In this guest blog, Louise shares her experience of managing Ankylosing Spondylitis (AS) while pursuing her career. Diagnosed in 2019, AS introduced unforeseen work challenges, prompting her to seek a better equilibrium. The pandemic's remote work offered a brief respite, yet returning to the office brought new obstacles. During a work hiatus, Louise discovered Yoga for AS, which provided solace and effective stretching techniques. Collaborating with her employer and NASS, she implemented adjustments like flexible hours and self-care routines. Her story underscores resilience and the importance of community support in overcoming AS's impact on her professional path.
This also applies to Axial Spondyloarthritis (axSpA), Spondylitis, and any other form of Spondyloarthritis.
Contents
Introduction: AS Diagnosis and Career Impact
Work during COVID: Remote Challenges and Changes
Returning to the Office: Confronting New Realities
Yoga for AS Support: Navigating Flares and Fatigue
Workplace Adaptations: Flexibility and Honesty
Introduction: Sacroiliac Joint Pains During Pregnancy
I suffered my first chronic sacroiliac join pains whilst pregnant in 2010. I was diagnosed with AS in February 2019.
The Work Struggle: A Solicitor's Story
The greatest impact of AS has been on my ability to work. I have been a solicitor for almost 24 years. I’ve invested heavily in a career where success is measured against output.
Since 2005 I made a number of career moves within the profession seeking a better quality of life and less stress not knowing that I had AS and it was the problem. By the time of diagnosis, I had already begun seeking changes in my current job not realizing why I needed them.
Unseen Benefits of Remote Work During COVID
Home working during COVID masked many of the challenges I faced. No travelling for work, less energy spent commuting, online meetings and an opportunity to really rest at lunchtime all made my life easier.
Confronting Reality: Returning to the Office
However, as workplaces fully opened up again in September 2022, I was forced to confront the reality that I am no longer physically fit to work in the office 5 days per week nor could I work the way I used to.
Devastated, I had a period of absence in December 2022 and I was out of work for two months. I felt like a failure and had lost confidence that I was able to do my job.
Yoga for AS: An Anchor Through the Struggle
Thankfully I am a member of Yoga for AS. I joined my first Yoga for AS class on a cold miserable December morning in 2020 when I was feeling very fatigued. It was the first time I took time out of a working day to do something for my AS. It really helped me that day and I have been attending weekly classes with Yoga for AS since then.
When I was off work I was able to avail of the more gentle classes and online library which really helped during this period of intense flare, and at the risk of sounding dramatic, despair. I generally find Jamie’s Yoga Nidra and Stretch and Relax classes particularly effective during times of flare and intense fatigue and the support in class from other members at this time was overwhelming.
An apprehensive return to work
I felt scared as I prepared to return to work. I am very lucky to work for a large public sector organization which is very focused on its employees’ well being and they were keen to support me remain in full time work. I was so grateful for this but honestly, although I knew what AS was preventing me from doing at work I hadn’t a clue what would make it easier or what to ask for.
Turning to Yoga for AS for Assistance
I turned to Geoff and Jamie at Yoga for AS for help and they each listened to me and came up with stretches which could be done easily and discreetly in an office environment. This was a great start but I knew I needed more than that.
I must confess that Geoff is, for me, the “Grand Master Oogway” of AS. Geoff gave so much of his time and experience in helping me and we worked through a list of possible adjustments together. We contacted NASS who were able to provide a draft letter which really crystallised for me how and why AS was affecting my ability to work and it helped me to articulate this in work.
Customizing Solutions for Unique Needs
A one size fits all “shopping list” of adjustments doesn’t exist for AS sufferers. AS affects everyone differently and every employer is different. What is “reasonable” will depend on the size and nature of the employer and the employee’s role so I really had to dig deep and spend lots of time reflecting on what wasn’t working for me and what might help and then ask for it.
My particular circumstances allowed for a number of adjustments which have really helped and some of these are listed below along with other changes I have introduced myself.
5 Strategies for Managing Work with Ankylosing Spondylitis
1. Flexibility on start and finish times and additional rest times
Starting my working day at 8am is no longer possible for me. I manage morning stiffness by following the NASS video of morning stretches in bed and then Jamie’s 7 minute morning routine both of which are very effective. I also tend to wake with anxiety (especially at very busy times) as to how I will get through the day and the week. I manage this with meditation. This all takes time and there is nothing for it but to give it the time it needs and start work later. I avoid any meetings before 10am and try to avoid having more than 2 meetings per day. I attend meetings online where possible and appropriate. I take a 15 minute rest at 9.30am, 30 minutes or so between 2pm-3pm and I also rest at the end of the day before jumping into family life. Jamie’s Yoga Nidra is a great way to fend off the fatigue and I use it at least once during these rest times.
2. Travel Light, Park close
I now have duplicates of everything I need at home and in the office from large screens and docking stations to lip balm, hairbrush and balsamic vinegar. I have a yoga mat beside each desk ready to roll out for a rest or stretching. A great tip I got from Geoff at Yoga for AS was to invest in a waistbag. I don’t know why but it really makes a load (packed lightly of course) easier to carry. I got mine from "Bagabon". I was also granted a disabled parking space in work outside the office door which makes a huge difference. I no longer waste precious energy walking to and from the office from 15 minutes away lugging a bag which always led to SI Joint pain before I even got to my desk.
3. Sit, Stand,Stretch
I have a sit stand desk at work and home but of course it is only as good as how often I actually stand up. Jamie recommended setting an alarm to remind myself and I now diligently press the button on my sit stand desk and actually stand up at least every 45 minutes - an hour. Yoga for AS can be done anytime, anywhere. I can regularly be seen safely stretching in all areas of the office building - the toilets, the stairway railings, the kitchen and on the office chair. Legs up the wall always draws a raised eyebrow or two!
4. Self-Compassion
For years I believed I am inherently lazy and unable to cope with the demands of the job. I’m not, I just tire easily and need regular breaks. When I get those breaks, I can perform brilliantly with focus and clarity. Less truly can be more. I am learning to work differently and while this is taking time, I realise my true value to the workplace is my skill and experience rather than the hours I spend.
5. Honesty
I am also learning that it is important to be open and honest about my limitations with my work colleagues. The hidden nature of my disability allowed me to “pretend” to be well. I felt useless and unreliable, I didn’t want to bother anyone, and my biggest fear (which I now realise is wholly irrational and unfounded) was that everyone would find out how limited I was and I would lose my job. As I returned to work, I found the courage to be more honest and I was met with respect, kindness and support in the workplace. Turns out that my fears were preventing me from getting the support I need to actually do the job.
Getting to where I am today has not been easy. It has taken time, perseverance, courage, patience and resilience and so much support, patience and kindness from everyone around me. Every day is a challenge and not all days are good but I am hopeful now that I will be working in my job for many years to come.
Community Support
I will always be particularly grateful to the Yoga for AS Community. Yoga for AS is brilliantly effective and fun with an excellent ethos and approach. I had attended excellent yoga classes before but this yoga is different. We acknowledge the awfulness of AS but focus on improving our situations through safe yoga.
Yoga for AS is where I feel accepted and accepting of my condition. It is where I feel safe and empowered.
So, as Geoff would say, “Come on, let’s make a start”. Join Yoga for As. You won’t regret it.
