Our thoughts, this November, turn towards patient – provider relationships. It can be difficult to keep perspective of the other side, from either end of the relationship. But it is so important to remember the human side of both experiences.
Mighty Well Ambassador, Ziyad, experiences both sides every day. Check out our interview with him abou his experience as both a provider and invisible chronic illness patient below!
Can you tell us about yourself?
My name is Ziyad (@thegrumblinggut) and I was diagnosed with Crohn’s Disease in 2007. “You don’t look sick to me” and “you look fine to me” are the most common phrases I hear when I tell people that I have Crohn’s Disease, one of the two main forms of inflammatory bowel disease (IBD). In fact, I haven’t been fine since 2006. Am I able to hide my illness well? Yes. Only because any visible sign of the disease is internal, hence why IBD is known as an invisible illness. Has it impacted every single aspect of life? Yes. But anyone that has been diagnosed with IBD or any other chronic illness will tell you that despite the tough times, you just “get on with it”.
How did you first get involved in the Mighty Well patient community?
I was approached by Might Well over on Instagram after sharing one of my posts. After having a conversation and seeing that our pages are similar in terms of raising awareness of chronic illnesses and providing support to those who suffer with them, I was so happy to be asked to collaborate.
As a radiographer, you are working with fellow patients on a day to day basis. As a patient yourself, what do you bring to this role that others do not?
Even though as diagnostic radiographers we don’t provide treatment per se, we still carry out the imaging that is needed for them to receive a diagnosis which will then determine what treatment a patient will have. My patient experience of having such a great IBD specialist showed me the value of treating each patient as an individual and involving them in decisions that are made about their treatment. I always try and give my patients an opportunity to express themselves and have their voices heard, even if it’s just to have a chat about what is bothering them. This can help them feel like they can get back some control over their disease.
Do you have any advice for other providers about how they can better connect with / serve their patients?
We all know that it can get really busy in hospitals and as healthcare workers we do feel pressured to try and manage waiting times especially when the waiting room fills up. It is so easily done to fall into what I call the ‘conveyor belt’ motion of person in, another out, keeping your head down to get through the patient list. But it is in these moments where we can miss someone that may look apprehensive or scared, and by simply taking the time out to ask the question of “are you Ok” can make such a difference to someone. It can help provide them with a better hospital experience and improve the perception of care they are receiving especially as you are showing them that, despite how busy you are, you’re valuing them and giving what little time you have to them. This can help encourage them to find their voice and give them the opportunity to be heard and express themselves making them feel humanized and not just like a number or an examination to be scrubbed off the day list.
Could you share a few words of support for patients in the Mighty Well community?
No two stories are the same and so don’t compare yourself to others and never put yourself down because you can’t do things someone else can. Be comfortable and proud of what you have accomplished while living with your chronic illness; this isn’t a race or a competition and there are no winners or losers. Just be you and realize that is your strength.
