This week we're going to talk about support groups. Why they're important? Should you have one? And what to look for in a support group. I'm also going to introduce you to two admins that I've had the pleasure of speaking with about their Facebook support groups.
Do you need a support group?
When you're first diagnosed with LS, we run through a gamut of emotions. Whether they’re shock at the fact that you have an incurable disease.
Disbelief that this is even happening to you, “Like for real.” Sometimes you've gone years and now you're going to tell me that I can't even get rid of this.
Frustration. That you've gone so long and you're here now with hardly any answers. You go through anger. Why, why did you have to get this ugly illness. Why didn't your doctors catch it earlier?
You could even start blaming yourself, looking for answers. What did I do? Was it my fault? What could I have done to prevent this?
All of these different emotions are valid and we go through them. So it's super important that we find someone to talk to as soon as possible.
In my case, I took two years to find you. And in that time, I struggled by myself unknowingly. One of the things about emotional and mental health is a lot of the times you don't even know that you're suffering because you're just living. And unless somebody is looking at you and seeing a change and saying, “You know, you might want to pay attention.” You're not gonna see it.
It's like watching your kids grow, you don't notice how big they get every day. But, that relative who only sees them once or twice a year, they're going to notice these big changes. And it's the same thing with your emotional and your mental health.
Why support groups are important?
And for me, that's where support groups come in. Whether they be online or in-person, you have somebody who's going through similar experiences as you and they can kind of hold that mirror up.
As you see what they're going through, you can start asking yourself questions like, “Hmm. Do I feel like that? Am I going through that? Do I see me in this person? Or you can describe your experiences and one of your support members can say, “I noticed that you're sad. You're lashing out. You're angry.” And bring some of these emotions to your forefront. So that you can address them and they don't cause havoc in your relationships in your life.
Cause that's the real issue with emotional and mental health. When you start changing the way you behave around the people that you love, it's going to change your relationships. Whether you like it or not. There's going to be up, blowback.
So you got to catch these emotional issues as soon as possible so that you can mitigate those changes and start repairing them.
For me, that's where finding your community, that support group, that's going to hold that mirror up for you is so, so important.
Finding the right support group for you
Finding the right type of support group is also going to be equally important. Because you have to be comfortable with this group of people. You have to be able to share openly what you're experiencing and be able to take in the feedback.
So, you want to think about a couple of things before you join a support group. What exactly is it that you want to get out of it? Are you looking just for knowledge? Maybe you want to talk to people about their experiences so you can find new ways to care for yourself. Are you looking for the emotional support? Are you trying to make friends? Are you trying to find a group of people that you can come to with your problems and you feel heard?
You want to find a group where you feel safe in sharing. That you're not going to be bullied or made feel like if you don't follow what they're doing then you're not part of the group.
All of these things are important. And if your group doesn't align with what you're looking for then you run the risk of falling further into that mental and emotional anguish.
You want to think about, do you want to be in a big group with lots of people or would you prefer a smaller, more intimate group? With the full understanding that with a big group when you ask questions, there's a greater chance that you're going to have more diverse answers. In a smaller group, you're going to probably get the same answers from the same people so you can start developing that closer bond and relationship.
You also want to find groups that coincide with your belief system. If you follow the science and you want to be in a group that goes with the research and promotes that kind of environment, you don't want to be in a group that's all about home remedies because those have not been tested and the science is not there. And vice versa, if you are all about taking care of your body naturally, and you don't want to use medical medications, then you don't want to be in a group where that's the focus. You want to find where your people are so that you can grow and feel supported.
Research the groups before you join
One of the good things about Facebook is they do allow their groups to have descriptions. So make sure you look at the description, read it, see what the group is about, how many people are in there, how active it is. All of these things should factor into is this group right for you?
And if you think you, you know what, it might be a good fit. Go in. See the environment and if it's not right for you, leave and go to another group. Because the worst thing that you can do is stay in a group where you don't feel supported, where it's not the right match for you and you're going to further put yourself in an emotional hole.
You may not like social media. So maybe Facebook groups are not for you. There are groups that are outside of Facebook, they're fewer and far between and a lot of them you're going to have to pay because they're not on a free social media. But they are out there. And if that's the type of group that you need then, definitely go out and get it. Because we all need that support.
Facebook Support Groups
I reached out to a bunch of Facebook group admins, so they could talk about their groups and what they thought about Facebook.
Today, we're going to talk about two of these special Facebook groups.
Lichen Sclerosus Sclerosis U K Support Group For Women
The first is called the Lichen Sclerosus Sclerosis UK Support Group For Women. And I've talked about one of the admins multiple times on this podcast. And she is the ever courageous Clair Baumhauer. If you haven't heard me talk about her go back to, I think it was the second episode or the third, my diagnosis story. And I actually give Claire story before mine.
She runs the group with Emma Norman and Carly Weiss. These ladies are on fire. Now, not only do they run this group. They have multiple groups. They have multiple social media accounts that raise awareness on Twitter, Instagram, Facebook. They are everywhere.
I'm going to have all of their social media account information in the show notes. So definitely be sure to go and follow them. They are constantly putting out information on Vular Cancer, on Lichen Sclerosus, and everything that you should know about both of these diseases.
These women are passionate. They've even recently paired up with, Eve Appeal on their “Get Lippy” campaign to spread awareness about different genital cancers. On top of all that, they have a website chock full of information. Right on their front page, they have a list of eight different support groups for you to choose from, everything from women, men, parents. You can't go wrong. I'll have all of their links in the show notes.
But let's talk about this Facebook group. It's about four years old. The last time I checked, they had 3,546 members. So it's a pretty decent size group. Their description reads, “Lichen sclerosus UK Support Group was set up to help and support patients in the UK and enable them to share treatments, procedures, and doctors as names and terminology differ worldwide.
This is not a UK exclusive group. We have overseas members also, as some people find their treatments are more similar to those in the UK.”
They let you know when requesting access to answer the questions and that'll enable them to accept your request faster.
Now, not only do they have a Lichen Sclerosus Support Group, but they have a Vulvar Cancer UK Support Group as well. I'm going to let Clair introduce the Vulvar Cancer support group.
“I started the vulvar cancer support group back in 2016 after I was diagnosed with cancer. I hadn't heard of the cancer before. And it's a very lonely place where you don't know anybody else that's going through the same things as you. I also hadn't heard of Lichen Sclerosus and our search groups on Facebook to find someone else to talk to and find out a bit more. Because no one had heard of it. I had no one to talk to. It's quite a lonely place.
Having support groups makes it a lot easier to talk to other people. What I like about the groups being on Facebook is that you get instant help and advice. As soon as you put a comment upon a group within minutes, you can get somebody that knows what you're going through or can help with advice, someone to talk to.
Face to face with conditions like this can be embarrassing, which is why I think a lot of people do support groups on Facebook. You’re behind the profile picture. No one knows really who you are. You can talk more frankly, about what you're going through.
Also as an admin on the group, a lot of the members do sometimes message us and just talk to us one to one. Just to ask us questions or our experiences. Especially as I've gone through cancer, a lot of those in LS support groups want to know a bit more. What it's like? How you know I had it. What you go through?
So, that is why Facebook, is such a good thing to have. Any other way, sometimes you might have to wait days or weeks to get any answers from emails or from your doctors. And those that are already going through it can help us out quite a lot.”
I completely agree. The emotional support you get from a group of your peers that are going through the same thing that you're going through is so valuable for keeping you out of those dark places sometimes, that it's priceless. And being an admin in one group is a hard enough job, but being an admin in multiple groups and raising awareness on multiple platforms all at the same time that you're dealing with this disease and vulvar cancer. She's a hero. Absolute hero. So definitely go and support these ladies.
If you're looking for a large group that's very science-based, this is the group for you. Clair and Emma are constantly in touch with BAD, the British Association of Dermatologists so that their information is current and correct.
Once again, go out and support them.
Lichen Sclerosus New International Women's Support Group
If you're looking for a small intimate, medically sound group, you're going to love this next group. This group also has three admins who've gone through the Lichen Sclerosus cycle of misdiagnosis. And through their journeys, they found the passion to give back and help other women.
They are Petra Carlton Kelly, Merriam Craner, and Ann Wright. Their group is called the Lichen Sclerosus New International Women's Support Group. Their group just passed 500 members this past week. Congratulations ladies, because I know that is major! Last time I checked, they had 515 members. So it's a nice small number where you're not going to get lost, but you're also going to have a lot of diverse answers and experiences to any questions that you post.
Their members highlight their extensive file section, the 24-hour coverage, and the advice and care from their admins. And I can tell you from personal experience talking to Miriam multiple times, she is a mama bear. And I'm sure if you're in her group, you're one of her cubs and she is going to take care of you like a mama bear. So you will be in good hands.
The description for their Facebook group reads, “We welcome women from all over the world who are suffering with the condition or who have young children with Lichen Sclerosus. The Lichen Sclerosus New International Women's Support Group is a new group started by women like you who've been diagnosed with LS. Who are very familiar with and are very experienced in the condition.
We're women who have all been involved in the administration of LS support groups, however, we are not medical professionals. So nothing you read in the group is intended to replace advice from a licensed medical professional.
We believe that like sunflowers when things are at their worst and darkest by turning toward each other and leaning on each other, we share our energy and strength. We support and carry each other until we are strong and confident enough to deal with the condition on our own.
In addition to growing our list of international practitioners, we use evidence-based information and links to resources in our files, which will help you find your way around this condition.
The admins are based in the UK and the US. You shouldn't have to wait long for a response as someone is always on hand. You'll find great support from fellow members and are free to browse our files at any time.
Please be kind to one another LS is a highly stressful and individual condition. You never know what the other person is contending with.”
I love that. I love that they put about caring for one another in their description because it's so, so important.
So I'm going to let Anne do the honors of introducing the group and giving you a little bit more detail. And telling us what she thinks Facebook can do better to help the LS community.
“Hi. My name is Ann Wright and I suffer with LS. I together with Miriam Craner, and Petra Carton-Kelly set up the Lichen Sclerosus New International Women's Support Group on Facebook in 2019 after several years of administrating in LS support groups and many years of dealing with the condition ourselves.
Between us, we have registered nursing, teaching, people management and communication qualifications each to degree level. The best way in which we support women is by providing responsive 24-hour access from the UK and the US to our members. Together with free access to our extensive library offering articles, personal experiences, and clinical evidence-based and researched information to all women with LS, whether newly diagnosed or long-suffering.
This includes details about symptoms, complications, treatments, and a list of international qualified practitioners who specialize in LS and vulval conditions. We offer shared experiences and tips about how best to manage and live with the longterm consequences of this condition.
There are a number of things that we would like to see via Facebook in order to offer better support for LS suffers. Most significantly, this would be to stop widespread, dangerous, negligent, or ineffective practices from being touted, which exploit desperate and suffering people. Preventing them from obtaining appropriate and effective treatment.
Facebook could help by allowing the promotion of diagrams and photos within closed specialized groups that educate and inform women about female genital anatomy together with correct terminology without censoring and removing them indiscriminately.
We would like to see people such as the so-called Medical Medium, vetted and stopped from promoting unvalidated and unfounded practices, which give people false hope and obstructs them from seeking timely help for their condition.
He advocates, drinking, celery juice, claiming that it treats and cures LS. There is no cure for LS to date, only treatments.
We would like to see Facebook preventing the promotion of harmful and unproven products, such as borax and colloidal silver as treatments for LS that are being either ingested, inserted, or used to soak the anal genital areas with. Manufacturers such as the 20 Mule Team Borax and recognized validated dermatological institutions, categorically state, that borax should not be used as treatment for skin conditions and can have harmful effects.
Topical steroids are the only effective treatment for LS at this time. They reduce inflammation, promote healing, and help reduce the risk of squamous cell carcinoma of the vulva from developing as a result of the repetitive injury that inflammation tearing and scratching causes. Despite this, there is much misinformation and demonization about this form of treatment.
Facebook could go a long way towards preventing this false information and promoting the facts about this safe method of treatment. Many medical practitioners are failing LS suffers through misdiagnosis and lack of education about the condition which can in turn lead to years of needless suffering, disfiguring surgery, and even death.
If there is a way that Facebook can promote education amongst professionals, we believe that this should be a primary focus. Thank you for your time and consideration.”
Thank you, Anne. That was very well said. Listen, I know when we get diagnosed and we're told there is no cure we can get desperate. But don't let that desperation possibly cost you your life.
I'm all about the science. And I only bring you things that I've researched. And from my research, Anne is a hundred percent correct. The only thing that has been proven to stop the development of Vulvar Cancer are the topical medical treatments. Will some of these other things stop your symptoms? Yeah, they may very well do. But that doesn't mean that they will stop the development of cancer cells.
So be sure to do your research before you abandon your topical steroids. If you have any questions, please reach out. I will share all of my resources with you. And get you in touch with people who can answer your questions if I can't.
Go ahead and join either one of these groups, ask your questions, share your experiences, and don't try to go it alone. Get the support that you need so you can stay healthy and enjoy life.
So there you have it for today. Two amazing groups that will help you too handle the curves and the hurdles that come with Lichen Sclerosus. I'll have all of their information in the show notes. Go ahead and apply and let them know that you heard about them on the podcast.
While you're on Facebook, don't forget to go and like, and follow our new Facebook page @lichensclerosussupportnetwork. So you can get all the information that I put out as well.
I can't wait for you to come back next week because we're going to be talking to an LS sister from Australia. So make sure you subscribe to get notified as soon as that episode drops.
And I hope you have an amazing week. I will talk to you next time. Bye.
This week we dive into support groups. Why you may need one? Why they are important and what to look for in the right support group for you?
I'll also introduce you to two Facebook support group admins and let them tell you a bit about their groups.
Links for groups as follows:
Lichen Sclerosus Sclerosis U K Support Group For Women
Website – https://lsvcukawareness.weebly.com/
Lichen Sclerosus New International Women's Support Group
Lichen Sclerosus Support Network