Cancer, Parkinson’s, Multiple Sclerosis, HIV…. you name any major illness and you can be 101 per cent certain there is a support network of gigantuan proportion out there. And that is such an important thing to have access to.
What can I say about ISS which I haven’t already before? To the outside world you appear normal upon first glance. The symptoms which are noticable, such as coughing, wheezing, in many cases even voice changes, can be attributed to other, more common conditions, or even ‘a smoke and booze filled night on the town‘.
My personal ordeal with ISS started 2001. I am certain I can safely speak not only for myself in this case, so like with others dealing with this condition, to begin with, we have been wandering through the mist for quite a while, sometimes even years. No-one could tell me what the actual condition was, initially I was wrongly diagnosed, medics had no clue what to do to offer a more durable solution, let alone what it actually is (I have had a top surgeon give up on me because he was at his wit’s end). Friends and family, as much as they try, cannot even begin to comprehend what it is I am going through. They feel helpless which occasionally brought (and still brings) on this feeling of frustration, upset and of being incredibly isolated. Strangers think I am ill, which, of course I am. It’s just not the common sore throat or too much alcohol and fags the night before. It has actually made me feel like an exotic exhibit, something to be umm’d and aaah’d over in the professional and private world.
For over 10 years I had nowhere to turn to. No-one to understand, to share my experience with. To know how those who also suffer from this damn disease are coping with the symptoms. No-one to vent to. And, no-one I could offer my help to, support and share my experiences with. Until April 2013, roughly 11 years after my very first dilation procedure. I was referred to Guri Sandhu, one of the leading experts in the field based in London. As you know, before having access to his expertise I had had to undergo so many dilations I have lost count, my trachea was split open and widened, a part of it was resected and all to no avail. But on 30 April I finally got an official, decent diagnosis to my condition.
I went on Facebook and found a support group which, I know sounds theatrical but, changed my world. At least the medical part of it. Finally, I was able to communicate, relate to, support and meet women having to deal with exactly what it is I am going through. I could, and can, vent about feeling pissed off or upset, share positive experience I have had, read about positive and negative situations of others and plain and simply be understood. There is nothing worse sometimes than hearing from “outsiders” ‘yeah I know what you are going through‘. I know, I know, helplessness, but still, not always easy for us to be understanding towards it. Particularly with worsening symptoms.
I have had so many well wishes by fellow ISS ladies, but these two most recent ones which are really heart warming to me:
I have just read your heartfelt and honest blog and it really touched me and brought a tear to my eye. I am just at the beginning of this journey having only had 1 laser treatment 8 weeks ago. (My follow up check up is tomorrow) but I already fear the signs are there that it has not worked totally, but I too feel the need to be cared for and long for someone to make this all better. I understand your frustration of how this condition can turn such normally strong, determined people into shadows of their former selves. I hate that it has the power to do that and I hate it more that I have seemingly no power to stop it doing it. I hope when I have to go through what you have recently accomplished that I can do so with as much strength of character that you have shown. I follow your progress with interest and awe. You are braver and stronger than you think and when times are hard, instead of trying to look too far forward, which at times can seem so unobtainable just look back and see just how far you have come and the improvements you have made. And for those tough, lonely scared times a comforting hug is sent your way. Stay strong and hopefully soon you will find your sync
Good to hear from you! I have had you on my mind wondering how you could cope with current reality. I recall you have a young son and must work, but friend, it IS so SOON. Your longings to retreat, to go home, to be taken care of, and being angry at all the impacts this illness has had on your life seem completely understandable! Predictable even. Heavens, your body and soul have been through so darn much! I wish you rest and healing. Wish I could give you a hug and help in some way. Sending warm thoughts and concern!
I am grateful to have found a platform, a support group (in my case Living with Idiopathic Subglottic Stenosis) which offers all these opportunities. At the same time I am also somewhat saddened and even a bit angered that this condition, along with other rare ones, receive so little attention. Social media and the internet have made access to these things much easier, but not everything is so well supported or understood. Cancer, HIV etc. are so present, in the media, possibly even in everyone’s life. I myself know people who have fought cancer, or are HIV positive. And not just because of my profession. So even though I cannot relate to their battles, feelings or experiences with whatever their condition, I have a certain understanding of the impacts of it, because of their media presence. As impossible as it probably is, I wish everyone with any form of chronic disease, be it wide spread or rarely seen, would have the chance to get not only the medical attention they would need, but more importantly, the emotional support in order to deal with all their disease and personal battle entails.