It can take years to receive a diagnosis of Hidradenitis Suppurativa (HS). One reason for this is that it’s not a well- known disease. It is a secret a lot of people keep, and even medical professionals misunderstand it. HS awareness and understanding its impact is essential. But often people with HS feel embarrassed to talk about it.
Embarrassment is caused by perceived stigma, that is stigma associated with what you believe others think of you. Enacted stigma is when you have been discriminated against or treated badly because of your symptoms. Awareness is the best way to reduce stigma and therefore embarrassment. The best part is, anyone can do it. Sadly, embarrassment and stigma make it hard to raise awareness. But talking about your condition from a personal point of view is not the only way.
Whether you can talk about it or not, there are things you can do. Here are 5 ways you can raise awareness about HS.
Share information on social media
This one is so simple. We spend an average of 3 hours a day on social media. The reality is that search engines are our first port of call when it comes to almost everything. So, making sure that there is reliable information available is essential. If you come across a post about HS and you find it useful, pass it on. Like, share, retweet, because I promise it makes a difference. Also, if you like the content creator, follow them. It’s an easy, free way to support educational content and you don’t know who it might help..
Make sure your doctor surgery has leaflets
Next time you visit your doctor surgery or clinic, check the information stand. Do they have information on HS? My local doctor surgery does and that’s how I was diagnosed. Patients can spend a long time in the waiting room, and they do read the information leaflets. If the surgery or clinic do not have booklets, ask if you can provide some. When you do, highlight it with the doctor you see as they may not be familiar with the disease. Helping them to understand helps you too.
This goes for medical professionals as well. You are your patients best medical advocate. So, make sure they have access to good information. This will help you because your patients will be better able to inform you about their symptoms.
If you are in Ireland, The Irish Skin Foundation is the national organisation for skin conditions. They can send you or your surgery booklets. In some cases, you may need to make a small donation to cover postage and packaging.
Fundraising
Perhaps you don’t want to talk about it at all and you would rather nobody know you have HS. But you do want to help. That is fine and absolutely your right. An option for you might be fundraising.
Organisations for skin conditions raise awareness for HS as well as eczema and psoriasis. They are good at what they do, but they can’t do it without donations. If you are uncomfortable raising awareness, why not help those who are already out there. You would be doing vital work and helping others to continue theirs. Here’re some ideas to get you started, but don’t forget to check in with your chosen organisation first.
- Ask a local business if you can give them a donation box.
- Get involved in flag days.
- Organise an event, like a table quiz.
- Bake sales do well if you are a student on campus.
Blog
People all over the world are writing about their health conditions and disabilities. They raise awareness for aspects of their conditions that people don’t know about. Topics include coping strategies, discrimination, how-to, body-acceptance & positivity and lots more.
Setting up a blog is easy, and it allows you to tell your story if you want to. As well as that, you never know who it will help.
You don’t have to be write either. Art, photography and poetry are all great forms of activism. In fact, your imagination is the limit. Gone are the days when you need to impress a publisher. All you need to do is choose a platform, sign up and get creative. Give it a go because it’s a great way to help and it is lots of fun.
Answer questions
For those of you who are comfortable talking about HS, a simple way to raise awareness is to answer questions. HS is not a well- known condition, so most people don’t know what it is. It is natural for anyone hearing about it for the first time to be curious. Showing that you are willing to talk about it, encourages others to learn rather than make assumptions.
However, you are never obligated to explain your health to anyone. Boundaries are so important, and you get to decide what boundaries you set. Here are some I stick to,
- I only answer questions that are asked with aim of learning rather than to pry.
- If I am uncomfortable, I say so.
- I know that I am not the only person working on this and if I need to step back I can.
Contact your local paper or radio station
Local papers and radio stations are always looking for interesting stories to share. It doesn’t have to be your HS story if you’re not comfortable, but you could notify them and lwet them know about HS and how you are trying to raise awareness.
Raising awareness can be a really fulfilling thing to do with benefits for you and others. But the most important thing is to take care of yourself. Self-care in activism and volunteering is essential because burnout is so common. Burnout is when you feel exhausted from the work you do to the point where it affects your mental health.
Remember to take breaks when you need to especially on the internet. Only talk about what you are comfortable with and pull in people to help if you need to.
The last thing I’d like you to take from this article is that you are never too small to make a difference. If you help one person understand what’s happening to their body, you have made a world of difference. If the information you sponsored, provided or shared, helps one person, it’s worth it.
About the Author
Shannon Sweeney is a psychology and sociology student from Ireland. She is also living with HS and has a keen interest in lifestyle, wellbeing, and Hidradenitis Suppurativa.
