“Please don’t be afraid to tell your story – it will inspire others”
As you all know, I’m very open about my health struggles, and I’m not afraid to show the reality of living with chronic illness and mental ill-health. I believe it’s so important to have this open discussion, and the majority of the time I receive positive feedback about my blog. But sometimes I have to deal with unwanted attention and judgemental comments. Here’s what happened last week.
I recently wrote about how intrusive and invalidating unsolicited health advice can be. Although most of the feedback from this post was supportive, one comment missed the point completely.
Someone wrote on this particular blog post, that if I kept my ill-health to myself, and didn’t discuss it openly, I wouldn’t get unwanted advice. She said: “Keep your health issues to yourself, it is no one’s business but yours and your drs. Do not bring it up.”
This person was implying that I should expect unsolicited advice if I openly discuss my health. Where do I even begin with this ignorant comment?
I refuse to sit back and be silent. I refuse to hide my health challenges to make healthy, non-disabled people feel comfortable. I’m not ashamed of my chronic illnesses or mental ill-health, and I should not have to hide this to appease others. And, just because I share my story openly, I shouldn’t have to put up with unsolicited advice about my health.
What would life be like if we all kept our health challenges to ourselves? How isolating would this be? How would we learn more about treatment options, or coping strategies? How would we educate the healthy population? How would we get our voices heard?
My reply was simple; ‘I discuss my health openly online so I can raise awareness about some very misunderstood illnesses. I shouldn’t have to hide my ill-health just so people don’t hassle me with unsolicited advice.”
Why I’m open about my health struggles
Although I shouldn’t have to justify my actions, I would like to explain why I’m open about my health struggles, and why I think you should be too;
- To give myself a voice in a world that chooses to ignore me
- To connect with others in the chronic illness community. Let’s face it, living with a chronic illness can be isolating and lonely
- To raise awareness of some very misunderstood illnesses
- To educate and correct the many misconceptions surrounding invisible illnesses
- To let others know they are not alone
- To empower myself and others
- To show there is no shame in being ill and sharing your story
- To share experiences, and exchange knowledge about possible treatment options and coping strategies
- To give hope
- Because writing and being part of a community gives me a purpose
- And most importantly; Because I want to, and that is my choice
Comments like these only serve to strengthen my resolve. I will never feel ashamed to tell my story, and neither should you. We gain confidence through our shared experiences.
No one should be made to feel ashamed for talking openly about their health. In fact we should be encouraging this discussion. There is so much stigma surrounding chronic illness and mental illness. The only way to tackle this stigma is to create an environment that encourages and supports an open conversation – this in turn will raise awareness and correct misinformation.
Support from my Twitter friends
As always, I received great support from my Twitter friends. Here are a few of their comments;
“Whether you write for yourself or for awareness, it’s your choice. You should never have to hide away just to appease some people. If they’re not happy, they’re not worth your energy. You don’t have much of that to spare.” @DespitePainBlog
“Our existence is uncomfortable for the healthy. We are ill without explanation, without treatment options, and without old age. If it happened to us, it could happen to them. Hence, I think, the hostility.” @chance_randi
“I always find it amazing how many individuals wish we didn’t share our chronic illness & mental health experiences, which we do 2 raise awareness in as many channels as possible. Thank u 4 sharing, u r beautiful & courageous & u work so hard 2 raise awareness of this vile illness” @hooks_n_threads
“If it weren’t for people writing about health conditions, what awareness would there be?
The internet gives us a platform. We need to use it.” @DespitePainBlog
“A surprisingly ableist response where you have to change your approach to your health because someone else doesn’t have the sense to see this behaviour is inappropriate. I find their response disappointing but also quite sad that they may themselves feel they have to hide it.” @CarlakCoach
“Raising awareness is important. For all of us. So: thank you! Writing openly about your illnesses is courageous and honest.” @joy_pops
“Wow. What a nerve to say that! You do right, you shouldn’t feel ashamed discussing your chronic illnesses and mental ill health openly. 💙” @MJayne_21
If you would like to follow me on Twitter and join the conversation, please click here.
Why I share my story
Lastly, I would like to share with you something that happened earlier this year which perfectly illustrates why I share my story openly, even when it’s exhausting at times and leaves me open to criticism and negative attention. It may seem insignificant to some, but those of you that live with a highly misunderstood chronic illness like ME/CFS, who are often mocked in the media and face disbelief everywhere you turn, will understand.
In May, for ME awareness month, I was featured in three different newspapers, and it was exhausting. First the interviews, then anxiously waiting for the article to be published not knowing how I will be portrayed, then dealing with all the comments from their readers, some of which are inevitably derogatory. The impact of all this extra activity caused a big crash, and I spent some time questioning whether if it was worth the negative impact on my health. Should I just concentrate on resting?
But then something happened to remind me why I share my story.
I had a care worker visit who I hadn’t seen in a couple of weeks, and she excitedly exclaimed “I saw you in the paper”. She proceeded to tell me she had no idea how complex ME/CFS is – she thought it was just fatigue. After reading the newspaper article she found my Twitter account and read lots of my posts.
We spoke for ages about ME (Myalgic Encephalomyelitis) and the impact it has on my life. She now says she has a better understanding of the illness and how to care for me. She also said she continued the conversation with her family.
This is the reason I share my story. If I can educate just one person, they can educate others. If I can introduce many people to the realities of living with ME, then maybe over time the stigma will be reduced and ME will finally be accepted for what it is – a devastating illness that destroys lives. And maybe if they, or a loved one, experience the same symptoms in the future, then they will be better prepared to get a diagnosis.
Please don’t be afraid to share your story, you have the potential to change lives. Your voice can make a difference. Words are powerful, and so are you. Our combined voice can make a difference.
I would like to say a big “Thank you” to everyone who supports me, I couldn’t do this without you 💙
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You never know who you might help by sharing your story 🙂
Very true. Thank you for sharing your story too, it has definitely helped me.
Hi!♥️ Thank you so much for writing so openly about your illnesses! It must take alot of courage, and I’m impressed of your strenght. I have M.E, my mother has fibromyalgia, we both love your blog.♥️ You’ve helped me without knowing, so I thought I should let you know how much your writing means to me, and hopefully this will help motivate you to continue writing your blog. I’m very grateful to find someone who understands. I meet a lot of ignorance, people don’t belive how sick I actually am. I’m housebound, struggling to educate even those closest to me about my diagnosis and how M.E. affects my life. I’ve found many good ways to explain to those who doesn’t beleive how M.E takes over our lives (and leaves us barely surviving) from your blog. I hope you know that you are important, that you help alot of people. Thank you for enduring the negative comments, I hope you can feel that the good you do- the help you give others- outweights the negative.❤🧡💛💚💙💜💗
Thank you for your kind words Ida, it means so much 💙
As I said on Twitter, if we don’t talk about our health conditions, who will. Nobody will do the talking for us. Nobody else will try to bring awareness. I’m glad that you were able to be strong enough to fight back against that comment. It would have knocked many people back and made them stay quiet.
I’m so sorry you had that comment, but at the same time, it’s led to this. And I think it’s a really important issue to approach not just because of ignorance, but because people have different views and these can also vary with the likes of culture and age (as stereotypical as that may sound). My parents were bought up not talking about things, and to them, health always used to be a private thing, nobody else’s business. When I got ill, and I started blogging and talking about it, they said it was a good thing to do, and that’s great. But it challenged their own opinion that health should be private; they then understood the benefit of speaking about it and sharing your story, both for the individual doing it and those reading it.
Where ignorance is concerned, I do wonder why people feel the need to say negative or insulting things in telling you not to talk about it; maybe they should be advise of the old adage of ‘if you have nothing nice to say, say nothing at all’. I do worry sometimes and I’ve had things said before that have made me wish I never said anything. It’s like a kick in the face when you’re trying your best and doing what you think is right. As you say, it’s not easy to speak up or face any kind of backlash, but don’t let they keep you down, down let it discourage you.
You do a wonderful job in sharing the reality of living with chronic illness, Jo. You inspire, you encourage, you provide support and tips and show people they’re not alone. What you do by speaking out is incredibly valuable, utterly priceless.
Caz xx
Thank you for your kind words of support Caz
This is so bad and I like you will not stop sharing my story when I was originally given a diagnosis of CFS/ME that was what started me on my journey of awareness, it hasn’t stopped and won’t stop while I have the ability to keep shouting about it and neither should you xx
Great points. I tend to be open on the internet and not as much is real life, and that’s created a barrier between me and others in past. I’m working on becoming more open.
Thank you for writing this article. You have definitely inspired me to do more when it comes to telling my story.
What a tosser (not you). What a trooper (most definitely you). That is all.
Thank you Naomi