Allied Health Providers Articles

Article submitted 12/04/2025 by Sienna James, Speech Pathologist and GBS Warrior - GBS Change of Perspective

“Life’s challenges are not supposed to paralyse you; they’re supposed to help you discover who you are.”

Bernice Johnson Reagon

This quote might seem like an odd choice for a person with Guillain Barre Syndrome (GBS), because my greatest challenge in life, did in fact paralyse me physically for a time, but it did not paralyse my spirit or determination, and I have learnt a few things along the way.

Prior to my GBS diagnosis, I was working in a hospital as a Speech Pathologist. My role meant I worked with people, ironically including those with GBS, who had lost or developed difficulties in the areas of communication and swallowing. I loved working in the hospital environment, I felt comfortable in that environment and I had a lot of knowledge about illnesses, but nothing prepares you for actually having a diagnosis such as GBS.

I knew academically and from professional experience, what GBS is, how it impacts the body and that it takes a long time and a lot of hard work to recover from, but treating it and living it are two very different things.

My life changed overnight. It’s scary, challenging and there is grief associated with the life that now seems lost and the fear of not getting it back. Being a patient in the bed, you lose all sense of control over your situation. As my condition worsened, not only was I totally dependent physically on the people around me, but you are completely dependent on others to get information about what is going on. The number of times that I was confused about what was going on, wanting to know more, not knowing what to do or what was going to happen to me was often the hardest thing. There have also been super frustrating moments where people attempt to give well-meaning words of encouragement that often came across as condescending or wholly inadequate for the issues I was facing. This is something I still face as even after 6 months, I still can’t walk properly or do many simple things that I would normally take for granted. People tell me, I’m progressing well and that I need to accept that recovery is slow, but knowing recovery is slow and living that painfully slow recovery every day is very different.

As a health professional going forward, it has really made me stop and think about the importance of empowering my patients with knowledge, so they are not left feeling confused. It has also hammered home the importance of empathy. I always prided myself on being an empathetic and person-centred clinician, but improvements can always be made. I know from experience that being in hospital is awful, having to fight every day just to do simple things is exhausting and frustrating, and trying to get my life back sometimes feels like an impossible challenge. Health professionals need to recognise that these situations need so much empathy, not a quick cliched word of encouragement or rattling off of a study, but rather the health professional needs to listen to their patient, hear their story, empathise with what they are going through and be supportive. It has also made me think about the words I use with patients. Words are powerful, they can leave you feeling encouraged or absolutely crushed and so what we say to patients is crucial in supporting them through their challenging time.

On a personal note, this experience has taught me that I am far more resilient and determined than I realised. Even though I get annoyed at my body for not being able to do things it once could, I have learnt that my body is strong and can overcome challenges. It has reinforced the need for community and support. I am lucky to have amazing family and friends in my corner, but community and support can come from all different places, so it is important to share your story, particularly with people going through the same thing, so GBS support groups and charities are absolutely amazing for this. Never underestimate what sharing your story can do!