Evie Nevin is a political and disability rights activist. She is a member and former election candidate of the ¹Social Democrats party and hosts ²The Zebra Mom Podcast, where she speaks with neurodivergent and disabled women. She has ³Ehlers Danlos Syndrome, a genetic connective tissue disorder which causes the production of faulty collagen. She has been on a ⁴waiting list to see a Pain Management Consultant since June 2017. The condition can potentially affect every system of the body and causes frequent joint dislocation. Evie’s main struggles are chronic pain, chronic fatigue and she faints easily and struggles to stay upright for very long, as it can cause her heart rate to increase and blood pressure to drop (a result of ⁵Autonomic Dysfunction, a co-morbid condition linked to EDS). Last year she was also diagnosed with Autism. May is ⁶EDS Awareness Month. Twitter: @evie_nevin / @thezebramom

How has your experience been, working on The Zebra Mom Podcast?

I started the podcast because I wanted to provide a platform for women who have disabilities and/or who are neurodivergent, because we are so rarely given a seat at the table. Life is hard enough being a woman but then adding disability, chronic pain or neurodivergency brings a whole host of extra challenges. This podcast is a space for women to highlight their struggles and the struggles of their own community. It’s early days, but I have already learned a lot from my chronically ill peers. We share so many of the same experiences as well, so it is nice to connect with people who can empathise with you.

Can you please give us a summary of your experiences having EDS diagnosed?

Getting diagnosed was a very long journey. Obviously I was born with the condition and while I had challenges growing up, the pain didn’t start until I was fourteen. Then by eighteen to nineteen, it was really problematic and the fatigue and digestive issues also kicked in. I went to my GP who diagnosed me with depression and anxiety. I tried so many antidepressants, but nothing was working. I went through some very dark times during that period because I was told it was all in my head and from my perspective, there was nothing to be done to fix it. Then in 2009, I was pregnant with my son and the EDS progressed again. We figured it was just typical pregnancy stuff, but it didn’t get any better. In fact, my pain and fatigue got much worse. I was sleeping so much. Then in 2012, I was interning for a newspaper and ended up interviewing a woman with Ehlers Danlos Syndrome. 

Everything about her story resonated with me. She spoke about having to travel abroad for treatment. I was telling her about my own issues and she gave me the name of a knowledgeable Doctor in Cork who may be able to help. I brought the idea of EDS to a new GP who said it was unlikely, as EDS “is as rare as hen’s teeth”. But in November 2013, I was diagnosed with EDS and Postural Orthostatic Tachycardia Syndrome. It was bittersweet. In one sense, I was relieved I finally knew what was wrong, in the other sense I was facing a life long condition and my children had a 50% chance of inheriting it too. My son was diagnosed with it a year later.

On March 9th, you tweeted a photograph of prescription pill packs, saying:

“This is 224 opiate based pain meds for the month. Then add the 224 paracetamol

I take too. This only just takes the edge off the pain.”

How does using cannabis compare to conventional prescription medicines, for EDS?

There are many EDS experts who recommend cannabis as a treatment for pain. I have asked Consultants in the past about possibly getting a prescription but they said at the time the guidelines were not very clear and that my condition is not on the list of approved conditions for a prescription for medical cannabis. The problem with long term opiate use is that you can develop all sorts of problems as a result. You can develop respiratory problems and I happen to have been diagnosed with asthma. You can have issues with your hormones etc. Also, with EDS, you can metabolise drugs very quickly and you can develop resistance extremely fast too, meaning you may have to move to stronger drugs and of course, without seeing a pain specialist, I can’t get anything stronger than Tramadol.

I have used cannabis before and even if it didn’t completely kill the pain, I was in a far better mental state to cope with it.

Last December 14th, you tweeted that the government needed to expand the Medical Cannabis Access Programme for patients with chronic pain. You said:

“High doses of opiates are far more dangerous than marijuana.

I developed a chronic respiratory illness and need regular organ function tests because of all the meds I’m on.”

Do you see the current government expanding MCAP in the near future, or generally reforming our cannabis laws?

I have hope that we will see the decriminalisation of cannabis within the next decade. I believe it should be legalised and taxed. But at the very least, it should be an option for people who live in chronic pain, where conventional medicine doesn’t allow the patient to live pain free.

Have you contested the fact that EDS isn’t regarded among the conditions approved for medical cannabis under MCAP?

I tried to sit down with Simon Harris when he was Minister for Health to discuss the overall situation for patients with EDS. The HSE isn’t being truthful about the lack of expertise here in Ireland. I had planned to speak with him about medical cannabis too but unfortunately, that never came to fruition. Once Covid has subsided, I plan to try with Minister (for Health, Stephen) Donnelly. An interview I gave on the subject was read out in the Dáil at one point too.

When did you first become interested in cannabis?

I think every Irish teenager comes across it at some point, but I didn’t realise the potential it had for pain management until much later on in life, once I had heard EDS experts talk about it.

What are your personal preferences in terms of how to use cannabis?

The CBD buds I buy. I smoke. I am a frequent buyer from ⁷Little Collins.

While it doesn’t help with pain, it does help relax me a bit; enough to cope.

In July 2018, you spoke at Macroom Townlands Carnival about whether Ireland should legalise cannabis with ⁸TD Gino Kenny (of People Before Profit), ⁹Vera Twomey and ¹⁰Thomas O’Connor. How was this discussion received at the time, and do you feel that public support for legalisation has grown since that time?

It went down very well. I remember the Gardaí were standing at the back of the tent listening in for a few minutes, but then they left and didn’t seem bothered at all. I think everyone in that tent was on the same page, at least about decriminalisation. I think more and more people are coming round to the idea of legalising it.

Do you know a lot of people who use cannabis recreationally or medicinally?

I know a few people who do use it medically in other States where it is legal and they say it does help.

Has political and disability rights activism significantly affected or changed your view of our government? What are some of your current areas of focus in activism?

I became politically active during ¹¹Repeal and campaigned as Disabled People for Choice, as disabled people were spoken about rather than spoken to. That led me directly into politics and I decided to run for election because I see nobody in local or national politics who looks like me or has the same experiences as me. My main focuses at the moment are housing, healthcare, adoptee rights and generally any issues that disproportionately affect minority groups. I’m very much about “nothing about us without us”.

Thanks for your time, Evie! All the best!

References

¹ Find out more about the Social Democrats here – https://www.socialdemocrats.ie/about-us/

² Check out The Zebra Mom Podcast here – https://anchor.fm/thezebramom

³ Follow this link for more information on Ehlers Danlos Syndrome –

https://www.ehlers-danlos.org/what-is-eds/

⁴ This extremely long wait was mentioned in a recent Evening Echo interview with Evie, at this link

https://www.echolive.ie/corknews/arid-40290170.html

⁵ Autonomic Dysfunction is explained in detail at the following link –

https://www.ehlers-danlos.org/information/autonomic-dysfunction/

⁶ Check out my interview earlier this month with fellow EDS patient, Milly Gilbert, at this link –

https://greenlensblog.com/2021/05/25/milly-gilbert-20-05-2021/

⁷ Check out what Little Collins have on offer at this link – https://www.littlecollinscbd.com/

⁸ Find out TD Gino Kenny‘s thoughts on cannabis in this recent Irish Examiner debate piece here –

https://www.irishexaminer.com/opinion/commentanalysis/arid-40284671.html

⁹ Check out my interview with Vera Twomey here –

https://greenlensblog.com/2020/11/25/vera-twomey-cork-21-11-2020/

¹⁰ Here’s a 2013 article from The Kerryman with information on Thomas O’Connor‘s Free My Weed campaign –

https://www.independent.ie/regionals/kerryman/news/free-my-weed-29731231.html

¹¹ Here’s an article on The Journal detailing the 2018 victory of the Repeal the 8th campaign,

following a national referendum on the right to have an abortion in Ireland – https://jrnl.ie/4034416