One Year Diagnosis Anniversary

On the 30th of January, it will be one whole year since I was diagnosed with ankylosing spondylitis (AS). (I’ve attached an article below which explains what AS is)…

Of course, I am not happy that I got diagnosed with this illness; it has brought a complete upheaval to my life. I’ve lost my job, and my career plans have gone out the window. I have lost friendships. Pain, isolation, and anxiety have been steady companions on this illness journey of mine.

Yet, I also celebrate that diagnosis because, along with it, came radical acceptance—something I had not felt for a very long time.

I had been living with this illness, unbeknownst to me, for many years, possibly for over a decade. I had multiple health issues and fluctuations in my energy and mental health during this time, with very little explanation for them. With this came great distress.

Because I didn’t know what was causing these problems, I didn’t know how to help myself. I couldn’t move on. I was stuck in a toxic limbo land. I either had to completely succumb to these issues or try to work through them the best I could.

At first, I tried the latter, plugging on trying to be ‘normal’ during the day, putting on a brave face to the world, yet in the evenings behind closed doors I would collapse in a near state of exhaustion and overwhelming depression. Survival mode kicks in, and at first, you don’t accept that you can’t continue in this state. You claw your way through each day. You adjust to the new normal. You start to believe that you are just weaker than everyone else. You accept that you are broken in some way and that you are a failure.

I felt incredibly isolated because I had no way of communicating what was wrong to those around me, so I kept it hidden most of the time. The feelings of shame and guilt start to burrow their way into your bones, becoming the deepest part of you.

Of course, I tried to seek help via doctors. Sometimes they would throw me a lifeline; a test here, a blood test there to appease me. Throwing me a rope of possibility with an explanation; hormones, you say? It’s just anxiety; yes, you mentioned that before. But none of those explanations quite fit. It didn’t explain all the symptoms. The usual treatments such as birth control and anti-depressants didn’t work, not for my pain at least.

Without proper explanation comes doubt. I doubted myself countless times; was I really sick? Was it all in my head? Was I physically disadvantaged in some way, or was I just less mentally strong and capable compared to most people?

There were times I was adamant that something was wrong, and I went to the doctors armed and ready to fight my case. But there were also many other countless times when I just accepted my fate. It was me, it was my fault that I am like this.

I look back, and it really saddens me to think of the person who used to think that about herself. She had so little self-esteem. She really did think that she didn’t deserve a rich, healthy, and meaningful life without pain and confusion. She hated herself. She was disgusted at how weak and pathetic she felt.

I wish I could go back to that version and just wrap my arms around her. I would tell her that everything will be okay.

In March 2023, I couldn’t pretend that I was okay anymore. My body quite literally gave up on me. I had no more energy left in me. Forcing myself out of bed to work was so difficult; I was in tears most mornings. I was so tired; both mentally and physically. My depression and anxiety were at an all-time high that I barely left my house other than for work. My back was riddled with pain, so much so that I was limping around wincing at every step that I took. My fingers were stiff, and I couldn’t unfurl them from a tight grip that they had contorted themselves into overnight. I couldn’t focus on my job. I didn’t want to socialise; I just couldn’t bear having to fake a smile anymore. I was becoming bitter, angry, and didn’t enjoy much of anything. Life became very bleak and monotone.

One morning, I looked down at my hands, and I just kept repeating to myself, ‘This is not normal’. I was saying it more to try and convince myself at this point. I honestly didn’t know anymore what was normal for a 30 something-year-old woman to feel inside her own body. Perhaps we all felt this way, but others were better at hiding it?

But something deep inside me told me to seek help. I guess it was a survival instinct that refused to give in. So I went to the GP that day. For one last try.

She was a new GP, someone I hadn’t come across before. To my surprise, she believed every word I said. She never doubted me or questioned me. She said she was sorry that I felt so poorly, and she immediately sent away a referral to the rheumatology department at my local hospital.

‘It sounds like this is some type of inflammatory arthritis,’ she told me with a refreshing sense of honesty.

A spark of hope ignited within me that day.

One year later, after countless tests and appointments, I got the diagnosis of ankylosing spondylitis.

That diagnosis gave me my life back. Which sounds strange, I know.

That diagnosis was confirmation that I was not insane. I’m not kidding. I was at the point where I was really starting to question my own sanity and my own reality. I did not trust myself and the world around me anymore. How could I? It was like the world was telling you that everything was white when you saw black.

Your gut tells you something is desperately wrong, but everything and everyone around you tells you the opposite.

And when that starts to happen, when that level of unravelling starts to happen within your own mind, it’s very hard to stop it. It’s a very scary place to be, and I never want to go back to that dark place.

I never felt safe. My nervous system was on constant high alert, and the painfully ironic thing was that I knew all that stress was further contributing to my unravelling and ill health, but what could I do?

I got my diagnosis over the telephone, and when I hung up from that phone call, I literally cried tears of pure relief. They clarified what the illness was, and each one of my symptoms could be explained.

I sobbed for what felt like an eternity that day, and I kept repeating to myself,

‘I knew it. I knew it’.

When the wave of relief passed, of course, came sadness and grief. I suddenly had to admit to myself that I needed help. I needed to change my whole way of living. I couldn’t continue on the path that I was on.

Again, that is a scary place to be, but at least there was now a way forward.

That diagnosis gave me the permission I needed. Not permission from other people, but from myself. Permission to give myself the much-needed care that I deserved.

And that was the first step.

It took me many months of self-reflection and therapy to convince myself that I deserved care.

It’s taken me this whole year to really believe that I deserve to rest and recover without guilt. It’s taken months of therapy to unravel all that hurt and confusion.

Only then could I really take on the mammoth task of actually starting to properly heal. And I don’t mean heal as in a cure—sadly, there isn’t a cure for this illness—but to heal in the sense of living the fullest life I can in the body that I have been given.

And that’s why a diagnosis can be so incredibly powerful. It not only gives us access to more support, medications, and understanding, but it can also give us back acceptance of ourselves. Permission to care for ourselves. A path back to trusting our own instincts again.

I may not have my life sorted out yet, nowhere near. But this past year, since diagnosis, has given me so much.

I now trust in myself again. I’ve allowed myself to lean into creativity and writing because that is what my gut is telling me to do. I’m learning to trust my body and let it rest when it’s telling me to. I now have the confidence to venture outside and connect with others again.

It also feels quite poetic that nearly a year on from the diagnosis, I’ve started to take my biologic medication for the first time. So far, I haven’t had many side effects. I’m learning to trust the process and to see what happens. If it works, great. If it doesn’t, then I will cross that bridge when it comes to it.

So on the 30th of January, the anniversary of my diagnosis, I am going to buy myself a cake, I will put a candle in it, and when I blow it out, I am going to wish for myself all the things that I never dared to before the diagnosis; a better life for myself.

And you do too- don’t give up hope!

How about you?

How did you feel when you got a diagnosis of your illness? Are you still on that painful journey to finding a proper diagnosis- how is this impacting you both mentally and physically? What would a diagnosis mean to you? Has getting a diagnosis helped you get support, or did you not get what you had expected/hoped for? What was that first year like after diagnosis- how does it compare to now? Any advice for people still looking for a diagnosis, or for anyone who has just been given one?

I would love to know in the comments below.

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Sending healing thoughts to you all. See you next week!

Lots of Love & Hugs,

Amanda x

P. S I also want to say a big thank you to everyone who offered advice and well wishes last week when I was starting my new medications. I was so nervous, but all your lovely comments really helped to get me through.

It was nowhere near as scary as I had built up in my head, it never is right? I will do another blog about it in a couple weeks time, after my second injection, to let you know how it’s all coming along so far :)