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Rare Disease Day: Working with a Rare Condition

  February 29, 2016   

Today marks the 9th annual Rare Disease Day which aims to raise awareness of the impact of living with a rare disease. A rare disease is classed as any disease which affects a small percentage of the population; in Europe this is considered to be less than 1 in 2,000 citizens. With nearly 7,000 rare diseases identified to date, there is a broad diversity of conditions affecting people.

Rare diseases are characteristically hard to diagnose which can be due to a number of factors including a lack of quality information available or common symptoms masking an underlying condition, leading to an incorrect diagnosis or a delay in diagnosis. Moreover, living with a rare disease can be isolating; it is common for an individual with a rare condition to have never met someone else with the exact same condition

The theme of this year’s Rare Disease Day is patient voice; highlighting the crucial role individuals who have a rare disease play in voicing their needs. If you have a rare condition, the ability to communicate your needs is particularly important when it comes to the world of work, both during the recruitment process and in the workplace. Yet, how on earth do you go about this when few people will have even heard of your condition, let alone have an understanding of how it may affect you?

As someone living with a rare disease, I’d like to share some of my experiences and top tips for working with a rare condition.

Putting together the puzzle pieces

I have a particularly rare form of Muscular Dystrophy known as ‘SEPN1 Rigid Spine Syndrome’. There are actually around 60 different types of muscle-wasting conditions which affect individuals in a wide range of different ways which may or may not be visible.

My experience of living with a rare disease has felt like gradually putting together the pieces of a puzzle. When I finally received a correct diagnosis at the age of 22, I gained a great deal of information and support from Muscular Dystrophy UK and later joined Trailblazers - their network of young disabled campaigners.

The reality of living with a rare disease is that even now at 27 I am still discovering new ways in which my condition manifests itself and pursuing my career goals has presented new challenges.

When I began my teacher training I was aware that I had a reduced lung capacity which affected my ability to project my voice. However, it was only when I was in the classroom that I experienced the complete exhaustion which resulted from me constantly using and attempting to project my voice.

I’m proud to say that I completed the notoriously gruelling PGCE and qualified as a teacher. I believe that the resilience and determination I demonstrated to achieve this are qualities I have developed as a result of having a disability. Whilst teaching wasn’t a sustainable career for me, it enabled me to develop many transferable skills.

The benefits to being open

When I applied for my current role at Great with Disability I shared relevant information about my condition during the application process, although I didn’t require any adjustments at this stage, I found that this made me feel more comfortable discussing the support and adjustments I would require in the workplace once I was offered the job.

My condition is complicated, invisible and affects me in a variety of ways, so I decided to create a statement to give to my employer outlining how my condition affects me and what impact this might have in the workplace. Communicating this information was a weight off my mind. I didn’t want to have to inform my employer about each individual effect of my condition when it had an impact at work.

Having a rare condition can make it difficult to identify the support and adjustments you are likely to require, especially when you don’t know of others with the same condition.

However, the open dialogue I established with my employer has enabled me access support and adjustments as and when required.

A key thing I have discovered is that you can learn a lot from other disabled individuals irrespective of whether you share the same condition. Hearing how others manage their condition at work has empowered me to be more proactive in accessing support to enable me to perform to the best of my ability.

Top tips

  • Trust that you know your own body best and avoid comparing yourself to others. Remember even if you do know of someone with the same condition as yourself, it is common for individuals to be affected differently and for symptoms to vary.
  • You are the expert in your condition. Enable your employer to support you by clearly communicating information about how it affects you.
  • Use your unique perspective as an asset. In a highly competitive graduate job market everyone wants to stand out to employers; having a rare condition gives you a unique perspective of the world.

By Hannah Birkett
Marketing Assistant
Great with Disability