My Thoughts on Sharing Your Illness with Others


Alanna Wong

Everyone has a story to share – this is what connects us to one another, no matter our family background or where we come from. No matter what you’ve been through in your life, telling your story is the first step to creating meaningful relationships and building a strong support system.

People with invisible illnesses are often misunderstood, blamed, mistreated and judged. When we don’t acknowledge the truth of such illnesses, we are telling these people that they don’t matter or that they have no value. How will people heal if others don’t want to acknowledge that they have an illness in the first place? Society needs to understand invisible illnesses (many of which are neurological-affecting the brain and nervous system) are like any other condition that affects a different part of the body. Until this happens, people with invisible illness will continue to be stigmatized.

By sharing our personal experience with illness, we hope to build bridges with others around us, so that they will know and understand us better. Hiding our illness can cause embarrassment and leave us feeling ashamed about it. There is no fault in being faced with an illness. It is our truth; and how can we form real relationships with others if they don’t know what we go through?

I also believe that talking about your illness can help with the healing process. There is so much freedom in telling the truth. You no longer have to hide or pretend. And by opening up, you also reach out to others who may be going through a similar experience, and that helps you realize that you’re not alone. The more you share, the more you inspire others to do the same. And when you heal together, you heal faster. Chronic illness can make a sufferer feel alienated, but when we share our experiences with the illness, we open up new connections with others just like ourselves, and we don’t feel so alone anymore. Knowing that we are not alone is such a comforting feeling and it can definitely help the one struggling get through a difficult period. When you share, you are also helping yourself release bottled-up emotions like anger, frustration and fear. I’ve personally found that, the more I share and talk about my condition, the less of an effect it has on me.

Sharing your story is also a great way to spread awareness. Awareness, I believe, is what leads to acceptance. When there is no acceptance, there is very little support and people tend to get left behind. Opening up about your illness can help change this. The more awareness about your condition, the less isolated you will feel. And who knows, you might even inspire others to get the help they need. With acknowledgement comes acceptance.

About Alanna Wong

Alanna has spent the past seven years dedicating her life to raising awareness for Kleine-Levin Syndrome (KLS) in an effort to help other sufferers. Alanna’s focus has been to raise funds for research, engage and connect with the community, and facilitate the KLS Foundation website. Alanna is writing her KLS memoir. You can read a FREE introductory section of her book here: Alanna has been featured in numerous media outlets including: Anderson Cooper, ITV London, Sunday Night (Australia), The Sun, The Daily Mail, and Seventeen Magazine (Singapore).


  1. Jenny says

    Hmmmm some illnesses have stigmas attached to them, such as mental health illnesses. Sharing those is not an easy thing to do and one can lose individuals as friends. People don’t want to learn about the illness. As long as “it” doesn’t affect them, their fine. Telling people about it, they usually don’t want to know.

    • says

      Jenny, I agree with you to a certain extent. I have extremely painful RSI which has plagued my life since 1989. It’s been and continues to be the greatest battle of my life. I don’t particularly hide it, but I don’t often talk about it, either. Mainly due to being a lone mother in a greedy and treacherous world where bullying is a norm! I live in Britain, by the way. But I do agree with the writer of the article! We have to ‘Own’ our disabilities and those that can’t/refuse to accept us for who we are, aren’t our loved ones. We instantly recognise good people that care. I am the eldest of six, most of whom conveniently have distanced themselves because they refuse acknowledge my difficulties in everyday life. I still love them, and I’m still their big sister, but their ignorance is their problem! I have enough of my own to deal with. I also have a brother with MHProblems! He’s the exception that see’s the truth, as I do with his problems! Raising awareness is extremely important. Keep your chin up and stick to the folks that love and understand you, just don’t be too upset by those that don’t! smiling at you, Roberta! Because I can

      • says

        I think it is so important to share challenges and struggles with others. Some people are not ready to hear, so one must be sensitive to how you share who you are and what you struggle with. When we share our own vulnerabilities and struggles, it gives other people permission to share, too. And everyone has challenges. I believe there is great healing by sharing.

  2. says

    Thank you for sharing you thoughts. Your post has made me away of this organization. Our family lives with an Invisible Disability know as ehlers danlos syndrome or EDS. I too have felt some of these pressure and issues expressed with in this site and your blog. I’m a dyslexic, though it is not a physical disability it is certainly invisible most of the time.

  3. says

    So well said! This rings very true for narcolepsy; there are so many misconceptions held by the public, and a huge number of people with this chronic neurological disorder often hear comments like ‘you’re just not trying hard enough’ or ‘you just need to ‘shake it off’/’get more sleep’/’drink some coffee’/’take vitamins’/’pray’ etc.
    I agree that speaking out and raising awareness is the very best way to change things for the better!

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