Our colleagues at Vocal have collaborated with people living with a musculoskeletal (MSK) condition and MSK researchers from the NIHR Manchester Biomedical Research Centre to share stories about physical movement, self-management, and research. Search #MyMSKStory on Facebook and Twitter or follow @letsgetvocal to find out more. 

Here’s Shanali’s story: 

The start of my illness was in 2009 during my specialist training in Rheumatology. I started to notice changes in my feet, my legs and my hands in particular; they seemed to be bruised, they tired easily, and I couldn’t feel the tips of my fingers.

What had happened to the usual ‘movement and flow’? What took over?’ I was sub-specializing in vasculitis at the time; one moment, I was seeing the everyday struggles patients go through and the next, I was living it. The shift of perspective from being a clinician to a person with unexplained symptoms and then to a vasculitis patient was a challenging transition. It was a very humbling experience to end up as a patient in my own specialty of training.

I was faced with a huge shift in dynamics; I suddenly felt ‘wow, I don’t feel like Shanali anymore. I’m a patient’. Not only that but as my condition worsened, my body confidence and sense of identity had become warped. I gained weight, I was hunched over, I couldn’t walk more than 200 yards without becoming exhausted, often needing wheelchair assistance. I didn’t believe I would ever get my physical life back. I was afraid of becoming trapped in my body as well as confined to my home. Because it took so long to get my diagnosis and the correct management plan (7years) I began to fear that this would be my life forever. My image of myself and my life had spiraled into distortion and that’s when I reached out to Vasculitis UK. It was through them that I realized that I wasn’t the only person going through this condition nor experiencing the side effects of the various medications I was being treated with.

Being in lockdown and shielding for months, I had nowhere to go but inwards. I knew I wanted to reclaim my freedom and take back my life; back from the clutches of my illness, but I had become governed by self-doubt and fear. Even though things were becoming more and more stable with transformative new treatments and coping strategies, I was still struggling with movement. I realized that I was still hiding, hiding behind the illness, which had now become my new comfort zone. I was sabotaging myself from fully moving forward.

One day, while I was strolling around the neighbourhood, I was contemplating my condition, my heavy legs, the numbness, my loss of rhythm, freedom of movement. Then I had a light bulb moment – I was suddenly visualizing the scene from the film Avatar (2009) when the character Jake Sully, a paralyzed former Marine, starts to walk again. It felt almost like the fog cleared, clarity took over. I wanted to feel my legs again. I wanted to experience the same feeling as Jake Sully, the feeling of “being free”. 

I began to speak to myself quite emphatically “Shanali, you are not the illness you are a person first. Vasculitis is only one part of you, an aspect that will always be with you, but does not define you.  As I walked, the following words kept going around and around my head.

“Shanali, you will dance again, you will find your rhythm again, you will find your swing.” Over the next 8 months, using an app on my phone to monitor the distances, I started to lengthen the distance that I walked, eventually increasing it from 200 yards to 5 kilometers.

I challenged myself to stand up straight while I walked. I went from a stooping shuffling woman with movement issues to a woman who walked erect, with rhythm, swing and a spring in her step.

Breaking free from the illness that trapped me for so long was incredibly liberating!  I began to understand that movement isn’t just a physical thing, rather, movement is physical, emotional & spiritual. Movement is about being robust, about being willing to discover the truest version of myself. So, despite my many physical challenges, I decided to go from dealing with movement issues to moving with purpose.

Finding purpose along with the ability to move again, was me reaching a milestone in my forward journey with Vasculitis, living my life to its full potential. Being able to give back to the Vasculitis community that played a key role in supporting me was certainly empowering. To that end, I took part in a sponsored 5 kilometers walking challenge on World Vasculitis Day (15th May 2021) to raise awareness and support Vasculitis UK. This was the start of my moving forward initiative ‘Moving forward with Vasculitis – Are you with me?’. Supported by my friends and family globally, I completed my 1st walking challenge this year, raising just over £3,000 for the charity, as well as raising awareness of this rare musculoskeletal condition. As for dancing? I’ve already started belly dancing classes. Watch this space.

Interested in shaping research? Join Vocal’s friendly Musculoskeletal Research User Network and #GetVocal 

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