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crohn's disease and chronic fatigue: 'you become someone at the mercy of your own body'
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vanessa jolin tells herself that "life is still beautiful" despite crohn's disease and chronic fatigue.
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vanessa jolin was diagnosed with crohn’s disease when she was just 11 years old. now, at 36, vanessa is forced to contend with the many symptoms and side effects of living with a chronic inflammatory bowel disease.
around the time she was diagnosed, she was also diagnosed with an abscess, which is a pocket of puss, and a fistula, which is a tunnel-like passage that develops between internal organs or body cavities into the skin’s surface. after treatment, she was lucky enough to experience a lull in her disease for 14 years. all things considered, she got to experience a relatively typical teenage life.
then, at the age of 25, her condition took a turn for the worse and chronic fatigue set in.
“i am often off work because of the chron’s disease,” she said. “(i have) back problems, chronic fatigue. i feel like i’m being eaten away by a cancer that will never go away, and every day, that brings me stress because i don’t know what state i’m going to be in.”
chronic fatigue driven by her crohn’s disease is especially hard to manage because of the heavy toll it takes on her ability to live her life. she cannot make long-term plans. she cannot commit to almost anything. she cannot do anything her body and mind will not allow her to do.
“it’s difficult to predict life when you live with chronic fatigue. you become someone at the mercy of your own body,” she said. “you wonder what you did to deserve this.”
living with chronic fatigue and crohn’s disease
when vanessa was planning her life, she dreamed of becoming a social worker. she started studying at the university of montreal to get her degree so that she could dedicate her career to improving other people’s lives. unfortunately, her crohn’s disease had other plans.
“i had to give up,” she said.
vanessa is incredibly driven, but her ability to accomplish what she wants to is severely hindered by the fatigue she grapples with. every day, she has to pick and choose which activities she can engage in because if she plans to do more than her energy levels can handle, the fatigue may take over without warning.
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“for example, cleaning can lead me to do nothing afterwards because it took all my energy,” she said. “so, i can’t plan an outing with someone, a friend, because in the morning, i can be okay, and after the cleaning, i have to cancel.”
because she cannot be as reliable for others as she would like, vanessa has lost friendships. her work life has also suffered, even though she notes that the people she works with are “very compassionate for people who have health problems.”
along with the loss of friendship and work, the stress she endures leads to other health ailments that she has to deal with on top of it all. the consequences of her fatigue affect her financially, emotionally, and physically. and it all adds up.
“it drains me emotionally. i become depressed because life moves, and i am running behind and trying to do like everyone else,” she said, continuing that she can’t keep up because she’s often bedridden.
her financial situation is a significant source of stress, with resources all but impossible to find. because she can’t work due to fatigue, she has called on others for help and support while she tries to recover from the symptoms so she can return to her life. her gofundme page provides one avenue for receiving assistance, but it is not always enough to help her get by.
“it’s one of the worst consequences of being forced to count your pennies. i am able to endure the pain of the disease times 20, but having no financial resources available anywhere, i find it horrible,” she said.
she continued, “being tired all the time, it’s a part of your soul that goes away, and every day you try to find it, but it’s no longer there. the disease has changed me.”
leaning on support to get through it all
while vanessa has lost a lot, she’s still grateful for the things that remain. her friendships, which have been up and down due to her condition, are one thing that allows her to connect with individuals who see her as a person outside of her disease.
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“people rarely stayed when the boat sank, but i discovered more great people during my life with huge hearts who respected who i was,” she said.
she also has a partner who she has been with for 14 years, as well as a dog, both of which provide her with emotional support. she knows that while she lives with fatigue and other consequences of crohn’s disease, she doesn’t have to go through life alone.
“my spouse is understanding,” she said. “he loves me and understands the situation. i’m happy to have it because otherwise, i don’t know what i’d do. i came across a person with a heart.”
she continued, “sticking to people who have hearts and who make me laugh is also helpful. laughter relieves many ills.”
staying optimistic against all odds
vanessa grapples with the severe impact of crohn’s-driven fatigue on a daily basis and the overwhelming pressure it puts on her in all areas of her life. but when faced with these adversities, she still manages to focus on the bright side and do everything she can to combat fatigue and its consequences.
“i am still incredibly lucky to be born in canada. and to have access to specialized doctors for free, state-of-the-art tests and devices, drugs at a cost of thousands of dollars for free or almost free,” she said.
because of her ambitious nature, she also chooses to have faith in herself and push herself on days when it feels like she can’t go on.
she will practice meditation and sleep when she needs to, giving her body and mind time to rest while incorporating other relaxation techniques, such as taking hot baths and listening to calming music.
she pictures herself travelling because she loves to travel when her body allows it. she dreams of becoming the “girl full of energy” she used to be, following through on projects and ambitions. and she hopes that in the future, her ability to fight fatigue will be met by medical advancement.
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“i encourage myself a lot by telling myself that medicine is evolving and that maybe i will be entitled to an even more innovative treatment that will eliminate fatigue, which plays on my morale and my optimism. i also tell myself that life is still beautiful! i just have to adapt,” she said. “trying to live in the present moment is also helpful.”
vanessa also wants people to know that invisible diseases are very real. the more people understand what people living with them go through, the better off everybody will be.
“from the outside, we may not look sick, but inside we are hugely,” she said. “we have a will to be like others, and we can be rejected sometimes. it’s already difficult (and) i think that we all have the right to a quality life.”
the quotes in this article were translated from french correspondence with vanessa jolin.
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