My life with Albinism, sight impairment, and Colitis

I am registered severely sight impaired (blind) and use adaptations in my day to day life like magnification software on my computer, a long cane and a monocular for reading signs that are far away. My phone has also made a massive difference to my life by allowing me to zoom in to take photos of menus in cafes so I can look at them up close, for example.

Growing up with a vision impairment is challenging and I have faced some barriers to participation in everyday life. However, I’ve also had excellent support and advice through education into employment and I now work for a sight loss charity.

I had been unwell for about three months before my diagnosis and had been diagnosed with anaemia. By the time I got into hospital I had lost a lot of blood and needed a transfusion. Because of my vision impairment I didn’t realise I was passing blood until close to the time of my diagnosis when it became very obvious. Prior to this I had never spent any time in hospital and I did find it all quite daunting, mainly due to my vision impairment.

I think the most difficult thing for me was the lack of information I was given, which made me feel like I had very little control over what was happening to me. I really would have appreciated someone explaining the tests they were going to do, for example. 

The second time I went into hospital things were a little better. One of the nurses went through an admission form with me and asked if there was anything I needed to make my stay as comfortable as possible. I explained my vision impairment and that it would help if people told me who they were when they came in and explained what they were doing. For the most part, this did happen. 

Although I was shocked at the diagnosis, I was also glad to have a name for the condition and a treatment plan. I also discovered that there are many more people who have Crohn’s or Colitis than people who have Albinism, which is a rare condition. This meant I got a lot of empathy and advice at the start, because people were more familiar with it. 

I also had an incident where I didn’t see that I had only taken six of the seven steroids I was meant to take during my first flare. I was very unwell that day and glad to discover the reason! I think I now rely more on remembering how a flare up feels in comparison to normal times.

Fatigue is the symptom I find the most difficult to manage. Fortunately, I have a flexible working pattern for when this happens, and my employer is very supportive. If I am unsure about a flare, I speak to the IBD specialist nurses who are fantastic.

My vision impairment is a bit of both, visible and invisible. It’s not always recognised as a disability because there is a lack of awareness that sight loss is a spectrum. A lot of people think that there is only blindness or full sight and nothing in between.  This means it is important to be able to explain yourself clearly. When I was younger, I found this very difficult because I preferred not to draw attention to myself. However, over the years I have gained confidence in doing this.

I think living with a disability has caused me to be more creative and adapt to changes in a more positive or constructive way. I am used to having to work harder than others may have to achieve what I want to achieve.

Disability communities are a great place to share experiences and get advice and support. For the public, I wish people know that both of my conditions can change from time to time. My vision can be worse if i am tired or stressed and my Ulcerative Colitis can flare up sometimes.

It would be really good if people could ask more questions about how someone with a disability does things, rather than making assumptions about what we can and can’t do based on their (often incorrect) perceptions. Unfortunately, there are still a lot of ignorance around disability, and I think this will only change when we become more visible in all areas of society.