Hiding my disease

Graham Clements
Summary 
I was sick for many years. But I didn't tell anyone. I hid the symptoms from my family and friends. I tried to eat all the right foods. But I would still have to run to the toilet. I didn't know why I was sick. I visited many doctors. Eventually I went to a hospital to have a colonoscopy. The doctor said I had ulcerative colitis. There is no cure. I finally told my family about the illness. But I continue to hide the illness from most other people. I do not want their pity.
Posted by: 
Graham Clements on 19/01/2012
The sun is setting over a beach and a man is sitting on a bench looking downwards.
Sea of Sadness

I hid my illness.

I successfully hid my undiagnosed illness for years. I hid the illness from friends. I hid it from workmates and fellow students. I even hid it from my family. No one else knew I was sick.

I caught a virus

The illness started when I was working in Brisbane. A virus went through my workplace. The virus caused chronic diarrhoea. Some of my sick workmates lost a lot of weight. I caught the virus and needed a week off work to recover.

But I didn't totally recover. I used the toilet more often after the virus. Often I had to rush to the toilet. The unpredictability of my bowel movements made life difficult.

There was little supervision at my work. So no one seemed to notice my many trips to the toilet. But frequent sick days eventually led to my retrenchment. As I was unemployed, broke and sick I returned home.

Good at hiding

Amazingly, I managed to keep hiding my illness from my family. I did not want to add their worries about my health to mine. I became an expert at nonchalantly rushing past them to the toilet. Sometimes I did not arrive at the toilet in time. So I also became an expert at the quick and quiet clean up.

I tried a number of methods to control my bowels. I took the supplement psyllium. Every morning before I left the house I did exercises to try and completely empty my bowels. But I still soon learned the location of every public toilet in town.

My illness would come and go with varying degrees of intensity. Sometimes the symptoms would quieten for months. But then the illness could strike at the most inconvenient times. It struck on the afternoon of my diploma's first-year break up dinner. It also struck on the first day I went fruit picking.

Diagnosed

I did the rounds of doctors. From previous experience I had little faith in doctors. One doctor thought I had haemorrhoids. But haemorrhoid treatments did not help. Finally I found a doctor who said a colonoscopy should find the cause of my illness.

On the day of my colonoscopy a storm struck Wangaratta. The hospital power ominously flickered just as I was wheeled into the theatre. The colonoscopy revealed a severe case of ulcerative colitis. I left the hospital in a daze as I wondered what ulcerative colitis was.

What is ulcerative colitis?

Ulcerative colitis is an inflammation of the large bowel. It is similar to the more well know Crohn's disease. About 70,000 people have ulcerative colitis or Crohn's disease in Australia. The medical profession does not know what causes ulcerative colitis and there is no cure.

Impossible to hide

I reacted badly to being diagnosed with a life-long illness. My body also reacted badly to the prescribed drugs. It became impossible to hide the illness from my family. But I still frequently hide it from other people. I want to avoid their disgust, pity and toilet humour.

Readers comments (4)

It is disappointing there is such a stigma about some chronic illnesses and disabilities that people go to the extent of hiding them.
Sometimes being open about an illness or disability can lead to people being more supportive and understanding of your needs, especially at work and in social situations. Support and empathy does not necessarily mean pity.
I hope that one day you will be more comfortable with sharing your illness, and I hope it becomes more comfortable for you to accept and live with.

I would say sorry to hear that but that doesn't sound like the right thing to say to you.
It sounds to me, though, that you were unfairly dismissed.

But this is your way of coping I suppose, and only you can know what's right for you... but sounds a bit of a lonely way to deal with it...imo

Further to my comment above - I also think this article is an indication that there can be such stigmas about disabilities even among the disabled. Did you ever see a genetic or general counselor who would have provided you with some support about acquiring your illness?

Perhaps if you could have talked to your employer about why you were having such frequent toilet breaks, they may have been more accommodating and allowed some flexibility around your illness. And perhaps next time when you seek work, be up front about your illness. I actually wrote an article about employment and disability on DiVine that may assist you: http://www.divine.vic.gov.au/main-site/lifestyle/healthy-living/work-exp...

It is so very important for support to be provided to people with disabilities and chronic illnesses - to assist them with every day life. But I also believe, and I write this as a person with a severe chronic illness that I was born with - it is just as important for said people to communicate their illness and their needs. It makes life so much easier.

Carly, as far as I know, it was not the frequent toilet breaks that caused me to lose the job because I do not think anyone noticed. I was working in a very big warehouse with dozens of staff and it was rare to see a manager. But they did notice my frequent days off, when the ulcerative colitis just made it impossible to go to work.

Not all workplaces are full of understanding people. Many workplaces, like warehouses, have a good share of the emotionally immature who enjoy making fun of others. I regularly saw this happen in that warehouse.

Currently, I use a disability employment support service and I only seek jobs where I know I will have quick access to a toilet. Realistically, my illness should not interfere with writing and administration jobs which is what I am after. For that reason, I do not feel compelled to tell employers about my illness. I do not want to give them a reason not to employ me.

I see a specialist for ulcerative colitis at the moment. I still rarely mention my disease to my family unless it is active. Some family members understand, others do not.

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