Current Research on Endometriosis: An Interview with Britteny Gibson
“One of the things I’ve noticed is that a lot of people aren’t fully aware of all the resources that are available to them, even within the health care system.”
Charlotte Weber: Could you please introduce yourself briefly?
Britteny Gibson: Yes, of course. My name is Britteny Gibson. Many people know me as Britt Gibson. I’m a patient advocate and a passionate campaigner for endometriosis, women’s health, and menstrual well-being across the board. I currently do this quite openly by speaking to different employers about how obviously to demystify and break the stigmas of women’s health within the workplace.
And I’m also the Endometriosis UK’s Glasgow Support Group leader. I’ve volunteered with them for the last three years, and most recently I’ve been working with the Scottish Government and have spoken at the World Endometriosis Congress.
Charlotte Weber: How did you come to work with endometriosis?
Britteny Gibson: It was through my own lived experience that I was first introduced to it. So after several years of struggling to get a diagnosis – like so many others – and nearly half of my life, I finally got diagnosed in February 2020. It was from that point that this revelation, this appreciation that I maybe can give something back and look for ways to make it not as difficult.
Endometriosis itself is a difficult path, but my goal is to make people feel they can be their best-known advocate, to try to bridge that common miscommunication gap between patients and healthcare providers.
Most importantly, provide support for those that don’t have that support system, because endometriosis is so isolating. So those were kind of my main motivators. And today it has obviously led to a much bigger platform than I ever could have imagined and I’m very appreciative of that. I really enjoy building awareness within the community and collaborating on how the healthcare ecosystem can provide better patient outcomes on not only a national and local, but a global level.
About Britteny Gibson
Britteny Gibson is a patient advocate and a passionate campaigner for endometriosis, women’s health, and menstrual well-being. She currently does this by speaking to different employers as well as the Scottish government about how to demystify and break the stigmas of women’s health within the workplace.
Charlotte Weber: What are your ways of doing your work and what platforms do you use?
Britteny Gibson: Peer-to-peer support, for example, is commonly done on Facebook. This is through a private group, so initially there’s that digital online platform to which people can come. The group is set up, as I said, through Endometriosis UK, but the way I’ve set up the group on the platform itself is so that it can be used for different purposes.
For example, we have an area in which people have what’s called learning guides. Endometriosis can be so daunting, when you’re first just coming into it, you’re like: “I’ve just heard this word”. Somebody thinks I may have it, where do I start? You’ve got the person that wants to go in and they want to learn about it and deep dive into it. These learning guides provide a starting point for them to see: “where do I go?”. Because when you Google things, it can be quite overwhelming.
I’ve put these learning guides in place, which are just really a starting point for them, so they can say, “well what is endometriosis?”. Then they can read about it and see what others are saying about it and their experience, so it’s like saying: “actually, I’ve learned this, but I’m not alone”. Someone else talking about their symptoms, having that in collaboration, is a supportive and indirect way in which you can offer support.
Quite often we have people who come in not only looking for the resources, but also to just sit in the back and absorbing all the information. You can come in and say nothing at all. You can literally maybe post once or twice. We have some members that reach out for support quite a lot.
You have three different people when you’re seeking support. You have somebody that craves knowledge very much, like me. The more knowledge I could have, the better. Then you have people who want to learn a little bit. They want to see people’s experiences, but it’s quite scary, so they just want to take it as they want, they drop in and out. Then you have those people who just want to see what everybody else is saying, “I don’t know if I have this, but I just want to stay on the outskirts”.
And that’s totally fine because everybody is in a different part of their journey. The most important part of this digital support group is that it’s a place for everyone, it doesn’t matter whether you are pre-diagnosis or you’re 15, 20 years down the line, have had multiple surgeries, or no surgeries. It’s a place where everyone can come.
I also arrange for different awareness walks or wellness walks within the community because, as highlighted, it’s such an isolating condition for so many. We are told it’s just in your head, so you’re sitting there half the time thinking, is it in my head or is it the pain that patients are quite often told to take some painkillers and get on with it? Having your pain and symptoms validated, is such a comforting thing, and so I do try to offer that as well.
There’s that in-person sense of community as well, because not everybody is going to be able to be online. Some people don’t have Facebook, and some people aren’t on social media at all, so it’s really important to have a balance. And now, post-post-COVID, I think we can say that things are starting to go back to normal. We are able to have a stronger in-person balance. But both in-person and online have their place and their value.
The in-person support usually is a small number of people, sometimes with guest speakers. Sometimes we’ve arranged for nurse specialists to come and talk about how it works within the clinic, because that’s very beneficial for the patient to understand, to better advocate for themselves. We’ve had a medical herbalist come and speak because endometriosis is not a one-stop shop. One form of a hormonal tablet or injection isn’t going to be suitable for everybody.
Some people ask “is there something I can do in collaboration with my prescription that’s maybe more natural”, or maybe they want to try the natural route. What I’ve found is a lot of people were trying to Google things and figure out, can I take this herb with something else? It’s about building that knowledge.
There are things that I never knew, that supplements could counteract with this medication. Often you see previous antidepressants, you’ll know that they are used for nerve pain, but then you can’t have things like grapefruit on them because it can counteract the drug.
All in all, I try to really offer a wide variety of things with the core purpose of building that sense of community, which I feel is so important, but also trying to provide people with tools so they can best advocate for themselves. That doesn’t just extend to the person with endometriosis, but also helping them find the tools maybe, or the ways in which they can pass it off to their support network or their employer.
Charlotte Weber: Yes, you have. It’s great that you have some different means to reach people. With endometriosis it’s so important to reach people through different means, because everyone is different and you have so many treatment options for therapy. Letting people know that there are these options is important because nothing works for everyone, like you said.
But if you know there might be other options, it is maybe okay that some work for others but not for me. That’s there and if there’s something you want to pursue, then you know there is a way to do it.
Britteny Gibson: Yes, absolutely, it is exactly what you said and I think a prime example of that is my work. One of the things I’ve noticed is that a lot of people aren’t fully aware of all the resources that are available to them, even within the health care system. For example, I didn’t know about pain clinics had I not gone to a specialist clinic where my specialized nurse told me about it.
When my condition branched off into chronic pain, she said it would be worth looking into that, and that she’d refer me. Then I looked into it for myself and realized, the pain clinic has a lot of resources, it’s got a psychologist, peer-to-peer support, it’s got pain specialists, so that you have a consultant that purely focuses on your pain. Often that’s helpful for maybe prescribing pain medication in combination with others that maybe a GP hasn’t thought about.
And do you know what, I wonder how many people know about this? That’s where I’ve put in, for example, one of those guides that speak about it both openly and outside the private group, because it’s something that everybody could use and maybe self-refer themselves. I don’t know how it is with you, but here at least within Scotland or the greater Glasgow and Clyde, you can self-refer to these pain clinics.
You can say if you’ve had chronic pain for three months or more and put yourself forward. That’s a valuable thing because people are waiting so long right now to receive treatment.
Knowing things like that and being like, I could use those resources right now while I’m waiting, makes patients feel empowered. Often you feel so helpless. I know, I’ve felt helpless at times, but I can’t speak for everybody. You feel as if your health is out of your control because endometriosis is very complex and has a mind of its own.
Sometimes we’re learning to understand and grasp. Different platforms and knowing the resources that you have, allows you to choose and be the person who makes those decisions and prepares. That’s a very valuable thing for the patient, both from a treatment pathway and mental health perspective.
Charlotte Weber: Are you mainly working on your own or do you have a team or people that you work with a lot?
Britteny Gibson: Within my peer-to-peer support, I do have other support group leaders across Scotland that I collaborate with. And quite often we will work together to build a stronger network within Scotland for the patients in that regard. Then I would say as far as the other work I do, speaking at a corporate level, so going into workplaces and things like that, that’s just with myself.
Through building those connections within the workplace. I do that at the university level, so a lot of it is by myself. Collectively, we’re all trying to work towards the same thing, so a lot of what I do on my own plays well into the parts of the work that others are doing. I also work closely with the Scottish government, but not in the traditional way, as in going into an office and having my core team of colleagues. It’s a bit more diverse.
Charlotte Weber: Do you have any specific goals for the future or projects or anything that you’re working towards?
Britteny Gibson: Yes, so a couple of the things that I’m working on have been slowed down by Covid, but I’m trying to build up the education for GPs in primary care within Glasgow for endometriosis. This has been with the Scottish Government and with work that I’ve done with local GPs. It first started with my own GP surgery, where I spoke to them and said, it’d be beneficial for you guys to know if it is more training you need, or more resources?
Because it’s a two-part thing. You can have somebody that really wants to provide and understand that care, but who is very overworked right now. Resources are very limited, so it’s a difficult one, but if you look at it from an ideal world, where you weren’t as run out of time and it wasn’t just one person trying to do multiple people’s jobs.
Primarily, healthcare professionals and providers aren’t making that link, from my own experience. When I started looking for the diagnosis, I was quite young. They just put it: “you’re stressed with university” or “it’s your mental health, you need to just improve your mental health”. It wasn’t really looked at it like “this patient is presenting with X, Y, and Z. They’ve come in multiple times, maybe we should look for something else”. Fair enough at first, because as I understand it, you’ve got to look at these initial aspects to say, let’s try this and see where to go.
But going back to your question, I really want to build that link or bridge, so that there is that option to see what resources need to be put in place. Is it a matter of having a training guide with which they can do self-learning? Is it something that’s online? Is it something that builds up where they can go and access it in their own time?
So what types of things would be useful. It starts with trying it with a couple of GPs or a couple of surgeons and then seeing how it goes. It’s not a fast process, but it’s something that I keep trying to work towards and build up.
Another part of the project is building up menstrual well-being. That’s going on just now in a lot of schools across Scotland. Many different patient advocates and campaigners are working towards it, because many of us that are advocating didn’t know anything about menstrual well-being and schools. It wasn’t spoken about at that time. It’s really breaking the stigma around menstrual well-being and women’s health.
I’d say the other project that I’ve touched on before is going and speaking and sharing my lived experience within different corporate environments. Most recently I spoke at Morgan Stanley [Editor’s Note: an investment bank] and it was great because Morgan Stanley is a massive company that traditionally is thought of to be more male dominated.
There’s that thought that speaking about women’s health within a male-dominated work environment can be quite daunting. It can be quite stigmatizing, so one of the directors there had reached out and I’ve been collaborating with them. They now have set up their demystifying coffee mornings. It’s great because they’re not just about endometriosis but also about women’s health in general.
What accommodations could they put in place to support people who have their menopause, or endometriosis, or adenomyosis. Then, how do people start speaking to their employer? I’ve seen both ends of the spectrum and I’m very lucky about my own nine-to-five job. A lot of my advocacy work and the work I do for endometriosis is alongside that, and I’ve got a very understanding employer.
This also applies to universities or colleges because when you’re studying, and you’re taking time off like myself, you don’t know but what is going on, but you’ve got that fear. What if I’m in pain or I have my doctor’s appointments? What if have surgery? Are my lectures going to understand?
That type of thing is definitely something that, no matter what journey you’re in your life, whether you’re going to college or whether it’s work, it feeds into something, doesn’t it? Having that power through knowledge and knowing that you can do these things and ask for them and feel supported is essential.
It makes a massive difference to your health how you excel within your workplace. Going into different places and sharing is key to making employers stop and think: are they providing the best accommodations? Are they supporting the people in the best way they need? Are they doing enough so it’s not scary to go and speak to them?
A lot of people from stories I’ve heard have thoughts like: are they going to fire me if I have a doctor’s appointments now? Or if I need a lot of doctor’s appointments? Most likely not, but you have this fear inside your head and you worry about your work, because that’s your livelihood. That’s something quite important to me, because so many people within the group that I support do come to that: How can I best speak to my employer?
I covered that in my talk at the World Endometriosis Congress and discussed the role of the nurse specialist. I was discussing how in this case it’d be like a fact, because you can’t say anything that’s not true. It needs to be very fact-based and understandable, so let’s work with the system. If a nurse specialist can provide a statement of fact to say, this is what you’re struggling with.
It is suggested to the patient that they take it to their employer if they’re being difficult and for example say “I don’t think it’s as bad”. Maybe they don’t say that directly, but that’s how you feel you’re being treated. You can then say “well look, I was at my clinic appointment, here’s this statement of fact from my consultant or nurse specialist, I struggle with daily pain. It impacts my ability to think effectively when I’m in a lot of pain. That’s why asked to take off work at short notice.”
It gives the patient a bit more power, and that relates back to training. Looking at how healthcare professionals at the primary level can have better training to support, so they can start doing things like this while patients are going through the diagnosis process.
I would say all those projects are all very cohesive together. But there’s just not enough time in the day, honestly.
Charlotte Weber: Did you ever come across digital self-help, like an app or something else, in the UK?
Britteny Gibson: Yes, there’s quite a wide variety at the moment, but the challenge is that some of them are only for iPhone or only for Android. That seems to be the biggest factor of stopping people from picking it up. They are really excited, and then they can’t get it because it’s just for one type of phone. It can be a great app, but they’re not able to access it, so accessibility is key, obviously.
Personally, I’m more of a pen-to-paper person. I would track my symptoms in a pain management journal and don’t really use an app. Another patient advocate, Megan Rainer who works with the Exppect Clinic in Edinburgh [Editor’s Note: an endometriosis centre in Edinburgh] created a pain management journal called Symjo.
It’s specifically designed for chronic illnesses and endometriosis. I really like that because more often than not I’m going to remember off the top of my head, so I just grab my pain journal and write it down which also lets me reflect on my progress or journey so far.
Charlotte Weber: Thank you very much for taking the time today.
- Current Research on Endometriosis: An Interview with Prof. Grant Montgomery - 9. February 2024
- Current Research on Endometriosis: An Interview with Dr. Jodie Avery - 8. February 2024
- Current Research on Endometriosis: An Interview with Britteny Gibson - 8. February 2024