When I was first diagnosed with endometriosis, I had no idea what it even was. I just knew that something inside of me hurt during my period and sex, and that my doctor had said “don’t worry, it’s normal.”
If you have been diagnosed with endometriosis, either in the past or recently, then you know how isolating this experience can be. In a recent poll of women on the Tia app who are managing endometriosis, more than half reported feeling isolated or alone when they were first diagnosed.
The good news is that there is a ton of support out there for women living with chronic disease like endometriosis — if we just know where to look. Here are some suggestions:
Endometriosis is a chronic disease that can feel like a full-time job.
Endometriosis is a chronic disease that can feel like a full-time job. It’s difficult to live with and finding the right support, treatment and doctor can be challenging.
I know because I have lived with endometriosis for 9 years, but I also live it every day as my full-time job. I spent years trying different treatments before finding one that worked for me: hormone therapy combined with exercise and dietary changes (also check out the Holistic Approach To Endometriosis).
My doctor tried many different medications before prescribing me one that didn’t cause side effects or health issues (like depression). Finding the right medication was worth all those years of trial and error—it’s saved my life!
Download our 12-page free endometriosis self-care tracker down below:
Seeking support is one of the best things you can do for your health.
Supporting yourself is critical to managing your pain, but you’re not alone in this. There are many ways to find support for endometriosis and I encourage you to look into them, whether it be with a therapist or through an online community. Seeking out others who have experience with the disease can help you feel less isolated and more connected. It also helps people better understand what you’re going through, which will hopefully lead them to offer more helpful advice when they see you struggling.
The first step is being able to talk about it—and there are many ways you can do this! One of my favorite things about endo is how much we talk about it—in real life (IRL) and online (social media). Some great places where I’ve found support:
- Support groups at local hospitals/nursing facilities
- Online communities like r/endo on Reddit or The Chronic Illness Lifestyle Guide on Instagram
- Blogs written by women who’ve been diagnosed with endometriosis
Living with endometriosis is hard enough — you don’t need to go through it alone.
It can be incredibly difficult to talk about what you’re going through with people who don’t understand. In fact, it’s so hard that many endometriosis patients feel alone in their struggle and isolated from others who are experiencing the same challenges.
However, getting support does not have to be a struggle. There are many different ways for people with endometriosis to find the support they need: online forums and communities, social media groups or communities (like my own!), local support groups like ENDO Warriors meetups in several cities around the world — even just talking with friends and family members who have been there before can make all the difference!
Finding help and community is critical.
Finding help and community is critical. It can help you feel less alone, get through the tough times, and understand the disease better.
This is something I’ve learned in my time living with endometriosis: Nobody knows the pain you experience like you do, but there are people out there who have been through it too. They know what it feels like to be in pain every day and they understand how hard it can be to find answers or even just manage with a chronic illness like this one. You don’t have to go through this alone! If someone told me that when I was first diagnosed I would have been so grateful for their words of support—and probably very confused about how my friends could possibly understand what I was going through (I mean…they don’t).
In my experience, the 3 years since I was diagnosed have been a roller coaster of emotions. Endometriosis can feel like a full-time job, and it’s often hard to see the light at the end of the tunnel. But when you’re surrounded by people who care about you and understand what you’re going through, you suddenly don’t feel so alone. There are plenty of ways to find support for your endometriosis — be it through professional help, online communities, or simply by being there for your friends with chronic illnesses. It may seem scary at first to open up about how this disease is affecting your life — but it can also be one of the most important things you do for your health.