Have you ever watched the movie “Finding Nemo?” If you have, you might recall the scene in which Dory, the optimistic, forgetful, and friendly fish, tells her newfound fish friend Marlin, a clownfish who just lost his only son, Nemo, to “just keep swimming.”
Dory’s simple three-word phrase reminds us to hang in there, to keep trying, to not give up, and to fight when we face adversity.
My name is Janneke Phung, and I have a relatively recent diagnosis of ankylosing spondylitis. For decades, I’ve struggled with pain — neck pain, back pain, headaches, sacroiliac joint pain, temporomandibular joint (TMJ) pain, the list goes on.
I went to the dentist for TMJ pain, but found no relief. I sought acupuncture for back pain, but the pain persisted. I went to physiotherapy for neck pain, yet my aches continued. I saw my family doctor for the headaches, but the drugs piled up and the pain wasn’t masked.
Eventually, I found significant relief for many symptoms with low-impact chiropractic care, but I knew something else was wrong and still unexplained. As I look back at my calendar from several years ago, I had weekly doctors’ appointments in an effort to find out what was ailing me.
If you are reading this because you are facing adversity in the form of pain related to a rare disease, such as ankylosing spondylitis, I encourage you to stay here and settle in — you are understood. Perseverance when facing a disease like ankylosing spondylitis takes extreme courage, strength, and determination, no matter the type of treatment you choose. It helps to know that you are not alone in the struggle.
The beauty of Dory’s personality is that she stands by her friend Marlin during his time of struggle. (In fact, I bet he couldn’t get rid of her even if he tried!) The journey is difficult, but Marlin is never alone.
If you are reading this because you love someone who is facing a rare disease diagnosis or struggling with a misdiagnosis or a lack of diagnosis of physical pain and anguish, I encourage you to stick around as well. Your friendship, loyalty, and support in difficult times is priceless and rare, and so helpful!
The journey is long. For many of us, it takes years, or even decades, to receive a diagnosis of ankylosing spondylitis. For years, we suffer physically (have any of you spent hours awake at night in agony?), mentally (have you ever wondered if the pain is “in your head,” or worse, a doctor has suggested that?), spiritually (“why does God allow such pain without answers?”), etc.
Then, when we finally receive a diagnosis, we are overcome with emotions, including grief (I am officially no longer a “healthy person”), fear (it is a disease that “progresses,” after all), sadness (how will this affect me for the rest of my life?), relief (a starting point for treatment!), validation (Yay! I didn’t imagine all my unexplained pain!), and determination (how will I fight this?). This disease sticks with us for life, and we have a choice to make: Keep swimming or drown.
Go and watch “Finding Nemo” and let me be your Dory. “Just keep swimming! Just keep swimming!”
I look forward to sharing my ankylosing spondylitis story with you over the next while. You are not alone. The ankylosing spondylitis community will help keep you standing!
***
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
Janneke Phung’s style of writing is charming. And her message is what we AS patient’s need to hear…just keep swimming. I’ve been “swimming” with AS for 5o years now. Lost 2 husbands along the way and an adorable mother for whom I cared for 14 years. I wrote a book about loss primarily because I had to come to terms with my grief, but if I had not exercised every morning and every night, 7 days a week, I wouldn’t be swimming. I would have drowned. Keep swimming people. If I did it, you can do it.
Thanks for chiming in, Jeanette! The journey of AS is difficult – yours made even more difficult with your significant losses. I’m sorry! The fact that you kept swimming (by exercising and writing) is a testament to your courage and strength.
Yes! As a chronic pain sufferer, different diagnosis, and this hits home. I totally sing Dory’s little mantra in my own head too many times to count. Because as the post said, it’s a simple saying but packs so much weight to it!
Irma, thanks for stopping by and dropping a note! Keep singing…and swimming! 🙂
So good to see a positive article about moving as apposed to the latest drug. I am 65, diagnosed with AS at 22, and am lucky that my passion is dance. Am currently studying for a MA in Dance and Somatic Wellbeing at Univeristy. I don’t take any drugs but do have a daily movement practice and have managed to control other symptoms with diet. I did find some research on Professor Alan Harbringer who suggested that starch affects AS so I try and keep to a lowish starch diet. Thanks for the positivity and humour, much appreciated.
Anne, I am always so encouraged when individuals who have lived with AS for as long as yourself chime in! It’s people like yourself who inspire me to manage my AS from a less main-stream perspective. Movement and diet (yes, based on research done by Professor Alan Ebringer) are where it’s at for me! I look forward to sharing more of my story! All the best to you 🙂
Love this Article! I’ve been living “swimming” with A.S. Since 2010. Thankful my husband and family are Amazon supportive. There are a lot of fish in the sea that don’t see this invisible debilitating disease for what it is. I gave up on trying to make others understand. I am thankful for the spondys like you that communicate and raise awareness.
Thanks so much, Jennifer, for your kind words. I think we understand each other! (Although, I wondered what ‘Amazon supportive’ meant. I thought maybe it was some awesome expression I was missing out on. I Googled it and only articles about supportive bras popped up so I am guessing your ‘amazingly’ got autocorrected. HAHA!). My next column will be a bit more about my story and the invisibleness of Ankylosing Spondylitis. I hope you’ll come back to read it and that it will help you feel understood and less alone.
Hi Janneke. You are truly a very brave and determined woman. I have nonradiographic axial spondyloarthritis with peripheral symptoms, too in my feet and ankles. This condition developed for me after a heart transplant when I was 61. It has been a tough journey for 4 years to find a diagnosis and anything that helps. I agree that chiropractic treatment to help loosen fascia is helpful. Also I walk at a moderate pace everyday for 2 miles a day and do 45 min of stretches every other day.
Is there any “magic bullet” meaning treatments, devices medications that you have found that I do not know about? My pain is worse at night with a very stiff neck and headaches.
Have you ever tried a biologic? I cannot take nsaids or CBd oil. Have you found any natural or herbal remedies for the inflammation that help you? Thanks
Lynne
Wow…you’ve been through a lot. A heart transplant?! Amazing! I’m sorry to hear that the journey has been tough. Good on you for being so active as I am certain it helps your situation. I wonder how many miles I run after my kids every day? 🙂
When I discovered that I was, most likely, dealing with AS my wait to see a rheumatologist was almost half a year. That was too long for me to sit around and do nothing as I couldn’t be the wife/mom/friend I wanted to be. I wasn’t going to have access to biologics until seeing her. For me, a pivotal moment was when I joined a ‘Low/No Starch Lifestyle for AS’ Facebook group as it gave me something to do as I waited to see my rheumatologist. I went all-in and I’m getting great results. That’s just my experience though 🙂 By the time I saw the rheumatologist there was no longer a need for biologics. I did take NSAIDs for some time but no longer do. Yes, I did try CBD oil but didn’t get the results I was hoping for.
Thanks, Lynne, for engaging. All the best to you!