With two thirds of medical cannabis patients in Project Twenty21 identifying as male, what is holding younger women back from accessing what could be a life-changing treatment?
There’s a whole year of Claire’s life which she can’t remember.
Diagnosed with fibromyalgia while sitting her exams in high school, she was prescribed a dose of 1,800mg of gabapentin a day.
“I took my tablets in the morning and by 12 o’clock that afternoon I couldn’t tell you what I had for breakfast, that’s how strong they were,” says the 28-year-old.
“I don’t remember any of it. I failed all my exams. I even had a boyfriend that I don’t really know anything about.”
Claire’s battle with chronic pain began at the age of 13, when she fell off of a horse and broke her hip. The break wasn’t picked up until she underwent an operation three years later and the pain never fully subsided.
Claire has been experiencing chronic pain since the age of 13.
At the same time she was struggling with excruciatingly painful cramping – not just during her period – but was frequently dismissed by male doctors as having anxiety, or blamed for “eating too much dairy” or “just trying to get out of school”.
“I told my GP that I was struggling and asked if he could write me a note so I could get some support at school. When I got the letter from him he had written that I should try going to bed a bit earlier,” Claire adds.
“That’s just one of the stories I can tell you about being a young woman experiencing chronic pain.”
In 2015, after finally being listened to by a female GP, Claire underwent a laparoscopy [a surgical procedure required to diagnose the condition] and was told she had endometriosis.
By this point she had scarring all over her bladder, kidneys and bowel and the disease had progressed to such a point that she was told she may not be able to have children.
Claire says: “It makes you think, had they listened to me sooner could they have prevented that? I think the fact that I was also suffering from chronic pain and a hip injury, made them less likely to believe me, they felt that there was too much going on.”
The medical gender gap
According to a 2017 government survey, women reported a higher prevalence of chronic pain than men and studies have also shown that women supposedly experience more severe and frequent levels of pain, for a longer duration than men and are more likely to report migraines, musculoskeletal pain, and pain from osteoarthritis, rheumatoid arthritis and fibromyalgia.
Despite this, many like Claire do not feel they are taken seriously by doctors and research now shows that women are more likely to have their pain discounted as “emotional” or “psychogenic”.
“I remember how suicidal I felt, how pointless everything seemed,” she says of that period of her life.
“After I failed my exams I thought I’m never going to get a degree, I’ll never get a job. What is the point?
“I never experienced anxiety or depression until the chronic pain got out of control, but [doctors] were always trying to conflate that relationship.”
Claire did manage to go to university, but struggled to manage the workload and social life with her condition, eventually having to resit a year.
“I couldn’t go out so my social life was affected,” she says.
“It was really difficult just to be normal, I had to choose between uni work, sleep or friends, and sometimes I never had the option to do any of it.”
In her third year, with a prescription amounting to 480 tablets a month, a friend encouraged her to look into medical cannabis.
“At this point I was still very anti-drugs,” Claire admits.
“I’m a prim, piano-playing nerd and always have been, but I was struggling, I was in a lot of pain and I didn’t really want to be around anymore.”
Claire was able to climb the hill behind her house for the first time thanks to her prescription
With the help of cannabis Claire was able to come off all of her other painkillers. She completed a masters in psychology, set up her own business and now works supporting young people struggling with mental health issues.
Since January, Claire has had a legal prescription through Project Twenty21, which helps to subsidise the cost of prescriptions while aiming to build the UK’s largest evidence base for the safety and efficacy of medical cannabis.
Despite the fact it is this which has made all of her achievements possible, she is still wary of stigma when it comes to her professional career.
“I was really lucky [my manager] was open minded, but I am also very reserved about who I tell,” Claire says.
“If I was going for a new job I wouldn’t feel comfortable telling them straight away, because you don’t know what people’s perceptions of it are.”
This stigma could be holding other women back from accessing cannabis treatment.
According to data from Drug Science’s Project Twenty21, two thirds of patients enrolled in the programme identify as male, with only 29.3 per cent of those in the younger patient group (aged 18-25) women. But the number of female patients steadily increases with age and in the over 75s group, 63 per cent of patients identify as women.
This is at odds with the fact that women are thought to make up the majority of CBD consumers, with more than one study reporting that they are more likely to use the supplement than men and a survey from the Brightfield Group of 2,400 participants found that 58 per cent of CBD users were women.
So, why doesn’t this translate to those accessing a medical cannabis prescription?
Stigma in the workplace
Claire believes that it could be the fact that women are statistically more likely to hold jobs in health, social care and education where the risks of being associated with cannabis may be greater, even to the point it could cost them their job.
According to Government figures published in March 2021, 78 per cent of jobs in the health and social work sector and 71 per cent of jobs in education were held by women. Women are also more likely than men to work as employees and less likely to be self-employed.
“I work with vulnerable young people every day,” says Claire.
“My biggest fear was one of my students finding out and damaging my reputation and I think that’s a big barrier for a lot of young women.”
Jessica* works in education and runs the blog and Instagram account The Endo Monologues, where she documents her journey with endometriosis and adenomyosis. But even though she is a legal medical cannabis patient, only a select number of colleagues know about her prescription.
“My employer is not aware of my prescription and as it stands and I don’t think that I will be able to disclose this until the understanding and viewpoint on using medical cannabis changes,” she told Cannabis Health.
“Working in an environment that tout’s cannabis as being a negative thing plays a huge part of this as I feel it would be seen as contradictory on their part to be accepting of someone who uses it even if that is for legal medical reasons.
“I think it would trigger lots of discussions where I would have to defend myself, which is ridiculous as it’s my body, it’s having a significant impact on my health and wellbeing and it’s allowing me to work. I would love to be able to have conversations to educate people on it at my work but until the overall public opinion of cannabis changes, that won’t happen.”
She continues: “Using medical cannabis turns me into a pain-free functioning human being, so on my employer’s part I think they’re happy in the fact that I can work and not be restricted by my conditions. As far as they’re concerned, they think I’m using conventional medication to allow that and I’m happy to let them think that.”
Jessica admits that she had reservations about accessing a prescription due to what she describes as the “prejudice in her profession” and feels other women may be in the same position.
“Ultimately, I had to do what’s right for my health,” she says.
“From my standpoint my work doesn’t need to know, as it’s no different to taking any other legal long-term medication and it doesn’t impact my work performance. My only concern was and still is, that I could be penalised for not declaring it and potentially lose my job due to the attached prejudice.”
She adds: “Women have so much to fight against in the workplace already that adding cannabis to the equation is another battle to fight. It might be that you don’t need to declare it to your employer like me but for individuals who do, the ongoing prejudice is another barrier to overcome. We already have it ingrained by society that we must choose between a career and a family and can’t have both, cannabis adds another bias against us which is so incredibly wrong.”
Seeking validation
It could be that after years of being misdiagnosed and generally feeling unsupported by the medical system, women are less likely to seek out other healthcare professionals and may even experience trauma in medical settings.
Harriet, 25, who suffered severe endometriosis symptoms from the age of 11 until her diagnosis two years ago, was consistently told “this is just what periods are like”.
She now experiences severe anxiety in medical situations after more than a decade of not being believed.
“I have had both incredible experiences with health professionals and experiences that I could call traumatising,” she says.
“I’m usually quite a confident person but in medical situations I am so terrified I can’t speak. I believed them after years of being told that I had a psychosomatic disorder, when actually I had endometriosis and a spinal condition.”
Harriet has also now been able to access a medical cannabis prescription, through Project Twenty21. She says she finally felt validated after her initial appointment with the prescribing pain consultant.
“I can understand why people with chronic conditions may feel defeated and may not want to seek out another health professional,” she says.
“I was so scared my mum had to sit with me in case I froze. But it was one of the most pleasant experiences I’ve ever had with a medical professional. I felt listened to and validated.”
With millions of patients facing even longer delays to their diagnosis journey, as waiting lists swell in the wake of Covid-19, many who are suffering could be benefiting from medical cannabis.
“There is an endometriosis crisis in this country at the moment, particularly as a result of Covid-19 – I know people who are on waiting lists of up to five years for surgery,” says Harriet.
“I think medical cannabis could be the answer to that, but there is so much stigma to overcome.”
Harriet sees the gender gap which we know is present in the medical system, reflected in the emerging medical cannabis space, where she says support groups feel “male dominated”.
“There is a gender gap in medicine, but you can also see it in the medical cannabis space,” she says.
“We need to hear from more women, particularly those with endometriosis and reproductive conditions. People who were assigned female at birth are facing double the stigma, as a woman who uses cannabis but also a woman in pain, we have to battle with that old trope of the ‘hysterical woman’.”
Harriet adds: “Cannabis is not a magic wand, it hasn’t cured everything but it has given me a quality of life and allowed me to function as a human being. I want to see women talking about how it helps them.”
A sentiment which Claire echoes.
“I want to advocate for this medication, it really has changed my life and that’s why I don’t mind talking about it,” she says.
“The more people who say ‘I can do this and still do my job and so do millions of other people around the world’, that’s what’s going to change things.”
Find out more about Project Twenty21 here
*Some names have been changed