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10 Top Tips for ​RARE Employees

Top Tips from Employee’s

  1. Be honest 

Opening up to anyone about our limitations is scary and asking for what we need can be difficult but honesty really is the best policy when it comes to communicating with our employers. Establishing a clear communication channel is important in setting a president and it is better to be honest from the start, that way your future employer will know exactly what you need and how they can best support you.

  1. Be flexible 

Be flexible with yourself if you can’t manage going into the office one day then explain to your employers that you will be more productive if you are able to work from home, whether that is on a permanent basis or just for a few days a week. Sure, employers have to be flexible but you do to with your expectations of yourself.

  1. Be Prepared

If you have a preplanned appointment coming up start to factor this in with your deadlines and meetings, make it work for you if you know you might need a few calm days after said appointment get the difficult tasks out of the way before. Try to let your employer know as soon as you can and if something unexpected comes up communicate clearly with someone you can trust. 

  1. Be kind to yourself 

Living with a rare disease, condition or disability is a job in itself. Please don’t be so hard on yourself. Sadly, there is no instruction manual for life with RARE and sometimes we can be thrown a curve ball so if today is not your day try and accept that you are doing your best and that is all you can do the right employer will understand. 

  1. Take a break 

It doesn’t have to be all or nothing. Sometimes just taking a few minutes out can leave you feeling refreshed. If you have a phone call scheduled go for a walk or take it in another room. Changing it up really helps with bringing back your focus and giving your mind a little rest is important. 

  1. Don’t take it home

If you are working away from home try and get into a good routine of leaving the office when your hours are finished, it is all to easy to tell yourself you will just finish this one task and then 2 hours have gone by. If you are working at home make sure you stick to the same rule, it is even easier to carry on replying to emails whilst you are cooking the dinner but you need some you time and if you are struggling with your work load talk to your employer so a solution can be found. 

  1. Look after yourself 

 Prioritising your health is important and try not to feel guilty about this. If you are needing time off after giving 110% every other day accept this and let yourself have it. You know your body and if you ignore its warning signs this could leave you out of action for a longer period of time and is counterproductive in the long run. So, let your employer know there could be a rocky path ahead and that you will need support. 

  1. Make connections 

Talk to your work friends if you feel comfortable in doing so and let them know your situation and how you are managing at the moment. If you need a hand with a task just ask the worst thing they can say is no and in that case talk to someone else! Reach out to other people in the community you might find they are in a similar situation and have some really insightful advice for how they are managing working life. 

  1. Know your rights? 
  2. Find your passion? 

Mixture of my own thoughts (RYR article, Davids blog and some ideas from David singleton interview) 

Rare Revolution (

Rare Revolution (

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