Wondering how many women with endometriosis live alone & are even more challenged because of such? How do you live a quality life with endo inflammation that's worth living, especially if don't have reliable in-person support or help in your own home? No friends, family, or partner? How do you heal from social stigma your endometriosis caused?
I have been living alone since my divorce about 4 years ago and I haven't made friends outside of work. I already suffered from major depression, so the pain and fatigue from Endo, has really caused me great distress. I have family members who live near me, however, they all have kids and activities, so I'm not comfortable asking them for help. I've had to miss several family events because of the Endo pain and I don't think they believed that something was really wrong. I went to my aunt's house last month and a stranger told me, "she's the one that doesn't visit, even though she's just 10 minutes away." Jerk!!! I explained that I have been sick but at that point, I didn't have a name for what was happening. They all noticed the 50 pound weight gain and they just assumed, I fell off the healthy eating band wagon again.
I'm an introvert, so I don't like socializing often but with all of this going on, I really feel isolated especially since no one can see the pain that I'm feeling. I had a friend for over 25 years, about 2 years ago when this got really bad, she had some health issues too. I tried to be caring and supportive but I was working full-time, taking 2 graduate classes, more depressed, in extreme pain and up 50 pounds. She dumped me and unfriended me on Facebook, I'm not really sure why but she never once asked how I was feeling. I'm still hurt and angry about that one. I will say that most of the people I work with have been great, one person made rude comments about my weight. So I had started talking more about my symptoms and why I was missing so much work. Then one person told me she had the same symptoms and she had Endo, cysts, fibroids and IBS.
I eventually got tired of my doctor not listening to me and asked my friend about her doctor. I saw her doctor last month and now I'm scheduled for a hysterectomy on Monday. She has only known me for a year but is picking me up and taking me to the hospital, staying until I'm out of surgery and she's going to check on my dog. I feel blessed to have someone like her in my life because dealing with this alone is overwhelming. It's easy to get discouraged but I will say to keep fighting and find a doctor that will listen to you. Most people aren't going to understand what you experiencing unless they have been through it. We are always here for you.
I lived alone last year for 6 months and although my family was in the same city, felt quite isolated. I focused on work and school to fill that social need. I find taking NSAIDS may reduce endometriosis inflammation and a low inflammatory diet. Making healthy meals for yourself is a wonderful way to actively help your endometriosis and your entire body feel better. Even with eating healthy, working and going to school, it wasn't enough...
So, I reached out online to Nancys nook and other online Endometriosis support groups which eventually led me here. I tried to find local meet ups and other woman in my town with Endometriosis I could speak to. I did not end up meeting in person with any of these people. I did however find the very thing I was searching for, and other woman were too. That sense of social connection and understanding. Other woman with endometriosis know this struggle all too well even with supportive families. I've met woman from all over the world through the internet who have Endometriosis and have become fairly good friends with a few.
I will never meet 99% of the woman I talk to online, yet it gives me an incredible sense of community and understanding. To know we aren't alone in this struggle and we can overcome the incredible pain and stigma associated with Endometriosis. Who better to help heal the wounds of social stigma then a collective group of woman coming together with a disorder to find research and educate themselves and others to overcome.
I also also reached out to several OBGYN for expert laparoscopic excision surgery and fought to get this quality treatment. I got it!
The psychological burden Endometriosis pain takes can be heartbreaking. Add in the psychological toll of a very stigmatized disorder and you have the perfect storm for depression. It will beg at you to play all too often and perhaps only you can pull yourself away from the sirens songs deadly voices and out back to sea before you crash.
There are times I think I cannot possibly ever feel happy and content again, my brain so sure this is the sad state which will prevail throughout my life. Then, someone online sends me a silly meme or picture and I laugh. I go out and walk nature paths and draw and take photographs of wildlife and decide to push down my deepest fears and anxieties for another day.
And when that day comes that pain overwhelms me and suffering prevails, it's all I can do to even look on my computer, hoping that others have reached out as I want them to. Hoping for that silly meme or picture to take away my pain for only a few moments. Hoping for those social bonds to heal and help me overcome even when all hope seems lost.
Thank you Sarah & Minyonp for commenting. Bless your hearts & souls. Your responses gave me perspective & are very useful.
Minyonp, I also suffer with Major Depressive Disorder, as well trauma from domestic violence. I have an aunt, uncle, & cousins in my area, but we don't speak with each other unless I am contacting my uncle to pick up my daughter to visit. They have custody of both my kids. Lotta water under the bridge.
Since my parents passed, they've changed something awful. And I've been changing too, realizing life isn't what I thought it was when mom & dad were alive. I'm better off without my relations judgements & spite against me for just being different. They don't understand nor have compassion for my conditions. My aunt told me to shoot myself on the anniversary of my father's death, and since then I've disowned them.
It's taken me a while to get used to being isolated & sometimes I don't want to accept it because it just seems so godawfully wrong. Its hard for me to make & keep friends, but I keep trying. I'm introvert as well. And only child, so I've always been more so in my own head. I was just diagnosed with endo this year, but had symptoms for past 10 years. Currently I have a hernia from the laparoscopy. I just keep on, however I can manage traveling through it all & hope it changes for better soon.
I'm fine with not being a mom to a human child, there is no reason to save my uterus. This doctor is about the 7th one that I've seen and she is the only one that took my pain and symptoms seriously. I've been at peace with this decision since that 1st appointment. Even if I still have issues after the surgery , at least I know my uterus will not be able to attack me anymore.
Until recently, I was alone and in another country. I was able to use the time to find my higher purpose. I found that i should write a book. Somethings i have gone through in life have shown me that i am strong. Among other things, moving to another country because it is what i needed even with health issues was amazing for me. So i started writing a book about my life. It has helped me in so many ways. I miss my family, i miss the support system i had in my home country. Some days are rough and i want to run back home. What keeps me fighting is my self love. It's an amazing feeling being able to go through the things i go through on my own. I have a new strength and power. Since i am in a country where i am new to the language it makes therapy hard to find in person. My writing and now this site have been life savers for me. Sending some love. I know how it feels being alone. You are strong.