My son has Ankylosing Spondylitis
It’s been a 6-year journey to finally get to where we are today, and for Zac to be comfortable for me to share his story about living with Ankylosing Spondylitis. We hope that by sharing his story and what we are doing as a family to help him live a life he so rightfully deserves; can help someone, bring light to this disease and inspire people to take ownership of their own health.
As I am writing this I have tears in my eyes, this journey has been nothing short of heartache, frustration, anger, pain and relief. To see your gorgeous son, a part of my heart in pain every day is a mother’s worst nightmare, especially when no matter how hard you try you can’t take it away. It doesn’t make it easy when it’s a disease that not many know about, understand and let’s face it spell or even pronounce. So, from now on I will abbreviate it to AS, makes life so much easier for both of us.
We now have the trifecta of Autoimmune diseases in our family, so I think we are more than done and have kindly asked the universe for no more. In our not so little family of six we have 2 Type 1 Insulin Dependent Diabetics, 4 Coeliac’s and 1 with AS. Myself and my son Alex are the only ones that I guess you could call the abnormal ones in our family not having an autoimmune disease.
With my love of all things about the healthy, mind body connection and my journey to becoming a life and health coach and now celebration coach. We have finally found the right health care professionals who not only validate what Zac is going through but want nothing more for Zac to feel well again. We know Zac will have this for the rest of his life. What we are doing is creating a personal wellness plan that will help improve his condition as best we can, and to create a wellness toolkit that he can draw on when he has flare ups.
Zac has seen numerous doctor’s, specialists over the years, having tried various treatments such as steroid injections, chiropractor, oxygen tanks, anti-inflammatories and pain medication just to name a few. All with no affect, and yet the doctor’s kept wanting to give them to him. I asked so many questions such as looking into gut health, diet, wellbeing, natural remedies etc and not one would even be open to looking into other alternatives. It was all about just treating the symptoms regardless of the side effects. Zac couldn’t take many of the anti-inflammatory medication due to getting sick from them. This led to doctors’ wanting to prescribe more drugs to help with the side effects with it potentially becoming a vicious circle with not even a consideration of what this caused for Zac.
To Zac’s credit he didn’t want to take the extreme pain medication that had been suggested because he knew it would only cause more problems and he didn’t want to have to rely on these for the rest of his life.
Zac just turned 23 and has been struggling with this since he was 16. He has not been able to play the sport he loves, move properly, is in pain all day every day, not be able to go with mates on trips, to finding a job that supports his needs has been difficult to say the least. The frustration of dealing with doctors, the assumptions he’s lazy, to not feel heard or validated. To say it’s affected his life is an understatement.
And yet he keeps on going. Zac is a quiet young man, who has a heart of gold, will help anyone, extremely protective of his brothers and me, loves to coach field hockey (which he is back doing YAY), the best big brother and son you could ask for. Every day Zac gets up and goes about his day with many not realising just how much pain he is in, though we his family know exactly.
It has been hard on Zac’s brother’s, seeing someone they love in pain every day takes its toll.
Pain is unforgiving, and it can change people, as a family it’s been a challenging time for all of us, we each have had our own ups and downs trying to learn how we can best support Zac. What has been amazing through this tough journey is the incredible and inspiring brotherly bond between my boys and how strong it is, they will look out for each other and nothing including AS will break it.
AS affects everyone differently, and for Zac his back and his hips, is where the most pain occurs however it is affecting his whole body. Standing for short periods of time hurt, sitting down is painful so even going out for a coffee is a challenge. Every morning Zac wakes up so stiff and sore he looks anything but a 23-year-old. It becomes a domino effect and the simple things in life we take for granted becomes a chore. AS is somewhat invisible and if you saw Zac he looks like a handsome healthy young man, and this is where people find it hard to process that he has a disease that makes him feel anything but. Even after explaining to people what he has; because he doesn’t fit into their perception of what someone who has a debilitating disease looks like that he must not have it. For Zac to receive validation for his condition from people and this is not for Zac to play the victim card it’s quite the opposite. Has been one of the key factors in helping Zac move forward and not allow this disease to take over any more.
Zac is currently seeing an amazing Integrative Doctor, who looks at Zac as a whole person, thank goodness. We have since found Zac has leaky gut, which is a huge find considering most inflammation starts in the gut. I seriously don’t know why normal doctors don’t look into this more. He is currently taking supplements to rebuild his gut health, support his immune system and help reduce pain. Zac has only just started to use a drug (less side effects and not as harmful as other alternatives) that has been found to help the body heal itself by working on the immune system and helping with pain especially those with Autoimmune Diseases. It’s left field but because Zac is so young we feel this is the best option to try. We will keep you posted on how this is going, but so far it’s looking good.
Zac’s wellness teams consist first and for most us, his family, his integrative doctor, naturopath, exercise physiologists, physiotherapist and osteopath. All are working together and treating Zac as a whole person.
For me this journey has pulled my hearts strings to breaking point, all I ever wish for is for my boys to be healthy, happy, to believe in themselves and chase their dreams. To see one of them not be able to feel and do these things breaks me and what’s more I can’t take it away. Zac told me on his 23rd birthday a couple of weeks ago, that he wishes to feel like he’s in his twenties and not feel 90. I am determined to make his wish come true.
We know our bodies better than anyone and our health is our greatest wealth, we are not a symptom, we are a whole being. This journey has taught me to stand up and take ownership of our health and that of our loved ones.
To be treated as a whole person is what makes the journey to wellness so much more achievable and the chance to heal becomes not just a dream but a reality.
Our health journeys are as unique as we are, not only do we need to listen to our bodies, trust our bodies, but we need to find our personal wellness tribe that will encourage, believe and support us through our quest for healing and health.
I know Zac is well on the way to achieving this and that is something to celebrate.