Chronic illnesses, language barriers and French health bureaucracy

Advice from a Canadian in France who suffers from chronic illness

Some feel like they are unheard over their long-term illnesses in France
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Eight doctor appointments into the new year, Emily Ann Robinson, a 39-year-old from Vancouver, has seen six doctors to maintain her health due to symptoms caused by her three chronic illnesses. 

Canadian doctors diagnosed Ms Robinson with her first chronic illness, Hashimoto’s thyroiditis, a few months before she moved to France during the pandemic. 

Aside from dealing with this diagnosis during a big transition in her life, the illness meant her newly earned certificate as a yoga instructor lost significance, as her symptoms worsened.

The symptoms of the illness left Robinson constantly exhausted and weak. During the first few months of the diagnosis, she spent over 18 hours each day in bed. 

“I was not feeling well enough to live outside of my bed,” she said. “I would get out of bed to teach online yoga classes in my loungewear and pyjamas.”

Ms Robinson’s life before her diagnosis included working in tourism while she travelled. 

She met her French partner in Vancouver during the 2010 Winter Olympics. They met while working in the service industry in the athletes’ village.

The Canadian speaks French, although she said she struggles to keep up with the doctors at her appointments. Luckily, her French partner takes the day off work for most of her appointments to help translate. 

“I would not have been able to navigate the French medical system without my partner,” Ms Robinson said. 

Her partner helps her make appointments, and set up her Carte vitale and her mutuelle. The stress of obtaining all of these administrative necessities was exasperated by the novelty of her chronic illnesses, and the fact she had to learn about the French medical system and her illnesses, in a whole new language. 

“I feel like, after all these years, I still have a lot to learn,” Ms Robinson said. 

 Read more: Health insurance in France: what you should expect to pay per age

Three different chronic illnesses

During the first month of her move to France, Ms Robinson was able to get a colonoscopy, which helped doctors diagnose her with her second illness; lymphocytic colitis. 

She said scheduling a colonoscopy in France proved to be much easier and faster than in Canada.

 Read more: Wait to see health specialists grows in France: here is what to expect

The colitis leaves her struggling with digestive issues, triggered by the diet that makes France so appealing to the rest of the world. 

She said she had an easier time finding food in Canada because of the range of cuisine she enjoyed in North America. In France, she finds her options limited. 

“When you go to a restaurant or a friend’s place for an apéro, it tends to be quite traditional, so includes gluten, dairy, and alcohol,” Ms Robinson said. “If you weren’t going to eat those things, you probably wouldn’t have anything to eat.” 

The illness makes it difficult for her to culturally assimilate with her partner’s family. She said some gatherings have been awkward because she refused food that would cause issues for her.

“You draw more attention to yourself, and [refusing food] will reflect on you as a person,” Ms Robinson said. “They don’t connect it to my illness, they connect it to where I come from.”

Finding doctors to help

Finding English-speaking doctors has been an impossible task for Robinson, who now lives in La Ciotat, a town about 35km outside Marseille, where she teaches yoga to other Anglophones online.

Ms Robinson said she looks for her doctors on Doctolib, and on Facebook groups. However, after living in France for more than three years, she said she has never had an English-speaking doctor. 

Finding appointments with specialists is easier in France, she believes, which has allowed her to find a gastrointestinal specialist to diagnose her colitis much faster than in Canada. 

“While medical appointments can vary greatly depending on the location and specialist, in my experience, it has been quicker here,” she said. 

Though finding appointments is easier in France, not being a fluent French speaker left Robinson feeling helpless about her diagnosis. 

She was also diagnosed with Raynaud’s phenomenon, a disease that affects circulation. She said although doctors are willing to help, only having a rushed 15 minutes to explain her symptoms in the best French she has makes her anxious before her appointments. 

Ms Robinson became intolerant to one of the medications she was prescribed, and she went to the doctor to explain her symptoms. She said she felt unheard. 

“No one was listening to me, and I felt like I was put in the corner,” she said. 

She describes her care for her chronic illnesses in France as “cyclical”. Her doctors would prescribe a medication that was not helping her symptoms, and when that did not work, put her on more medications. 

They told her to continue taking the medications that made her feel worse.

“At some point, it just feels like you’re dealing with someone who doesn’t really care about your long-term wellbeing.”

Another difficulty of being a non-French native with a chronic illness is that prescriptions and treatments do not always translate. 

Her treatment in Canada did not align with the protocol in France, and she ended up spending over €1,000 on supplements to be shipped from Canada, which was not a sustainable form of treatment. 

“At the end of the day, it’s a matter of what I have access to and what I can afford,” she said. 

‘At the beginning, it won’t be about the Illness’

Finding doctors, pharmacists, and supportive friends and family were the first steps Ms Robinson took when she first moved to France. 

She said that as long as you are not comfortable with speaking French when receiving healthcare, friends, family, and partners who speak French are essential to their care. 

“At the beginning, it just won’t even be about their illness. It will be about settling into their country and finding ways to reduce their stress.” 

The carte vitale also poses issues for people who move to France, as it can take up to a year to receive. 

Meanwhile, you must pay pay out of pocket for each doctor's visit and prescription, to be eventually reimbursed later. 

Being chronically ill takes a lot of time, money, and energy, all of which can be overwhelming for someone who just moved to France. 

“The first thing they can really do for themselves is get their name in the healthcare system, and get enough rest,” Ms Robinson said. 

Though navigating the healthcare system was hard, she said she takes full advantage of its benefits.

“See as many doctors and get as many tests as you can. Get all the help you can. Every little bit counts.” 

100% reimbursement for chronic illness

Recognised long-term illnesses in France are known as affections de longue durée (ALD) and those suffering from them make up about 20% of the population, or 13 million people. 

Unlike other patients, who are only partially reimbursed by social security payments from Assurance Maladie and must cover the remainder through top-up insurance, most people with an ALD have their medical fees reimbursed at 100% of the basic state rates.

They do, however, still have to pay the additional fees (dépassements) some medical professionals are allowed to charge over and above the state rate, as well as such non-reimbursable elements as the franchises médicales (levies taken off medicine reimbursements to fund the health service) or the daily forfait hospitalier fee for stays in hospital.

Read more: Long-term health patients fear reimbursement reforms in France

It is important to be aware, too, that not all illnesses that we may see as ‘long term’ fall under the official category. In 2011 the Health Ministry established the ‘ALD 30’, a list which covers all illnesses that may allow sufferers to claim exemption from co-payments. 

You can read more about them in our article below.

Read more: How do French healthcare costs change for long-term illnesses?