Betsy

Name: Betsy
Location: Rochester, MN
Age: 32
Diagnosed with Ankylosing Spondylitis at age 31

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How has your condition impacted you?  It's still hard for me to take in that Spondylitis is something I have, and am going to have to deal with going forward. I was in denial for quite some time. I hoped that I was just misdiagnosed again. It has only been recently that I have come to a point of acceptance and understanding to tell people outside of my intimate circle of friends and family. I am learning who my true friends are and that not every one can handle my new reality. I am learning that I have to create balance in my life and carefully choose how I spend my energy. I am constantly working to reframe my grief for the things I cannot do, but instead look for new ways to find joy. My condition really has impacted how I view and prioritize my life, more than the obvious physical obstacles. Inflammation in my sacrum extends into the lumbosacral plexus which causes shooting pain down my legs along with localized sacral and pelvic pain. I am stiff in the morning and quite fatigued, which is difficult as a mother of 2 young boys.

What would you like for other people to know about your condition?  First, if you have not heard of this disease check out the following website to learn the basics: www.stopas.org. Also, the scientific understanding, research, treatments, and prognosis are constantly evolving with this disease. Although I was initially shocked by my diagnosis, which sent me into a deep depression, I am now grateful for the diagnosis in that at least I don't have to keep wondering what is going on, and of course treatment designed for the disease you have is always better than treatment for something you don't have! I do have hope that advances will slow progression or even bring a cure.

What would you tell someone who is newly diagnosed with your condition?  There is hope. There are many approaches to treating this disease.  I think having faith in your physicians and care team is essential. No question should be disregarded and you need to seek the treatment approach that you are comfortable with.

I am a mother of 2 young boys and was unable to accept the textbook answers I was getting from the first rheumatologist I saw. I was uncomfortable with a symptoms based approach. So I did my research, looked at clinical trials, read endless scientific journal articles, and found a rheumatologist who had the approach I desired, to treat the disease systemically and try to slow or halt progression. There are endless treatment and lifestyle choices to explore.

When I shared my diagnosis with my aunt, she sent me a beautiful note. I hope this excerpt helps you as it has aided me in staying grounded on even the most painful days, “I believe that God gives us life with a purpose attached. And that purpose, whatever it may be for each of us, still remains no matter the circumstances. And sometimes difficult circumstances can even bring our purpose into sharper focus.”

Thank you so much Betsy!!

(And thanks to Maya for introducing us!)

Maya

Maya
New York City

Diagnosed with Undifferentiated Spondyloarthropathy at age 15

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How has your condition affected you?  It wasn't easy to live in pain through my childhood and my most formative years - it's not easy today and it wont be easy tomorrow. I've gone through my share of denial, grief, anger and fear and I'll go through it again. But the difference now is that I've learned to see my illness as just part of me - the person I'm proud to be. Being in chronic pain has made me search for the the small joys: the people, animals, places and things that I can still enjoy every day. It begs me to accept the ups and downs and to roll with the punches. It has also taught me to accept myself on a different level and, instead of dwelling on what I can't do now, take pride in the things I've overcome. I've called my disease a "built-in friend filter" because the ones who are left standing beside me are the ones who are meant to be there. I've also come to know myself and others in a much more intimate way.  Looking forward, Spondylitis has also helped me recognize my calling for social work and helping children, young adults, siblings, parents, and families as a whole cope with the challenges posed by chronic illness and disability. I don't know that I would have found this purpose without my disease.

What would you like for other people to know about your condition?  Living in pain every day is something that's hard to describe, but thank you for asking me to try. Sometimes I want to talk about it and sometimes I don't, but usually a simple and sincere, "How are you feeling today?" goes a long way. In fact, if you're wondering anything about my illness, it's okay to ask (it would show me you cared to know). It means so much when you come to understand the unpredictability of this disease, realizing that things can change from hour to hour and that I can't always keep plans. It means even more if you're content in skipping these plans and just being with me. It's hard to see you sad for me, so try not to feel that way. Instead, focus on the things I can still do. But really, it's the littlest things - the every day things - that can mean the most... carrying a heavy bag when you see pain in my face, walking slower than normal, or even opening that jar that I swear I loosened for you ;) 

What would you like to tell someone who was recently diagnosed with your condition?  Congratulations on having a name and reason for your pain and for taking a crucial step toward feeling better. Now make sure you have a doctor who will work aggressively to slow or stop the progression of the disease. After all, we're lucky to live in a time with medications that do just that. Don't just take his or her word for things. Actively search for alternative therapies, work with this doctor, but still be your strongest advocate. When the diagnosis settles in more, you have a choice to make: do you make this disease an enemy or just another part of your life? Try not to fear accepting  "letting the disease win" - you have enough to fight without fighting yourself. Allow yourself to feel proud of the simple fact that you're living in the face of pain. Really listen to yourself and it's likely you'll become self-aware in ways that others could only imagine. You'll also develop great empathy, recognizing pain in peoples' faces. This connects you to humanity and your fellow sufferers on a deeper level, so talk to them. You don't have to do this alone. Spondylitis will make you appreciate the "good days" that much more. It will force you to slow down and appreciate the people who will slow down with you. Most of all, try not to beat yourself up because ups and downs are the name of the game. Illness doesn't have to be the end of anything, so focus instead on all you can still do and get ready to surprise yourself with your own strength. 

  

(We met a super cute puppy during our shoot.  Hi Randolph!)

Please take a moment and check out Maya's wonderful blog, Loving with Chronic Illness.

Thank you so much Maya!!