience and offered some suggestions for better communications with loved ones. You may find it interesting. All the best, Kathy (Team member)
dmcclellan Member

I have added dynamic to my definition of being invisibly disabled. Great article, hitting a lot of point that could be educational to most people. As I remind myself that I wasn't aware until I became disabled myself.
Anna Samson Member

Hi Sarah, This is a great article! I especially loved the part where you discuss mobility aids and how you don't need to justify how or when you use them. It really resonated with me as I often feel burdened by how my mobility aid usage will be perceived and, in turn, how my disability will be perceived. This has been reassuring. I don't have to explain why I use my mobility aid or why or how often or any aspect of it. While I know this, it is something I forget a lot so, thank you.
Julie Vallortigara Member

Hi Sarah, I like your use of the label 'dynamic disability'. This is interesting and refreshing to put it that way. It does include the dynamic character of AxSpa with the unpredictability, good days / bad days, and also the evolution of the condition with time. Also, I agree with you about the disability being a 'tight box' where a lot of people with chronic diseases, living with chronic pain and chronic fatigue, don't fit into that box. That's a real shame and there's a lot of work to change that. As you say, education is key to make people understand better what it is to live with such disability. And also, I think we need to raise awareness and campaign so it's better recognized by authorities, to be untitled to receive more support, financial help from governments, all this to live better with our condition. Take care, Julie.