Angélique is in her mid-twenties. She has been living with pain for more than half her life. It all started when she was eleven: since then, Angélique has been plagued by constant joint pain – sometimes mild, sometimes severe. Her thoracic vertebrae often shift slightly. Then Angélique feels pain as if she has been stabbed in the back. The pain radiates throughout her upper body. At times, her hip locks up when she walks, making even simple movement an ordeal. Her joints also frequently dislocate painfully – even with simple movements like sitting down. For the girl, this marked the beginning of a marathon of doctor's visits – from orthopedists to rheumatologists – but no one could truly help her. The constant pain leaves Angélique often tired and exhausted. While her friends are out and about, playing sports, or socializing, she sometimes can't even manage to complete her homework.
No understanding from the school
Because pain is her constant companion, Angélique develops a chronic pain syndrome. She has to take a "cocktail" of high-dose painkillers and muscle relaxants, which, however, provide little relief. Sometimes she is unable to attend school for weeks at a time. Neither the school administration nor some teachers and classmates show any empathy for Angélique's situation: "I later learned that a teacher repeatedly asked in front of the class if I was 'playing truant.' That hurt me deeply. And the school administration also showed no understanding for my absences due to illness," Angélique recounts about the injustice she suffered. Even worse, however, is that some of her classmates, and even people in her immediate circle, think she is faking it. "Because no concrete illness could be found for years, I was repeatedly told: 'It's all in your head.' It got to the point where I no longer believed myself." Sometimes I would lie in bed at night and wish I would simply not wake up the next day.
Is cannabis self-therapy discovered by chance
Angélique first came into contact with cannabis at 16 through her circle of friends. Out of "youthful curiosity," as she puts it. The effects amazed her. While her friends became calmer after a joint, she felt active and energetic for the first time in a long time. Cannabis soothed her pain and relaxed her muscles: "Finally, I had the energy for enjoyable things again – like meeting friends or singing in my band."
Angélique began self-medicating with CBD and THC. When her medication didn't work, she smoked a joint. This was because the effects kicked in faster during an acute pain flare-up than with other methods of administration. Not everyone approved of her self-treatment: "My mother comes from Bavaria, where the laws regarding cannabis are very strict. She had reservations about my cannabis use, and we argued about it constantly. My rheumatologist at the time was also login staunch opponent of cannabis. She seriously claimed that my pain was caused by cannabis use. Yet cannabis was the only thing that truly helped me. Such ignorance and prejudice from the medical community is appalling. They prescribe organ-damaging medications with countless side effects and then tell you that cannabis is addictive," Angélique says, still incredulous. She therefore hopes for the swift legalization of cannabis for everyone in Bern – especially for people with serious illnesses. And better education about the positive effects of cannabis on many illnesses for doctors and the general public through transparent, independent studies. Coverage of the costs of (self-)therapy with approved cannabis medications or cannabis by health insurance companies is also on Angélique's list of demands.
Finally, a diagnosis!
In 2014 – Angélique was 18 years old – her condition finally received a name: Ehlers-Danlos syndrome (see box). Angélique has the most common subtype: hypermobile EDS, which is almost always associated with severe pain for those affected.
But even though Angélique now knows what she's suffering from, it doesn't help her – quite the opposite. Knowing about her illness, the constant pain, and the lack of understanding at school drive the young woman to burnout. "I was completely exhausted, both physically and mentally. I took a leave of absence from high school in the middle of my eleventh year. Shortly afterward, I started inpatient rehabilitation in Rheinfelden. Thanks to psychological support, physical therapy, and the new, supportive environment, I gradually began to feel better." It takes Angélique a full year and a half to recover. The burnout and the subsequent therapy helped her to better accept her illness and to put some traumatic experiences behind her.
In the summer of 2016, she felt strong enough to return to school. She decided to change schools and enrolled at the Wettingen Vocational School. From the beginning, she informed the school administration about her illness – and received a great deal of understanding and support. " It felt so good. I was able to start fresh without false suspicions and accusations. The teachers were kind, and so were my classmates. Three years later, I passed my vocational baccalaureate at this school with a grade of 5.8."
Looking positively towards the future
Thanks to her long rehabilitation and her self-medication with cannabis, Angélique is now able to look to the future with optimism. "I've learned to say, without feeling guilty: Today I need a day of rest." Although she still experiences pain and the associated bouts of depression, Angélique plans to begin a distance learning program in graphic design soon. She is currently recording an album The Shains "Music is my outlet. In my songs, I can talk about my feelings and experiences with a certain distance – for example, about the terrible thoughts from the past when I didn't want to go on living. But thankfully, those times are over."
