09/07/2026
Over the summer I had some time to try and think about the direction of the Guysborough & Area Endometriosis Support Group going further, and unfortunately I will have to bring the groups to a pause for the time being. And I want to explain why.
The reason isn’t that the group hasn’t been successful, because it has in many ways - friendships have formed, other endometriosis support groups have and are popping up (Antigonish with the Antigonish Women’s Resource Centre and Margaree with Cabot Alliance for Endo & CPP- yay!!), a couple of group members were successful in getting surgeries and had access to peer support while navigating those journeys, and there’s even a WhatsApp group where we can stay connected outside of the groups to continue to support each other. On top of that, some media attention was given to the groups which also helped shine a light on a condition 10-15% of women and those AFAB suffer with, and raise awareness around it.
However, the intention of the group when I started it was for it not to only be a peer support group, but a group where a bridge is built between those suffering with endometriosis and the broader community. And unfortunately, after over a year of running the groups, that is not something that has happened.
Other than a couple of groups, I haven’t had anyone, other than my own family members and a representative from the Antigonish Women's Resource Centre & Sexual Assault Services Association, attend who lives in or is from the Guysborough area. All the members who have attended have come from Antigonish, Mulgrave, Bayfield, and Port Hawkesbury. Even some of their family members have attended the groups and shown support. After the year mark, it was getting harder to find people to attend, leaving me to reach out to multiple people to ask them to come. Unfortunately the last group I hosted in June, no one attended.
The thing is this - endometriosis patients are at a high risk of feeling and experiencing isolation due to the stigma around discussing some of our symptoms and how often we have the medical community, peers, family, the workplace, and even society at large downplay our pain and symptoms. Although building peer support is crucial, so is building a bridge between the broader community. There won’t be any effective change for endometriosis patients unless those living without the condition begin to rally around and help build communities centred around care. However, this burden for change and advocacy is often left on the patient.
I’ve received a lot of encouragement about the groups from the community, however, at this time we need more than encouragement - we need action. We need a community to come around these women and girls to create support systems for them. This work can’t fall on the patient’s shoulders alone.
The thing is, those with endometriosis, and even chronic conditions in general, don’t have the privilege of being passive observers in our own lives, and the world won’t change and things won’t improve until each person sees their responsibility and duty toward building community and supporting those in their communities at an individual level. Community doesn’t sustain itself and if we want to build a strong community for everyone, then the people creating these spaces can’t be the only ones carrying them.
And after spending time the past few years volunteering, organizing and taking part in community initiatives in the Guysborough area, I’m noticing a theme where people love the idea of having something in their community, but when it comes to supporting that thing, that where it falls flat. Unless you have certain connections within the community, it takes that much more work to generate support. Mind you, I grew up and went to school, worked, and lived in this area my whole life practically, other than a few years off and on in my adult life where I lived in the HRM area.
This became very apparent in an endometriosis talk I organized for Endometriosis Awareness Month in March. The talk was geared towards community leaders, health professionals, and elected officials who are in positions to create change. And yes of course, it was geared towards patients too, however, most patients already know the struggle and desperately need those in positions who can bring about change to listen and work alongside them to do just that. Out of all the Municipality of the District of Guysborough councillors only one showed up. And out of the health professionals in the area, only one showed up. Everyone else who attended other than my family and a representative from the Antigonish Women’s Resource Centre, were women who suffer with endometriosis who travelled from the Truro and Pictou area (and a big thanks to them for attending - you rock ladies!).
That’s right, these women drove upwards of 2 hours in crap weather to attend the talk, yet no one from the Guysborough area attended.
Don’t get me wrong, I’m incredibly grateful for the funding provided to me by the Municipality to host the event, but what endometriosis patients need is more than funding for events, we need community support. We need leaders who are engaged and working alongside us for change. We need community members who are willing to sit at the table with us and ask us how they can help us build better supports in our own community.
And in over a year of running the groups in the area, that hasn’t happened.
Frustrating? Yes. Especially when I see other initiatives in the area getting community support, and not saying they don’t deserve the support because they absolutely do, but why is it some do and some don’t? I mean this isn’t a rare condition and is just as common as diabetes. Why don’t people see this as an important cause to support? We have girls and women giving up dreams of finishing school/college/university, getting a career and having families as they are contained within a cycle of pain and suffering they are having a hard time escaping due to the lack of adequate resources available for them.
And then on top of it both Greg Morrow for Guysborough-Tracadie and Michelle Thompson for Antigonish have shown little to no interest in meeting with the groups. Michelle, the Minister of Health, outright declined to meet as she gets her information from CEOs and doesn’t deem patient’s lived experience as something important enough to listen to. Greg never outright declined, but when asked when would work for him, I’m never given a clear answer, just more or less that he’s busy.
This is also frustrating after listening to Greg say in a speech this summer about not ignoring suffering and the first hand accounts of those affected by injustice, and how important it is to listen to those accounts - yet it seems that it’s only important once it becomes history. Why do we have to wait until something becomes history to say “we should’ve done more” or that “this is wrong.” Why are those who are suffering now being ignored? Why don’t our voices matter and why do we have to fight so hard just to have our voices heard?
For chronically ill people, the battle isn’t just in the medical offices, it’s often with society at large. We don’t live in a world centred around care and as a result, those who need the most care suffer the most and often are left carrying all that responsibility alone on their own backs while also being crushed under the weight of their illness.
As someone who spent 5 years of hell watching my life completely be ripped from me and there was nothing I could do. It was terrifying. As a patient who had my whole life turned upside down and who fought hard to get out on the other side of it all, I understand the formula for change. Because despite how hard I fought, I wouldn’t have been able to do it without the help and support of those around me. Community and connection is an absolutely crucial part in this formula, but unfortunately it’s the thing most at risk in present day society, especially a society that is becoming more and more individualistic and self-centred.
Care requires collective action. It requires moving out of our comfort zones, beyond convenience, and into a space where we collectively sit down and face pain, suffering, insecurity, and the inadequacy within our current systems and society head on and come up with solutions together.
So, that being said. As someone with a chronically ill body, who went boots on the ground the minute I got the care I needed because I didn’t want to see others get to the point I had to receive the care I needed, I’ve hit a wall. There’s a lot of invisible labour involved in organizing and sustaining a group like this, and I have to recognize and acknowledge when it’s too much for one person to carry. And it’s too much, especially where I’m still trying to work on my own financial stability after a half-decade of an incredibly hard physical, mental, emotional, and financial struggle where years of going without proper care finally reached a head.
This isn’t good bye. It’s just a break until I can figure the best way forward. Maybe it’s holding the groups in another area that’s more central for the attending members, maybe it’s holding it out here at my studio in Giant’s Lake, maybe it’s expanding the groups to include all women’s health conditions and concerns, or maybe it’s something entirely different.
And I don’t want this to come across as me being overly critical or complaining. I’m simply sharing what I’ve learned from this experience, along with my observations. For a support group or community initiative like this to thrive, it needs more than the people directly affected by the issue, and that’s just something that isn’t happening here, despite how much effort I’ve put in to try and make it happen.
But right now I don’t need to have that figured out. I’m not someone who believes in forcing growth for the sake of growth. Sometimes something needs a different environment, a different format, or simply some time and space. So for now I’m focusing on getting myself where I need to be, supporting the core members when I can through our WhatsApp group, and hoping that at some point the right conditions will arise for the group to thrive in the way I intended it to when first creating the group.
Thanks to everyone who has attended the groups. Your support has been greatly appreciated and I’m so proud of you all for taking the initiative to drive all the way down to Guysborough to join this little group. A big thanks to the Antigonish Women's Resource Centre for all their support and encouragement! Please continue to attend their groups in Antigonish if you can. Also a big thanks to Cary and the Cast Away Cafe crew for allowing us to hold the groups there and their hospitality, ArtWorks East for helping fund our Endo Art Project, Muddy Puddle Goat Farm for inviting us out to play with some goats for the day, and to Shelley Long for coming to do a Soul Collage workshop with us!
And of course thank you to the Guysborough Journal, 101.5 the Hawk, Global News, and all the other news outlets that reached out to learn more about the groups and to help spread awareness about them.
My advocacy work isn’t done, instead I will be a bit more behind the scenes going forward as I find that balance between my health, financial stability, advocacy and community building.
See you later! 👋❤️
Sincerely,
Màiri Cairistìona MacIsaac
Healing with Endo 902
**For those interested in getting involved with a provincial movement for women’s health and wellbeing, please follow WATCH, Women’s Access to Care & Health. It’s an organization in the works that’s been created by a group of women from across Nova Scotia including patients and healthcare professionals working together to address barriers to care. 💜**
