Plotting course for my dream job


As Youth Editor for this wonderful RARE Youth Revolution, it is wonderful to be able to share my own thoughts and experiences around an issue that is really important to me—RARE employment. Finding my dream job while living with a rare disease hasn't been plain sailing but I hope I can give you confidence to believe that you're dream job really is out there waiting for you!






















Coming straight out of University and not knowing what to do with your life is pretty daunting for most people. All the pressure that has been building up for the previous three years. Expectations of what life will be like post uni can feel quite overwhelming but add a rare disease into the equation and the lack of confidence that just loves to tag along for the ride and it can become a pretty scary time.


I felt lost—like I had been thrown miles out to sea without my uni life jacket, bobbing around on my own trying to navigate these new waters. Everyone I saw that was settling into their new shiny roles at work were like huge fancy yachts passing me by creating roaring waves knocking me under each time. Every time someone asked me what I was ‘doing’ I felt more and more inadequate, as if I was falling deeper behind.


I have always struggled with the whole employment saga. For me, the topic of employment has been one of the most anxiety inducing and nerve-wracking experiences. I believe this has a lot to do with my lack of hearing caused by a rare disease cholesteatoma, combined with the fact that I am dyslexic.


The weeks and days leading up to an interview were terrifying. I would lay awake making up the 101 scenarios that could go wrong in the interview—maybe I wouldn’t hear a question and the awkward silence would be powerful enough to kill everyone in the room.


Get a grip Daisy! It is just an interview and the world will continue to spin if you mishear someone, but still it was a terrifying prospect.

I am writing this to help other young people like me, who may be starting out in the world of work armed with a rare disease/condition/disability who might be in a similar situation and feeling similar angst.


So here are a few things I have learnt about employment with rare disease.


Interviews—honesty is the best policy


Do I tell them I have the hearing of an 80+ year old or do I struggle through this and hope they have a lovely loud voice?

At the start of my journey with rare I did not like to accept the fact that I couldn’t hear and I would try my best to pretend I could, but this usually ended worse than being honest ever would have!


So over time, I have learnt honesty is the best policy. If you have a disability visible or invisible that may impact you in communicating effectively or in the ability to fulfill your role in some way, and you need things to be put in place to overcome this, do not feel scared to ask for help. It will help you considerably in the long run.


I once had a lovely lecturer at university who was the most softly spoken lady I have ever met and I eventually took it upon myself, despite the embarrassment, to ask her to use a microphone in lectures. It turned many of the other students couldn’t hear her either, so they ended up thanking me for standing up and asking and I wished I had done it sooner!


So be brave and be honest. If you need accommodations to help you thrive and be your best in an interview call them up or drop them an email and explain your situation. In my opinion, it is better to be honest from the start, that way your future employer will know exactly what you need and how they can support you.


I know this is easier said than done. I have dealt with the shame that can come with disability. That odd feeling—as if you are causing someone an inconvenience by having a disability when in actual fact you are likely the only one being inconvenienced.


If you are worried what people might think, remember, if they think anything less of you, or don't want to make the experience the best possible accessible experience for you then you really don’t want to work for them anyway!

You might be surprised


You might feel as if you are the only one on the planet that is having such a difficult time due to your rare disease and you might feel like you are the walking embodiment of a flake, feeling like everyone else has but you has their sh*t together. But the reality is, most people understand life is complicated and if you have to prioritise your health for a couple of days a month whether that’s due to appointments or you are struggling to manage with pain, sickness, or mental health issues most will understand.


Show preparedness where you can. With preplanned appointments let your workplace know in advance to help them plan around it. If it is something more last minute that you can’t avoid, keep channels of communication open with someone you feel comfortable talking to at work so they can manage the workload in your absence.

It is easy to make assumptions that everyone is thinking the worst because you had to take one day off after 1,000s of brilliant and effective hours. Don’t fall into this trap. The truth is, no one is thinking that, they are most likely thinking about how their partner doesn’t flush the toilet and it is becoming a problem or what they are having for dinner or what episode of selling sunsets they are going to watch after work.


You might be surprised that most people are really supportive and accommodating if you maintain effective and honest communication around your needs. So keep talking.



You are the expert—trust your body and find support in the voice of others


You know your body better than anyone else. If something doesn’t feel right and needs your attention listen to body and let your employer know how they can help.


You may also find it helpful to reach out to a rare support group for your condition so you can ask others for their advice—how did they handle this situation? Do they have advice for managing issues at work? Gain strength from others who have tread the path before you.

Even if you think you know it all you could be surprised, the rare community can be an amazing font of knowledge!


Be brave, be bold


Remember, you have just as much right as anyone else on this planet to get that job.

I know it isn’t as easy as it sounds but please try and believe in yourself. It is easy to feel like we are not good enough especially when our body doesn’t work how you would like it too! We can start to feel really down, out and isolated.


Make sure you keep talking to your work mates about how you are feeling so they know when you are struggling, and please do not be so hard on yourself.


If you are doing your best that is all you can do and your best is enough for the right employer.


You are you and you are great


You are you and you might as well take advantage of that!


Use your knowledge and experience of having grown up or lived with a rare condition to showcase all that comes with it, for example, the character building that accompanies a rare disease/condition/disability is incredible. There is no doubt that you have experienced some unbelievably emotional and difficult moments throughout your life more so than many your age.


The strength of dealing with rare disease is something which cannot be taught nor brought. You are resilient and I don’t know about you, but personally, having rare has given me a very unique empathetic perspective of the world and we know better than anyone that there is more to people than what meets the eye. So, use your unique experiences which have shaped you into the brilliant young adult you are today to help you get that job. Show your employer you are empathetic, intelligent, sensitive, resilient and able to cope with everything life has thrown at you so far! This may well be your employment super-power!


I sailed the storm and a few months and a lot of dud applications, CV edits and interviews later I am finally doing something I love and I can hold my own with my peers in their fancy career yachts!


So do not despair if you are a 20-something year old with rare disease feeling down and out and bobbing about out at sea without a clear course laid out in front of you take comfort in the fact that things change. With patience and determination the opportunities are there to be found and you are more than capable of achieving your dreams! With the right employer who sees your talent and can give you the work culture and tools to tap into this you can truly shine!😊


Written by Daisy Marriott


Communications Assistant, RARE Revolution Magazine and Youth Editor, RARE Youth Revolution!








Watch this space for exciting breaking news coming soon regarding future opportunities within RARE Youth Revolution...


To share your story with the #RAREYouthRevolution please email Daisy Marriott

dmarriott@rarecommunication.com

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