Achievements and challenges I’ve faced as a disabled person

We hear from Stephanie Rolf about her experiences living with a disability and why she is a proud advocate for Ehlers Danlos Syndrome (EDS).

There are always going to be challenges being a disabled person however, those achievements everyone else brushes off, for me, are huge.

I was diagnosed with Ehlers Danlos Syndrome (EDS) and PoTS (postural orthostatic tachycardia syndrome) symptoms at 26-years-old after 13 years of investigation. My biggest achievement since my diagnosis is that a doctor said I would be a full-time wheelchair user within five to seven years of my diagnosis, yet nearly 12 years later, I am still out of the chair the majority of the time. There are days, or weeks where I have to use it, but as long as I can make the most of the good days, I will take it as a win.

I’m a very proud advocate for EDS and I will do as much as I can to raise awareness. I still meet doctors today that don’t know what it is so the more people that know, the better. I’m proud to be part of the EDS community, where we support each other through the ups and downs and very strange symptoms that others believe are all unrelated. I strongly believe that being a disabled person myself has supported me in my job. I work for a disabled person’s charity and having lived experience really helps me empathise with the people I support.

My biggest challenge being a disabled person is accessibility. Going places that say they are accessible and then getting there and not being able to participate because there are too many stairs or the accessible toilet is always either disgusting or used as a storage space. It’s disheartening that places don’t take pride in their facilities for disabled people. The amount of planning we have to do as a family before going somewhere is ridiculous. I would love it to be as simple as getting up one day, saying ‘we should go somewhere today’ and actually being able to do that.

The other challenge unfortunately is other people. I have good(ish) days and I have incredibly bad days but I don’t want to be turned away from using an accessible toilet because ‘I don’t look disabled’ on those good days. It really frustrates me that people still believe that a disabled person should ‘look’ a certain way - but they don’t see that my heart rate creeps up and my blood pressure plummets just from standing up and I need access to the emergency cord if I’m about to pass out.

Having support around me means that, even on my bad days, I can still get out of the house. I can still enjoy my life because I have the reassurance that someone is there to help. I can go anywhere knowing that if brain fog kicks in and I can’t communicate properly that the people with me know me well enough to answer how I would answer. I can work every day and know that I can get there and get back safely which gives me a great deal of purpose. Yes EDS can be rubbish, I am in pain and my body is extremely unpredictable but it has also made me the person I am today; resilient, empathetic and incredibly passionate about disability rights.

Find out more about Disability Pride Month.

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