Are you interested in writing a blog about your experience of rare disease?

Whether you live with a condition yourself, or are a family member or carer for someone who does, we want to hear from you! We believe that sharing real life experiences of rare disease is essential to raising awareness about the issues facing those who live with them. Blogs can help bring patients with similar conditions or symptoms together, and help people affected by rare diseases to feel less alone.

The guidelines below should give you an idea of what to write about in your Patient Experiences blog. Once you have written the piece, you can submit your blog to us by e-mailing [email protected]. If you are not sure whether your blog idea is appropriate, please e-mail us first to describe your idea (in no more than 100-150 words).

The basics:

Planning your piece:

  1. Decide what to write about. You won’t be able to cover everything in one blog piece, so choose a period of your life, or a particular issue that you face, that you would like to write about. Here are a few suggestions:
    – Before I received a diagnosis.
    –  Managing my rare condition when there isn’t a treatment available.
    –  When my child first developed symptoms.
    –  Setting up/volunteering with a support group or patient organisation.
    –  Being involved in research.
    –  The difficulties of explaining my condition to friends.
  2. What impact has this issue or difficult period had in your life? Why is your story important? This is what you should try to get across throughout your blog.
  3. Do you have any tips or advice you’d like to share? What would you say to someone going through a similar experience? Other patients could learn coping mechanisms from your blog, please do not attempt to provide medical advice! (If someone needs medical help, their doctor should always be the first point of call).

 5 tips for blogging about your rare disease:

  1. Write as if you are talking – blogs work best when they are conversational. Use words you would usually use – avoid looking at the thesaurus if you can!
  2. Don’t be afraid to share the difficult bits. It can be daunting to share experiences that have been challenging, but describing them could help others going through similar things. You might be able to help others by sharing how you coped with your experiences, and what support helped you (whether from friends, family, a patient organisation or support group).
  3. Stick to specific events, such as the time just before diagnosis, or a particular obstacle you have faced, such as learning to live with pain. When you have lived with a rare disease for a long time it can be tempting to try and write about everything you have been through. It is generally more impactful to focus on a significant period of your life.
  4. Describe how the events or obstacles have made you feel. It is easier for readers to relate to feelings than objective descriptions of events. For example, instead of:

    “I was admitted to hospital for some tests so they could work out what was wrong. The next day, the doctor gave me the name of the condition and the name of a patient organisation in my area.”

    Why not write:

    “I was terrified when my GP said I needed to go to hospital for the tests – I could barely sleep the night I was there. It is hard to put into words what I felt when the doctor gave me the name of the condition. I’d never heard of it before, and I was confused. It was a relief when he handed me a leaflet for a patient organisation in my area. Their support has been invaluable.”

  5. Don’t put pressure on yourself to write about something you aren’t comfortable sharing. It can be hard to write about living with a rare disease, and if you’re not sure you feel up to it yet, that’s okay. We don’t give deadlines to people who want to write a blog, and you can take as long as you need to finish it. If you want to write about something you wouldn’t usually talk about, you can publish the post anonymously or with just your first name. Please tell us beforehand if you would like to do this.

What we can’t publish:

Other information:

Rare Disease UK would like to acknowledge that this document draws on the guidelines written by Mind.