Friday, 16 December 2011

Invisible Illness Visible?

Yesterday I attended a hospital appointment to get the results of various tests I'd had done over the last three months. The tests included a 24 hour heart halter and a tilt table. The results of these tests concluded that I have POTS, or it's full name - Postural Orthostatic Tachycardia Syndrome. It's an autonomic disorder which means some of the functions that should work automatically in my body, don't. For instance my heart rate goes too fast sometimes, evidenced by the heart halter when I was sat at home in front of the TV. There are many things this syndrome does. I feel dizzy and lightheaded for little reason, I struggle to sleep and live with headaches and migraine. These are just a few of its effects.

POTS is fairly common within people living with Ehlers Danlos Syndrome. Even though I have both these disorders I live my life as many other people without them, do. I work full time, I socialise, spend time with my family and try to write. Some days these things take it out of me more than others, but I don't let it dictate who I am.

It is on this point that I wondered about the visibility of invisible illness. My Twitter profile and this blog tell of the illness that no one can see. My thoughts on putting it out there was to connect with people who live with and understand the disorders. Twitter has been great for that. Yesterday though, as I thought about blogging the results I questioned the reasons or need to put this information out there. Should I leave the information visible, thereby raising awareness of a little heard of disorder and champion invisible illness in an small voice fighting stigma, or should I remove mention of it and live my life in spite of two disorders that attempt to restrict me?

What do you think of seeing this information, either as a well and healthy person or as someone also living with invisible illness?


  1. As another POTSie/EDSer... we can use every voice in our fight for awareness. It's important. I definitely think that you should put it out there. Wishing you the best...

  2. I think it's important to know about people's illnesses and disabilities and why there may be certain restrictions on their way of life. To know that they have a genuine illness and are not just moaning makes a difference to the way people might behave towards them. Sorry to hear about your problems, hope you get all the support you need. xx

  3. The more people with invisible illnesses, like me, and you, put ourselves in the public eye, the more information becomes available to others.

    For example, while much of my blog is devoted to my COPD (which has earned me a couple of accolades from the medical profession), and other wide-ranging disability issues, earlier this year I began a series called Chronicles of the Heart, about the trials and tribulations of dying from a pair of incurable heart conditions (on their own not too serious; together, disastrous), and it has proven to be among the most consistently popular things I've ever written.

    It's not exactly a barrel of laughs, and when I started I hadn't expected to still be here, but as long as people are happy to read it, and I'm able to write it, I'm happy to carry on.

    Really, especially when it comes to health matters, and particularly with relatively rare conditions, there's no such thing as too much information - just so long as that information is accurate, it can be as personal or impersonal as you want to make it.

    In my experience, though, personal sells better, quite possibly because people feel able to identify with the writer, and also because they know there's a real person at the other end, quite possibly going through what they're going through.

    Apologies if I've rambled on a little - it's not a good day.

  4. I think it is good to share the positive side of your life. Wishing you good health in 2012.

  5. talk is good. Sharing experiences even better... You never know who you might be helping... Happy Christmas!

  6. If you're comfortable sharing then I think you should. I'd never heard of either of the conditions you suffer from until I started reading your blog. Awareness is the first step to understanding.

  7. I think it is usually best to be open with regard to a "hidden" illness - unless one is in danger of losing one's job because of that.

  8. I come down on the be open side of the fence - though easy for me to say perhaps, not having a medical condition.
    You help other people - and may find help and support yourself.
    So good for you on the first point.

  9. I think it's important that, if you are comfortable with doing so, you write about your illness, for at least 2 reasons: 1. to raise awareness (rather like @aeroplanegirl re her condition of which I was equally ignorant) and 2. because it's part of who you are.
    There are some folk who blog/tweet *a lot* about their problems but you're one of the most positive-sounding people I've got to know through Twitter. And it's your blog so you go ahead and write what you want to!
    All the very best for 2012. Let's hope it's the breakthrough year for us both.

  10. Kassady - Thank you for your comment. I think I will leave it there. I can still live with it, strive to live my life and still make it visible.

    Margaret - Thank you. I hope that people see me for who I am and not the illness that walks within me. I don't want a big placard around my chest, but yes, I do think it should be visible. Thank you for your comment.

    Ron - Thank you for stopping by and your kind comments, you certainly didn't go on. I appreciate you sharing some of your own journey. It is good to know people out there are living in spite of these things. Thank you.

    Glynis - Thank you. The majority of my life in positive, luckily, and I am conscious that people don't come to read to become fed up with what they see. I hope that the way I share, in the few times that I do, that it's open and informative rather than gloomy.

    Pat - Thank you. That's a good point. Not everyone talks about these things if they're affected but reading can be sharing. Thank you.

    Sarah - Thank you. That's what I hoped for. Informative rather than anything too depressing.

    Barbara - Thank you. I've also been open at work and things seem to be ok. It would seem open is the way to go :)

    Blackwatertown - Thank you. It's lovely to read such positive comments.

    Janet - Thank you for your kind words. I sometimes wonder if I drone on, on Twitter, so it's good to know it's not perceived that way. Both the reasons you mentioned are exactly the reasons I have blogged. It is a part of my life, the way I live it, but if I can show that I can carry on living as well, then that's good for me. Here's to a great 2012!