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“I’ve had to struggle alone against an ocean of people who don’t understand and who think that I go to play while on the toilet,” says Vanessa Jolin, who has lived with Crohn’s disease for more than 25 years.

Vanessa’s struggle and isolation started in 1998 when she was 11 years old and living in Montreal. She had abscesses in her anal region. She was very pale and her growth was delayed. Fortunately, after treatment for the abscesses, she had 14 years of good health. 

But in 2012 when she was 25, she started having back pain. She was diagnosed with ankylosing spondylitis, a more severe form of arthritis that can cause the vertebrae of the back to fuse. It affects 2-3% of those with Crohn’s or colitis. In addition, she started feeling tired all the time.

Since 2012, she has had more difficultly managing her Crohn’s – multiple biologic drugs have failed, and abscesses in the mouth and around the anus have appeared. 

Underlying all the other symptoms is unrelenting fatigue and pain in her back and anus. Vanessa says: “I feel like I’m 85 years old. I’m in pain - and I’m tired, tired. Always tired.”

As a result, she needs to take ‘never-ending’ leaves from work. Initially, she felt her managers were skeptical that she was ill. Only when she provided medical documents did they start to understand and are now supportive.

Speaking about being a person with Crohn’s in the workplace, she says:

“I would like employers to have compassion, that they be flexible and open to hiring those who are vulnerable."

"We are already ‘victims’ of a life we don’t want. Work is a place where we can flourish and is a form of therapy at the same time.” 

Since 2022, Vanessa has been diagnosed with Perianal Crohn’s, a complication of Crohn’s that along with the usual symptoms, includes inflammation around the anus. Symptoms may include pain, swelling, bleeding, ulcers and fecal incontinence.

She explains the impact on her: “It happens that I have sudden urges. I find there is a lack of compassion in stores – ‘Sorry, you can't use our washrooms, they’re reserved for employees.’ I have had occasions where I have defecated on myself. Now, I use adult diapers.”

Of course, adult diapers and clothing she can wear with them are additional costs while she has difficulty staying at work. Then there are additional expenses related to diet, as she has been encouraged to follow a gluten free diet.

These expenses are more of a challenge for Vanessa because she lives in Carleton-sur-Mer on the Atlantic Ocean, in the Gaspésie Region of Quebec. 

Summarizing how she feels, Vanessa says: “I have come to live at the mercy of my own body that I don’t control. It can get worse and you don’t ever know when it will happen. It’s a sword of Damocles every day.”

On top of the physical impacts of her Crohn’s, she continues to face misunderstanding. People regularly tell her she does not look sick - even family members.

In the face of these regular annoyances, Vanessa is determined to do her part to push back against the misunderstanding: “I’m determined to continue speaking out. I think it’s important to try to make yourself seen – for everyone who suffers in silence on their own.”