Acceptance and Transition After an AxSpa Diagnosis

By Julie Vallortigara

3 min read

I am facilitating a course on lifestyle management for people living with long term conditions, with difficult life circumstances, and in need of support from peers and health coaches to set foot on a path to recovery.

When we talk about recovery we don’t mean finding a cure, but rather adapting our lifestyle to our new circumstances and needs. By attending such programs, we can build a toolkit to cope better, discover our strengths and develop our resilience so we can manage setbacks, and initiate change for a better future.

We are a team of health and wellbeing practitioners running these courses together with peer volunteers, to support people to help themselves, identify their hopes for a better life and start implement changes in a supportive, non-judgemental, warm environment. Attendees can share their story, exchange tips and insights. The group setting really works for some people whereas for others receiving individual support from a coach suits them better.

These courses benefit others and myself

Doing both the courses and the 1-2-1 consultations are inspiring and rewarding for me. My own health and wellbeing can benefit from that work. It makes me reflect on my own experience. By listening and supporting these people referred to our wellbeing service, I learn from others’ experiences and their ways to overcome challenges.

So starting a new course is exciting. The first session was about setting the scene for the ten weeks we are going to spend together. We talked about unhelpful ideas or beliefs we can have about our situations. We also exchanged on listening skills, how to apprehend life-changing events and find how we can transition.

The 7 stages of transition

Then we talked about the 7 stages of transition that we may go through, as a model to describe the different ways to react to a change. That made me think about how I went through the massive life-changing event I experienced when I got diagnosed with AxSpa. Here are some of my reflections for each stage of the transition.

Stage 1: Shock

Yes I was in shock after my physical breakdown, not able to think clearly or do anything. I was overwhelmed, barely functioning, surviving, and using the little energy and strengths I had to go to work and then go home.

Stage 2: Denial

I guess my repeated cycles of boom and bust, my attempts to live my life like I used to and convincing myself I could do it did look like a form of denial to me.

Stage 3: Depression

I experienced depression when I was diagnosed with AxSpa as I did not know how to cope with my symptoms. When I was not at work, I was at home, alone, feeling low. My social life went downhill and I needed a lot of sleep.

Stage 4: Acceptance

That step was hard for me, to let go of the past. It took me a long time and I did grief counseling which was helpful. I had to process things and see that I could adapt and get better to fully accept the change and take an active role in my recovery.

Stage 5: Finding out ways to cope

I have been doing that all along my journey living with AxSpa. I keep revisiting my ways to cope and see if I can improve them or find new ones. I find that exercise interesting, stimulating and it gives me hope and confidence that I can live better with my conditions.

Stage 6: Making sense of things

That is a work in progress for me. My diagnosis of AxSpa is HLA-b27 negative and radiographic negative. This is somehow challenging to fully make sense of what happened to me, to understand how I got those symptoms which impacted my life significantly.

Stage 7: Moving on

I am here and I am better! I have made significant changes in my life such as changing jobs, moving home, joining a support group, attending rehabilitation programs. I have moved on from my previous life to a new one I have designed to suit my needs. And I am very grateful to all the people I have met who have supported me in any way to make those vital changes.

How have you transitioned in your life after your diagnosis? Any particular stage of transition resonates with your experience? Please share below 😊

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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maisi Member
Are you still doing health coaching? <inline-mention username="Julie Vallortigara" user-id="2107984"/> 
1. Julie Vallortigara Moderator & Contributor
 <inline-mention username="maisi" user-id="2108559"/> Hello! How are you doing these days? I hope you are having a good start of Summer time 😀 Sorry for my late reply, this late Spring has been rather busy for me... Yes I still do Coaching in Health and Wellbeing. If you have any questions or want more info, please let me know. You can find me here, including contact details: <a href='https://julievallortigara.wixsite.com/mysite' target='_blank' rel='noopener noreferrer ugc'>https://julievallortigara.wixsite.com/mysite</a> Take care, Julie.
LisaMichelle1092 Member
My experience was a polar opposite to yours. I had been dealing with one illness or another since I was 18: chronic migraines, postpartum thyroiditis, endometriosis and fibroid tumors, DDD, type ll diabetes, fibromyalgia, PCOS, severe dry eye, etc. In 2017 I started experiencing a sudden increase in regards to my symptomatology. And then in January 2018 I had my left SI joint fused. We were off to the autoimmune races. By the time the pandemic hit I was essentially homebound and was relieved that I didn't need to push through ridiculous pain to maintain some kind of social life. I knew something was wrong and kept saying so to my doctors, family and bestie who's an MD. So when my new eye doctor casually mentioned that he thought my dry eye disease was likely autoimmune (this was in 2022), I finally had a new direction to look too. I was diagnosed with Sjogren's and PsA less than 3 months later. So for me, there was a great sense of relief. I had already left the workforce years before and won my Disability case so I had no career that I needed to navigate. My kids were already well into establishing their own careers and I was single. For all intents and purposes, it was just another day so to speak. I can't imagine how life-altering this diagnosis is for so many, like you, Julie. And I feel the shock and grief with you and everyone else. With love and support, always, Alisa 
1. Doreen H Community Admin
 <inline-mention username="LisaMichelle1092" user-id="6222695"/>, As always, we appreciate you sharing your experience and challenging journey. Thanks for being a part of this community! ~Doreen (Team Member)
James Hollens Moderator & Contributor
First of all, I think that it is incredible that you are involved in such a course and that it is proving to be so beneficial for others and yourself! The stages that you describe are a carbon copy of what I went through as well! I think that the only difference for me was that finding ways to cope came before acceptance. I was unable to walk when my diagnosis came around so I was putting all of my energy into trialling and erroring things that could give me some relief and mobility back. It wasn't until later when I discovered the online chronic illness community where I realised that I was not alone in this battle and really started accepting my condition. Also, as I was misdiagnosed so many times in the past, it was when the medication for AS finally started working when I finally believed that this diagnosis was the correct one. Wishing you all the best, James (Community Member)