Last week we posted a blog regarding the use of IBS cards (Cards such as the 'Can't Wait' card which helps IBS and IBD sufferers to gain access to a toilet, in a store or similar). Sadly this post did not fully explain our perspective, hence this weeks blog explands upon the original post.
The post was intended to discuss the relative merits of the card, however it was very clear that we had a strong bias and it ended up being a piece that really did not achieve its objective. So this weeks blog will be a more open explanation of our feelings towards the card, without the pretence of balance.
Valuable
We received a couple of very well considered comments regarding last weeks post which we feel we should reply to before posting our repost. One of the comments stated that surely it was better to have the card than to not. We could not agree more with this sentiment. The very point of last weeks blog was meant to be about the unique physical and psychological ways that we deal with IBS. The variation in opinion regarding the card is a case in point. For some that card will be of great comfort and assistance, therefore its validity is not for us to demean.
We must also say that we have no personal experience of using the card, and therefore are in no position to judge whether or not it works. We are sure it must do as many people have these cards for IBD, however we have never tried to use the card and therefore can not comment on just how useful it is in a practical setting.
IBS and IBD
The main thrust of the blog came form a discussion with fellow sufferers who did not like the idea. It must be stated at this point, that IBD sufferers, in particular Crohn's sufferers felt the card to be a great help, there was a big gulf in opinion between IBD and IBS sufferers. The dislike of the idea came from a small group of IBS sufferers, that does not mean that it in any way represents all IBS sufferers.
It must also be stated that the card was bought up initially in a negative context, and it would be reasonable to assume that some in the group may have simply followed the argument proposed.
Off the fence
The following passage is an entirely personal perspective and goes some way to explaining the bias shown in last weeks post. This is not derived from any other sufferers, this is my own personal perspective.
The primary motive behind last weeks blog was to highlight the gulf in difference between what works for some and what works for others. I have suffered IBS from birth with it completely dominating large chunks of my life. In the last few years I have overcome it, however what has driven me to distraction is the vast levels of poor advice I have read and received over the years. The advice has been well intentioned, however none of it acknowledged that my IBS may differ from someone else's IBS.
IBS is not one thing. It is an excessively broad term for a cluster of symptoms, so for any site, or product to claim to cure it, is in my opinion nonsense. IBS still covers symptoms such as diahorea and constipation, which by and large should not be treated the same way. As a result of all the years of frustration I can be quite hostile towards anything that does not sit with my world view.
To the card
The IBS card drew my ire, as it instantly made me think that who ever created it, did not understand me or my symptoms. They did not understand how I felt about my IBS, nor did they understand about the practical reality of my IBS, it put me off the website entirely. I repeat again here that this is my personal opinion and that the validity or use of the card is not in question, this is my own personal reaction.
When I look for help with IBS or I am looking for comfort, I am looking for empathy and understanding. I have never been impressed by the medical professions attempts to deal with IBS, Doctors always mean well, however this is a very complex condition. Therefore I look for the help of fellow sufferers who understand.
The condition is generally intensely private, I know of few sufferers who broadcast their condition. This is the key area for me, whilst some may be happy to brandish the card, I would rather spend the time taken to explain the card to locate facilities elsewhere. The mere thought of having to explain the situation generates anxiety, and when time is the essence a conversation is best avoided.
On a more general level, I am a private person who shares my condition with few. I dislike moaning and complaining, I like to get on with life and my IBS is something that I just have to live with. The card represents a submission of my privacy, few people who do not have the condition truly understand the nature of it, so why should I expect them to. Whilst I acknowledge that is wrong of me to be embarrassed about my condition, I am, therefore this card does not sit well with me.
On a practical level, as an ex store manager, I would like to know how many companies know about this card and would circumvent their strict security procedures to allow a customer with a card that few would recognise into their staff areas ? Whilst I understand that some may, I'd be interested to find out how widespread the knowledge is about the card amongst store staff.
Pavlovs Dog
After a life of struggle I can happily say that for the last few years I have been in control of my IBS. I have not cured it I have managed it. Not for one second would I say that as a result I have the answers, I have simply found the answer for me. With help from fellow sufferers I created the IBS-Health.com website as a free resource for sufferers. Some articles may help, some may not, however hopefully you may discover something that helps amongst all the various opinions featured.
The site was a reaction to the IBS card, for those who felt that it was not right for them either. The site is written by sufferers for sufferers and the content looks at everything from diet to psychology. The whole point of this blog, of the website, of everything is to help people to find the best way of living with IBS, if the IBS card works for you, then that is fantastic, if it helps one person or thousands that is wonderful.
IBS can condition you over the course of your life and dominate your day to day thinking. I let it dictate so much of my life that I am very angry about those lost years, however I am absolutely loving the life I have now that I have it under control, I am evangelical about this. Whether you use our site, or the IBS card, start making the changes everyday is precious.
Click here....www.IBS-Health.com
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