A Guide to Writing Your Own HS Story

hidradenitis suppurativa stories and experiences

Many people share their stories to educate and inspire. As well as for catharsis. For me, it was all those things, but I also wanted to create a record of my experiences.

Telling your story is difficult. It can bring up a lot of feelings. Not all of them good. From personal experience, writing about my condition has been freeing. So, not telling your story can be difficult too. Maya Angelou said,

“There is no greater agony than bearing an untold story inside you.”

It is a big decision. And one you should consider carefully especially if you decide to publish it. If you decide to take the leap, I have compiled some tips and thoughts on how to go about it. This is your guide to writing your own story.

Boundaries

Writing your story is an emotional process. But it can also be incredibly liberating. For it to be a positive experience, you must decide what shape it will take. Decide why you are telling the story, don’t let the story tell you. Do you want to educate or raise awareness? Or do you just want to tell your story? Either is fine.

Lots of people worry about over-sharing. In this case, I would be more concerned about sharing more than you are comfortable with. You don’t owe anyone your story; it is yours to tell as you will. Leaving some things out is not dishonest, it’s self-care.

Once you have written your story, you should decide if you want to publish it. People who write to raise awareness always intend to publish. But for many people it’s for themselves only.

If awareness is your motivation, think carefully. Once you put it out there, it is hard to control. Make sure that you are ready to put your story out there. Shelve it for a bit if you need to and take your time writing. You could show it to a friend first to test the water. Set your boundaries from the beginning and revisit them when you need to. And remember your wellbeing is the most important thing.

Writing

A man writing his hs story on a notebook

The first thing you need to do is jot down some bullet points. Write down when your symptoms started, how you felt and seeking help. A timeline of events might also be helpful. The first step is just for you, nobody else needs to see it. It is merely a picture of what you want to say for you to work with.

The next step is deciding what style you want to use. Most people tell their story in a narrative, starting at the beginning and ending with where they are now. But you may want to write a letter or a fictional piece. How you tell your story is up to you and there is no right or wrong way to do it.

Now you are ready to write. The best writing advice I have ever received is to write the first 100 words. It doesn’t have to be right; you may rewrite it later. And you don’t need to write from the start. The hardest part of writing anything is always the blank page. You know what you want to say, but it won’t come out. So, write anything. You will be surprised at how easy it is after that.

Reflection

Woman reflecting on her hs story

So, you have written your piece. In the beginning, we talked about reflection. But reflection is not really a step. Rather a constant rhythm throughout the writing process. You should be doing this all the way through. It will help you make decisions and get over stumbling blocks. As well as that, reflection will make your writing better. So, take your time.

That being said, you may have many more emotions once you have finished. Writing your story is a very personal thing and can open old wounds. Consider the following:

  • How do you feel?
  • Have you accomplished what you intended?
  • Would you be okay with other people reading it?
  • Would you change anything you have written?

Check-in with yourself frequently. Don’t let anything be published, you don’t want out there. And seek support if you need it.

Publishing

Publishing hidradenitis suppurativa stories

If you decide to publish, your final step is finding the right forum. You can always blog. Blogs are easy to set up and manage. But it takes time to build a following. This brings us back to our purpose. If you mean to educate, inspire or raise awareness long-term, you might consider setting up a blog. If you would like to share a once-off piece with a ready-made audience, contributing to a site is for you.

If you choose to contribute to a site, make sure that the publication holds the same goals and values as you. Inclusiveness, social change and body positivity are good places to start. Chances are if you are doing this you have read a lot of personal stories. Check if your favourite sites are accepting submissions.

If your story is published, congratulations! But if not, don’t despair. Lots of online publications are busy. And the fact that they didn’t choose your piece this time is not a reflection on you. Keep trying, you will get there.

Summary

Getting a diagnosis of hidradenitis suppurativa is a long winding journey. If you are like me and I imagine you are, you have told your story to yourself many times over. You have a lot to offer with your story. And you are inspirational. You have overcome so much because HS is a formidable villain. Your story is so valuable and according to Neil Gaiman,

“Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten.”

Remember when writing a personal piece:

  • Know why you want to tell your story.
  • Only share what you are comfortable with.
  • Create a shape first. Figure out what you will write and how.
  • Reflect throughout your process.
  • Find a publication that matches your goals and values.
  • And above all else, look after yourself.

I wish you the best of luck in your writing journey.

About the Author

Shannon hidradenitis suppurativa patient

Shannon Sweeney is MA student in Community Research & Journalism from Ireland. She is also living with HS and has a keen interest in lifestyle, wellbeing and hidradenitis suppurativa.

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