Diagnosed With A Chronic Disease at 19: My Initial Thoughts

Life isn't a race and your pace, whatever that is, as long as it works for you, is the perfect pace. 📷 @littlearthlings

So yeah… this is, perhaps, the biggest plot twist of my life thus far.

I never expected it. I mean, you can’t really expect to be diagnosed with a chronic illness, but this really did come out of nowhere.

And to be honest with you, It’s very daunting. Everything has happened so fast and it hasn’t really kicked in that this will be my life from this moment forward.

So… what’s the diagnosis?

Ankylosing Spondylitis

What’s that?

Don’t worry, I’m still figuring it out myself.

In a Nutshell…

What is it?

Ankylosing spondylitis is a disease which causes inflammation and pain in your spine (backbone). Early symptoms often include back and neck pain, which is usually worse early in the morning and when you first get out of bed. This type of back pain is worse after rest and improves with exercise or activity. It can also affect other joints such as the shoulders, hips, knees, ankles and the joints between your ribs and breastbone. There may also be symptoms away from the spine, including bowel irritation and sore eyes.

Who does it affect?

Ankylosing spondylitis affects about 1–2% of Australians. The disease usually first appears between the ages of 15–40 years and is about three times more common in men than in women.

What causes it?

The exact cause of ankylosing spondylitis is not known. It seems that in almost all cases, the disease runs in the family, particularly in people who carry the HLA-B27 gene. However, only about one in every eight people who have the HLA-B27 gene will develop ankylosing spondylitis, so having the gene does not necessarily mean that the disease will be passed on from parents to their children. For people who carry HLA-B27 and have a parent, brother or sister with ankylosing spondylitis, the risk of developing the disease is about one in five.

How does it affect people?

Ankylosing spondylitis affects different people in different ways. A common early symptom is deep aching in or across the buttocks. This is due to inflammation of the joints between the tailbone and pelvis (sacroiliac joint). Pain in the front of the chest or between the shoulder blades is also a common early symptom. Other parts of the body may also be affected by pain, stiffness and swelling. These include the leg joints, hips, shoulders and the places such as the heels where muscles and tendons attach to your bones (called enthesitis).

Research courtesy of Arthritis Australia

 

TL/DR?

It’s an incurable form of arthritis in the lower back, which can also affect basically any other part of the body.

(Yep, I have Arthritis at 19)

The Lead-Up

I’ve never experienced bad back pain before. Sure, maybe I’ve torn a muscle or ligament or whatever in the past, but that has been the severity of it.

This is why the diagnosis came at such a shock.

Arthritis is something I always thought of with old age or perhaps retired sportsmen or dancers, NOT your average teen gal whose favourite form of cardio is booty-poppin in the clubs.

It started off as a striking pain in my glutes, which I didn’t think too much of at the time. But after two or three months, I was bloody sick of it. After probably leaving it a little too long, I decided that it was time to see the doctor.

The Diagnosis

The doctors’ appointment was the first time I had ever heard the word “Ankylosing Spondylitis”, but I didn’t really take much notice. I couldn’t even pronounce it myself.

“I’m pretty sure I’ve just done a muscle”, I reassured myself.

This was all I could think of it as, which I thought was fair considering my previous medical history – no records of back pain, or in fact any pain similar at all.

But after an exhausting amount of blood tests and x-rays, I received the news that I was certain I wouldn’t.

The next doctors’ appointment confirming my disease was the scariest experience ever. My doctor discussed my “options” for pain management and reminded me that this is going to change the way I live my life from this point forward. AS is an expensive disease to have and I was advised to look into being covered by more extras on my healthcare to avoid drowning in medical bills.

I usually go to my doctor’s appointments alone, but god I wish I brought my mum along for that one. I left the appointment in tears and cried for the majority of the night.

I just didn’t expect it. The symptoms leading up were just too common to be considered as a lead up to a chronic illness and I was caught completely off guard.

The Months Following

I'll be down here if you need me...; I may have my eyes closed but still fully awake, I may stare ahead blindly while I'm still fully aware, & I may just need silence to remain calm during the MS storm til it subsides - hopefully.

The weeks following my diagnosis were tough. I would randomly cry after thinking about it. Everything was so daunting. The disease itself isn’t extremely life-threatening and that’s not what scared me; it was the pure shock factor of how fast things went down-hill.

Chronic illness isn’t something to be taken lightly either, I mean, it’s a lifelong health condition after all.

I found it to be a bit of a grieving process at first. I dealt with 5 out of 7 of the stages of grief and that’s what I related to at the time. Sounds dramatic, sure, but it’s how I felt.

It went from Shock > Denial > Anger > Depression > Acceptance

I took it easy for those few weeks/months and slowed down my regular schedule. I had to stop physically working for my business because the pain was flaring up too frequently and I didn’t know how to manage it. I’m so lucky that my partner was kind enough to fill in and work nearly every second night to cover what I couldn’t do. I’m so lucky to have him.

My mental health was pretty bad too, but I was warned that this could happen. The initial shock factor made me feel really uneasy and numbed to any emotion for a long time, but I’ve pushed through that stage luckily enough.

I found that a lot of my friends didn’t reach out to me about it, but I think it’s because they didn’t know how/thought it was too personal. I understand why, but what I yearned for at that point was to let all of my bottled thoughts out. I felt so alone at the time, in fact, I still do feel very alone. AS only affects 1-2% of Australians and an even lesser amount of Australian females, so I didn’t have anyone to confide in like I did with mental health issues.

Reach out to your friends :)

I made it my mission to connect with people who understood. I found a bunch of online AS support groups from Australia and beyond, but they just managed to just scare me even more. The majority of these people have more severe and developed cases of the disease and I’m at the lower end of the spectrum as I’ve just been diagnosed. They were talking about all of these heavy medications and fancy specialists and it managed to completely freak me out. I stay away from those now. Perhaps they’ll be of help when the disease progresses.

What I’ve Learnt Since My Diagnosis

I think that my AS will be a topic of frequency on my blog now. My thoughts and words now are only initial and will change over time. As of my current time of writing, I have been seeing Physiotherapists and Exercise Physiotherapists and learnt a bunch of daily stretches to help my back and leg pain. I’m pretty bad with doing it everyday, but that’s something that I hope to improve with time. I will also be seeing a Podiatrist soon to receive orthotics for my runners and a Rheumatologist to assess what options I have medication-wise.

I’m also learning about what I am and am not capable of at this point of time. The pain from this disease works sporadically and flare-ups can’t really be triggered by anything, I just have to wait and see.

Walking short and long distance is usually a no go, which is frustrating when I want to go shopping or walk along the beach (which I never wanted to do before I was diagnosed, but for some reason want to do all the time post-diagnosis?). Some days it’ll magically be okay, but others it won’t.

The words “trial and error” are now in my everyday vocabulary since being diagnosed with AS. It’s what best describes my learning and lifestyle changes and they’re also words that my personal trainer uses all the time with my workout schedule.

After two months into Personal Training, we still haven’t been able to figure out a somewhat interesting cardio regime. I can only do the rowing machine, bike and step-ups without pain. Squatting is painful and doing exercises that require weights whilst standing are a no-go as well. But we are learning what is okay and what isn’t with the power of trial and error.

Lowkey grateful that I medically cannot do burpees though…

I’ve also noticed that I get very fatigued after regular, everyday activities. I’ll always have to sit down for a breather after a shower and will want to reduce shopping trips or errands to the bare minimum amount of running around. My body gets exhausted a lot quicker and easier than it used to which is such a curse. I’m so young but yet feel so old.

But I know that with time, I’ll learn more about my abilities and restriction. For now, I’m just making sure to let employers, friends, family and whoever else necessary that this is something that may disable me from doing things I used to be able to do with ease.

It’s devastating, but it’s also my reality now. I’m also so lucky to still be able to do these things and not be completely disabled and I could my blessing every single day for that. Things will be okay with time and I look forward to the positive achievements my AS will bring.

If anyone else is suffering from AS or another chronic illness, please please PLEASE reach out to me and tell me your story! I am so intrigued by the world of chronic illness and I want to share as much awareness as possible. Being diagnosed has made me completely open my eyes and regret not paying as much attention to chronic illness management and awareness. It’s natural to not be aware when you’re not directly affected, but my new journey has made me want to rally for more acceptance, especially within invisible illnesses like mine.

2 thoughts on “Diagnosed With A Chronic Disease at 19: My Initial Thoughts”

  1. Wow! Such a massive event to deal with for one so young. Life sure can be challenging. Thank you for sharing your very personal journey so far and I wish that you find thecalm and the courage to manage your newly altered future. Keep loving, laughing and living life to your best ability. To be continued.

    Liked by 1 person

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