The following interview is with Sophie Lee who has published a book about her life with Irritable Bowel Syndrome, IBS. I find her story compelling. Does it resonate with you?
Q: What made you write this book?
A: More than anything, I just wanted to tell the truth about IBS. There are so many myths about IBS: that it only causes diarrhea, that it’s not very painful, that it’s a mild inconvenience, that it’s a psychological problem, that it’s caused by stress…I could go on. It’s such a misunderstood problem, and sufferers themselves are often too embarrassed to talk about their symptoms openly. Luckily for me, I think the embarrassment wears off once you’ve had IBS for a few decades!
I wanted to write about what it’s really like to have IBS: how it affects every single aspect of your life, how bad the pain can be, how difficult it can be to travel or to work. But I also wanted to offer some hope, because my IBS has been much better over the past few years due to a diet and supplement regimen that works for me.
I was also disappointed at the range of IBS books currently available. The vast majority of IBS books are written by doctors, and some of them are excellent, but it’s not the same as having someone say, “I know how you feel, because I’ve been there.”
Q: What do you think is the hardest part of living with invisible chronic illness while you are growing up and developing who you are?
A: One of the most difficult things for me was the way that the illness made other people see me. When you turn down every travel invitation, every weekend away, when you can’t drink alcohol and can’t eat at certain places, when you cancel plans at the last minute or seem miserable and tired when you do turn up, then people begin to see those things as part of your personality rather than part of your illness. If that’s how you always behave, then that must be who you are.
I still struggle with this sometimes, and I want to scream “It’s my IBS that’s making me this way, it’s not my fault!” But things are better now that my friends and family understand more about the limitations of IBS and how it affects me, and I hope that people no longer think that I’m naturally grumpy and dull!
Q: At what point did you start thinking about how living with illness should impact your career/work direction?
A: I went through a terrible time in my first ever full-time job when I was in so much pain so often I thought I was going to have to quit and go back to live with my parents. I managed to struggle on with the job, but I hated the travel I had to do for work because it would always mess up my intestines.
My second job was a little better as there was no travel involved, but my ultimate goal was to find a way to work from home. I knew that even if I could just about cope with office life I was never going to be happy there – too much anxiety about access to a toilet, too many afternoons spent in pain. If I could work from home then I would have my very own toilet and much more control over my hours. I was very lucky to find a way to work from home over the internet, and this has made my life so much easier.
Q: Do you have any suggestions for others about what they should think about in doing this?
A: To be honest I realize how lucky I am in being able to work from home; not everyone has this option open to them. But I think the most obvious mistake I made, looking back, was to be so secretive about my illness at work. I tried to keep the entire IBS situation to myself, when I would have been much better off being honest about it and asking for help if needed. I suspect, for example, that I would have been allowed to stop traveling entirely for my first job if I had just explained why, but I couldn’t bring myself to do it. I should have been honest and trusted my employers to help me rather than hiding away in fear.
Q: Is there anything else you want to share here?
A: I’d like to say to anyone with a chronic illness that I hope you are feeling well today, and that you find the strength you need to cope with whatever life throws at you, be it your symptoms, your doctors, or those pesky healthy people who like to give us so much advice!
Sophie Lee’s book, Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome, is available — http://www.ibstales.com/sophies-story.htm
You can also follow her on Twitter: http://www.twitter.com/ibstales
Belinda says
Maybe I’m too sensitive about the wording but just want to highlight that you called her disease in first paragraph as IBD which it’s not. The cover on her book calls it IBS.
See link with definitions.
http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm
IBD is much more intense/serious even though I can appreciate that both can be debilitating diseases.
I personally have experienced alot of struggles because people get confused and think I have IBS and therefore think I can just ‘fix’ it with a diet or treat it more easily but IBD is more difficult to treat than IBS apparently.
Just my 2 cents coming from some frustrating personal experiences 🙂
Sherril Johnson says
Great article, Rosalind! It inspired me to do a blog post: http://theiciexperience.blogspot.com/2011/12/new-ibs-book-sophies-story-my-20-year.html.
Rosalind says
Hi Belinda, Ler’s start with ‘too sensitive’. I don’t see this as you feeling that I personally insulted you. You’re pointing out a big error I made. I’ve been unable to get back online until now and I will make that change immediately. FYI – I do understand the difference. I had ulcerative colitis (IBD) for 5 misery laden years until surgery eliminated my colon (leaving me with an ileostomy) – I posted this when my brain was a little in brain fog from recent surgery (working with chronic illness again?) and got the acronym worng. That said I don’t think any chronic illness is less or more than another. Having had more autoimmune diseases than I can’t count on one hand, I believe the ‘seriousness” lies int/ depends on how hard it is to keep the symptom level ‘down’. I appreciate your frustration with how people respond. I found most of these diseases are poorly understood by healthy people. And it’s esepcially frustrating with people offer advice that that is irrelevant.
Thank you for sharing. Rosalind
Rosalind says
Hey there Sherril – I love that this inspired you. Thanks for writing.
Steve Gerard says
For whatever reasons, drug abuse or substance abuse is not uncommon today among adults. Children are just emulating what they have learnt from the adults. Adolescence is an age or rather state of mind when one becomes vulnerable and sensitive to different situations. As a responsible parent, you must be aware of you’re children’s whereabouts. The only way you can find fun and enjoyment in life is not through drugs or alcohol and you should make your kids understand that.
You are not a kid anymore. You have started making your own decisions, taking responsibilities, choosing between right and wrong. You are smart enough to understand what is good and bad for you. Alcohol and drugs does nothing for you. No, it is not the way to have fun in life. Popping a few sleeping pills just because your friend does is not a smart move. These substances have additive chemicals which does the magic. Your parent would not suspend you of doing drugs ever; you are smarter than them to hide the stuff away that no one can ever guess.
restaurants says
This is very interesting, You are a very skilled blogger.
I’ve joined your feed and look forward to seeking more
of your excellent post. Also, I have shared your site in my social networks!
company logo design says
Appreciating the dedication you put into your
site and in depth information you offer. It’s nice to
come across a blog every once in a while that isn’t the same old rehashed
material. Wonderful read! I’ve saved your site and I’m adding your RSS feeds to my Google account.
music 5000 olympia says
This blog was… how do you say it? Relevant!! Finally I’ve found something that helped
me. Kudos!