Meeting Our Members: An Interview with Bianca

Anthony from AnkylosingSpondylitis.net recently had the pleasure of interviewing one of our talented community members, Bianca. Bianca submitted a poem in our community story section, titled 5AM: A Poem About Ankylosing Spondylitis. Check out our interview with her below!

Receiving a diagnosis

Anthony: When were you diagnosed with AS?

Bianca: I was diagnosed with ankylosing spondylitis (AS) 7 years ago when I was 41 years old. Diagnosis came after recurrent iritis. As iritis is linked to AS, when the irits recurred my eye specialist and GP directed me to a rheumatologist for further investigation. Then came my AS diagnosis.

The AS diagnosis was the final piece in a health puzzle I’d struggled to find the solution to. From 36 years old (after 3 children) I had been experiencing a lot of back pain. I had been in and out of chiropractors, physiotherapists, and osteopaths offices for years ([they] put it down to strain from carrying young children all the time). But not long after my 40th birthday, I began to experience problems with my breathing. I would hyperventilate all the time. I thought it was anxiety and would walk and walk (as this was the only thing that would settle my breathing). But, I wasn’t feeling anxious. I had a great life. It was tiring of course, with young children, but anxiety just didn’t feel right.

I went to the doctor for my hyperventilating and he prescribed anti-depressants and told me I needed to 'just stop breathing like that'. I didn’t feel comforted by his assessment of my situation and I didn’t take the anti-depressants. The breathing difficulties continued along with fatigue. Crazy fatigue - like no other tiredness I’d ever experienced. Just overwhelming. My brain couldn’t work things out either - I couldn’t plan my day - basic mental processes I’d always found simple I just couldn’t do.

Then I started to experience physical issues with my lower back and my glute. I strained my glute/lower back playing tennis (or so I thought) and it wouldn’t heal. Sometimes it would be fine but other times I could barely walk in the mornings. I had aways been very fit and exercised regularly so I added pilates (and more visits to the physio) to try to fix my back issues. But it persisted and wouldn’t recover. The pain would come and go. I thought I was getting old really young. I remember lying on my lounge room floor (unable to get up due to the pain and exhaustion) day after day just thinking ‘something is really really wrong with me.’ It was very scary.

Then came an inflamed red eye for about 3 months (I thought it was allergies - really bad allergies!). By the time I got to the eye specialist the iritis was so serious he thought I could go blind. Luckily, I didn’t. Then the iritis recurred. Diagnosis came quickly afterward. All of my symptoms were related to the AS.

5AM: A Poem About Ankylosing Spondylitis

Anthony: You recently shared a poem on AnkylosingSponydlitis.net, "5AM: A Poem About Ankylosing Spondylitis". Can you tell me a little about the process of writing that poem?

Bianca: I have journaled quite a bit during my AS experience. But the desire to write a poem came in the early hours of the morning one day. During the first few years of treatment after my diagnosis I was put on anti-inflammatories. They helped with the pain somewhat but didn’t really stop the illness or the flares at their worst. I would wake very often in the early hours of the morning - 3:00 onwards - and have to get up the pain was so bad.

But, the early hours are quite a sacred time of the day. Rumi wrote a beautiful poem about the early hours:

“The breeze at dawn has secrets to tell you. Don’t go back to sleep. You must ask for what you really want. Don’t go back to sleep.”

I felt inspired by Rumi in those early hours to get up and write about AS. “5AM: A poem about Ankylosing Spondylitis” was one example. I used that time to write to purge myself of the pain, the fear, the emotions, the insanity I felt from what was happening to me due to the AS. An AS diagnosis is a terribly frightening thing. I didn’t understand what was happening to my body. I was only learning what this illness meant. I was so shocked and scared. I didn’t know what was happening myself let alone how to communicate what was happening to others. I was trying to make sense of it all.

I also prayed then too. I prayed for help. I prayed for support. I prayed and prayed and prayed.

Coping with ankylosing spondylitis

Anthony: Does writing about these difficult experiences seem to help you in coping with the disease on any level?

Bianca: AS is such a horrible horrible disease. The chronic pain gradually sucks the joy out of life. My only lifeline when my AS was at its worst was finding a way to still see the beauty in the moment. Even if that is a moment of pain and fear and sadness to record words which are poetic and honest and real and which can communicate the rawness of how AS makes you feel was something positive I could find in those darkest moments.

One moment at a time

Anthony: What advice would you give to someone having a tough day living with AS?

Bianca: AS is so deeply personal. A bad day with AS is the worst, that much I know. Anyone experiencing that should just have the space and support to get through that day - one moment at a time - however they need too.

Learning to accept my diagnosis

Anthony: Is there anything else you'd like to say to the community?

Bianca: What I can talk about is what AS has taught me over the last 7 years. For me, AS has been all about learning to surrender. Surrender to the pain, to the needs of your body, to not being perfect, to not even being normal, to not showing up to things, to not keeping up with the Jones’s, to asking for help.

For me, when you have AS you have to really learn to love yourself and accept whatever you can manage is good enough. Life itself is enough.

Community helps with that.
Listening to others' stories helps with that.
Knowing you are not alone really helps with that.