Mel Ifield refused to give in to her illness, until her body told her otherwise. Here she writes about her relief after her decision to come out of “the bathroom”.
I WAS diagnosed with Crohn’s disease in my first year of university. It came as a shock to suddenly get so sick. Sure, I’d grown up thin, with bouts of vomiting for no reason, but overall I was a healthy, athletic country girl. I’d never heard of anything called an inflammatory bowel disease before. It had a terrifyingly permanent sound to it – “disease”.
Over a period of time I was feeling “off” in the stomach. I would get strange pains when I’d eat and when I didn’t. Then came the internal bleeding and the dramatic weight loss. I lost 13kg in about three or four weeks.
I was bleeding internally, unable to eat and if I did manage food, I would lie in bed for hours afterwards feeling nauseous and frightened.
I quit my university course and went home and the investigations began. As did the trials of different medications and the periods of steroids to calm the inflammation when all else failed. It sounds so reasonable and clinical here, but it was not like that at the time. There were all the stages of grief, as I tried to come to terms with the frightening idea that my body harboured a disease. Sometimes I thought I’d never get past the anger phase of grief!
Throughout the 15 years I have had Crohn’s, it’s been a rollercoaster. I fought every inch of the way not to give up exactly how I wanted to run my life, only to find that my body had other ideas and I needed to concede in many ways to my reduced energy and vitality. This came as a painful shock and I kept my Crohn’s a secret from most people, as I was ashamed of my body. It had let me down. It had given in and was now “malfunctioning” and I wanted to disown it. The only way I could do that was not to talk about it at all.
This silence was something I hung on to for many years. Then one day, I started to get better. I researched all kinds of complementary therapies and meditated and attended things like tai chi and yoga classes. I went to chiropractors who believe in the power of the body to heal itself. Alongside the most amazing gastroenterologist, who planned every step of my medication with me, I have been able to toss away the steroids – hopefully for good! And I started to talk about my condition with others, to gain their perspective and to add my voice to their ideas.
This was an amazing thing for me. To come out of the “bathroom closet” and let it be known that I had a disease, that I wasn’t just malingering and in actual fact, I was doing well.
I still find my lack of energy a hard thing to take but I no longer hide the “why” from people I meet. It is a part of me and I only wish I had known the things I do now back when I was diagnosed. I feel it is so important for me to add my story to those already out there; to help take the message of IBD to those who have no idea what it means to suddenly find your body acting like a foreign entity, and to explain to those in my life how this destroyed my self-image, my confidence and my faith in my ability to do anything. I remember I didn’t want to try anything new because I was so afraid I wouldn’t be able to follow through, complete the project and see a final result.
While I have enjoyed a return to some levels of health, I still struggle to balance work with life and have taken leave from my office job in Canberra to pursue training in more flexible work. To do this, I had to end my lease and move to country NSW to afford to live. I enjoy a quieter life here, but I do find the four-hour commute to my specialist, chiropractor, health food store and friends somewhat difficult! However, I can either work full time or live. Currently, I appear not to be able to combine the two. I am hoping that part time or flexible working hours will alleviate this problem.
Where I now live, there are no support groups and no voice for those with IBD or IBS. Specialists are usually more than two hours away. Any medical treatment in Sydney is an eight-hour drive. It is a quiet and closed environment for those who have daily symptoms and struggle to maintain a healthy work/life balance.
I don’t like the idea of any one suffering in the silence of poor body image and pain and misery, which is why I hope to train as a CCA support team facilitator. Initiating conversation around the issues of Crohn’s and colitis is something I see of immeasurable value. I can’t imagine a better way to also make my own journey feel worthwhile.
Every voice counts, everyone’s story.