Patient Voices: Margaret – “I’m too young to run out of options”

Margaret had run out of treatment options and had just lost her job due to Covid-19, when a cannabis prescription gave her a glimmer of hope.

“People talk about cannabis being a last resort, well for me it really was,” says Margaret, 39.

“You reach a point where you have very few treatment options left, and I’m too young to run out of options.”

Margaret was eventually diagnosed with hypermobile Ehlers Danlos syndromes (hEDS) at the age of 34, after years of being made to believe the pain was caused by anxiety and “all in her head”.

“It was a relief to get a diagnosis, I’d been sick for a really long time and they couldn’t find an explanation,” she says.

“But there are not many treatment options for hEDS. Physiotherapy is pretty much the only management the NHS offers, and then medication to treat the various symptoms. 

She adds: “I won’t bore you with the number of medications I’ve been through over the last 20 years.”

The condition causes chronic pain and crippling muscle spasms, as the muscles try to hold together weak joints. 

Having once been an athlete, Margaret’s symptoms have become more severe with age and now how active she is varies considerably from day to day. 

“Even after living with this for most of my life, it’s somewhat unpredictable in how EDS can affect me day to day,” she explains.

“Some days I can walk unsupported but can’t go very far, others I need a walking stick or crutches, and on the worst days I wish I had a wheelchair.” 

Among other conditions, Margaret also has gastroparesis – where the stomach can’t empty itself of food in the normal way – IBS and several food and chemical sensitivities. And her mental health issues including anxiety, depression and PTSD can be just as debilitating. 

“Trying to manage complex conditions is a full time job,” she says. 

Originally from New York state, Margaret’s doctors had suggested she try cannabis through the state’s medical programme, but knowing she was due to move to the UK where it was still illegal, she didn’t sign up. 

Arriving here three years ago with her British husband, taking the risk of accessing cannabis illicitly was never an option for her. In the extreme, being caught in possession of cannabis as an immigrant could result in deportation. 

Then at the beginning of the coronavirus pandemic last year she was made redundant from her job as a junior solution architect in the automotive industry, and her symptoms spiralled.

“I had a really hard time managing things after that,” she says.

“My pain got worse, my anxiety levels were increasing and my gastroparesis was flaring – everything was just really bad.”

When Project Twenty21 opened up for applications in the summer she signed up within the week, with her husband supporting her to help fund the prescriptions. 

Margaret with her medical cannabis vaporiser.

“I could finally afford to try this, to see if I could get some quality of life back,” she says.

“But my journey to cannabis has not been a straightforward one.”

Margaret learned she was intolerant to the MCT oil carrier used in the medicines prescribed through the programme and struggled to find a strain which managed all of her symptoms. 

While CBD flower was good for her anxiety, it didn’t relieve her pain and indica strains helped her sleep better but weren’t suitable during the day. 

One product even heightened her joint pain, triggering a flare, while improving her mental health. 

“It was definitely frustrating,” says Margaret.

“I think a lot of people come to Project Twenty21 expecting an immediate result, but that’s not really been my experience.”

But cannabis did lead to a marked improvement in her gastroparesis and Margaret describes being able to eat fresh fruit and vegetables, without getting sick, for the first time in years.

“Being able to eat proper food again was a big win,” she says.

“Gastroparesis has been there in the background for the last 12 years. I’ve had to avoid fresh and raw food, have very small meals and go on a liquid diet for months at a time. For the first time in five years I can have a salad and not end up sick for three days later.”

She adds: “It’s definitely meant that I can eat healthier food, which will eventually have an impact on my condition because nutritional deficiencies have a huge impact on EDS.”

Since the beginning of the year, several new cannabis based medicines have been added to Project Twenty21, and six months on, Margaret has found the right medication combination to successfully manage her symptoms. 

“My mood, baseline pain levels, activity levels, focus, sleep quality, and digestion are all much improved and my gastroparesis is the most well managed it’s been in at least 10 years,” she says.

“I actually understand the epiphany of sorts many patients experience when their conditions are actually managed with minimal side effects. 

“But it took time and effort to find what works for me. You see so many success stories, but behind each of those was time spent finding which strains, strengths, and ingestion methods work for the individual.”

PLEA’s (Patient-Led Engagement for Access) Patient Working Group has been a huge support for Margaret throughout this time.

She explains: “Having that peer support helped me realise that there were other options if something wasn’t working. They’ve really been a great group of people to bounce ideas off and to try and figure out what to try next, they’ve even helped with things like learning how to vape.”

After joining when the group was launched earlier this year to ensure patients have a voice in the developing medical cannabis sector,  she recently took up a role on the organisation’s management committee to help drive their mission forward. 

“I’m excited to keep working towards ensuring there is a patient centred industry and advocating for NHS access,” she says.

“In the cannabis space, there can be a lot of competing motivations and it can get really overwhelming. Having a group of people around you, who share the same goals is important. It gives you a safe space.”

While cannabis patients are often subjected to stigma from others in society, Margaret says she has even faced push-back from other patients for accessing a prescription privately.

“I’ve had people yell at me and attack me for having the funds and being able to speak out about getting a prescription,”she says.

“There are some very strong opinions in the cannabis space about how patients should be able to access these medications, but every patient has their own story and it’s really sad when they attack each other. 

Margaret adds: “It’s important for us to work together, because we all have the same end goal, which is for patients to have access to medical cannabis.”

In our Patient Voices series, we’re sharing the stories of members of PLEA’s Patient Working Group. Read Eppie and Gillian’s stories

Find out more about the PLEA patient working group here & visit pleacommunity.org.uk  for further resources