Interview with Author Toni Whitley - Crohn's Disease, Career & Motherhood

Most women can balance career and family obligations with their hands tied behind their back but single mother, Toni Whitley did all of that while suffering through Chron's Disease. In the book, If You Knew How Regular I Am...You Wouldn't Be So Full of It: My 30 Year Secret Life With Crohn's Disease, Whitley chronicles how she dealt with her illness while raising a son and trying to maintain a career. A Superwoman indeed, Whitley took a moment to share parts of her life and the disease PR Trends.

Describe Crohn's Disease and how the illness affected you physically.
Crohn's Disease is a chronic inflammatory disease of the intestines. It's cause is unknown and there is no cure. Everyone with Crohn's (or Colitis which is a very similar disorder) has different stages of symptoms. Some have severe stages which may require multiple surgeries and some have less severe stages which may go years without any treatment at all. However, the symptoms which are usually common with both diseases are: stomach cramps, nausea and vomiting, diarrhea and blood in stool, weight loss, as well as joint pains and fatigue. Because they both are considered Irritable Bowel Disorders, they are also commonly aggravated by stress. Due to the symptoms, as well as the medications used for treatment, depression and mood swings are also side-effects.

How long did you keep this sickness from your family and why?
As the subtitle of my book says "My 30 Year Secret Life With Crohn's Disease;" that is about how long I kept it to myself. Since my relapse last year when I was immediately hospitalized after my annual colonoscopy and went out on indefinite leave of absence ; I have began sharing my story. My mother recently confessed that she thought over the years that I was exaggerating about being ill so often. Due to the fact that I have lived away from family for so many years, I was able to keep it to myself. Also, when I was originally diagnosed with this disease back in the 70's, my doctor told me that this was an embarrassing disease that most people keep to themselves and that is what I chose to do. After all, it isn't easy discussing your bowel activity to another person. I basically put myself in a position to be in deep denial of the disorder by holding it in for so long.

How did you maintain raising your son, career and focus on staying healthy at the same time?
Even though I was in remission for the most part of my son's earlier years, I have been fortunate enough to have had a job where I could take off from work in order to attend his school events. If needed, I was also able to take off to volunteer as a chaperone for many school events over the years. Being a single parent, it was very important to me to be at all of his school events since I was his sole supporter.

Take me through a typical day from the moment you woke up until you went to sleep during the height of your illness while trying to raise your children and work.
A typical day for me and my son during the time I worked was very hectic. My day would begin at 5:00 am. Once I got dressed for work, I would cook breakfast (I spoiled him at any early age so he was used to eating bacon, eggs, pancakes, etc for breakfast). Now he's old enough to cook his own meals. But after getting him dressed for school, I'd drop him off at latch key by 7 a.m. and be off to begin my workday. I worked long hours so it was normal for me to work 10 to 12 hours per day. After picking him up from the Boys/Girls Club by 7 p.m., I'd help him with his homework while preparing dinner. After dinner, it would be about time to get prepared for the next day and off to bed.

What is your current status with the disease ?
Currently, I am still out of work due to my illness. I am taking Remicade Infusion treatments (which can be very depressing due to the atmosphere of the hospital room that the treatments are given). The infusion room is also where chemotherapy and radiation treatments are taken. So being in a room where I know that the person sitting next to me may be dying from cancer makes me sad. It also lets me know how blessed I am because even though my illness is chronic and virtually diminishes your quality of life, it is not life-threatening. I also take the anti-inflammatory medications, as well as mood swinging drugs (Prednisone) which I never know when I'll go from cheerful to crying. As for the severe pain that I may encounter, I spend an awful lot of time soaking in a hot tub of water. I've been prescribed 'Vicodin' for the pain; but I really am afraid of becoming addicted to the pain killers so I prefer sitting in the tub which some days I may have to repeat several times during the day or night.

Why did you want to tell your story?
Once I was off of work and spending more time on the website with the various support groups, I was inspired to write my story because there was a huge need for it. On the websites, I was reading the stories of so many young people (mostly college age) that have just recently been diagnosed with this disorder and they really sounded suicidal by some of their comments. I felt they needed a story of someone (myself) that had dealt with the daily challenges of the disease and through determination, persistence and faith was able to reach my goals. Since most of the books dealing with this disease usually only discusses diet and eating habits, I felt a story was needed on the day-to-day struggles this disease can present.

What else would you like for our readers to know about Crohn's Disease and your struggle with it?
Another reason I wanted to bring awareness to the public of this disease is because as a Crohn's Disease sufferer, not only are you dealing with the medical and emotional aspects, but economic hardships is also major. Because the insurance carriers and social security disability does not consider this disease as chronic, a lot of sufferers are having major financial problems once their condition becomes so severe that they can no longer work. In my case, I have been on unpaid sick leave for more than a year now and still going through the process of appealing the insurance carrier's denial of my Long Term Disability request. Also, I am appealing social security disability's denial and am told by my attorney that it may take two years or more just to receive a hearing date for SSDI. Even-though I have three doctors that have consistently completed forms indicating my inability to return to work; I am being forced to go through this long-drawn out procedure of fighting for my benefits. I'm confident that they will eventually approve the claims, but in the meantime--it is a financial hardship that no one should have to endure especially when they are already dealing with an illness which is chronic. It is of my opinion that they take you through this long process of appeals, hoping that your financial situation will deteriorate to the point where you will have no other choice but return to work and drop the appeal.
I feel there is so much awareness needed of this disorder because there are about 2 million people suffering from Irritable Bowel Disorder (IBD) and although I have been blessed and able to get through this past year without losing my home and everything else, there are thousands of others out there that have not been that fortunate.

If You Knew How Regular I Am...You Wouldn't Be So Full of It: My 30 Year Secret Life With Crohn's Disease
Author: Toni Whitley
Format: Paperback (5x8)
ISBN: 9781425996598
Price: $12.99
Available at www.AuthorHouse.com

For more information about Crohn's Disease visit the following sites:
www.ccfa.org
www.healingwell.com
www.crohnszone.com