Trigger warning for suicide.
In previous posts I’ve touched on how important support has been to me. I do not know how I would have coped without my mum and my husband in particular. I would be a lot poorer, lonelier, and much less mentally healthy, that’s for sure. I think it’s also unlikely that I would ever have got myself together sufficiently to have had my second surgery. Maybe not even my first.
In this post I really want to break down why support is important. I’ll be using the general term “support group” and “support network”, and that can cover really anything from other people with endo, to friends and family or a trusted treating team. In my next post I’ll write more about types of support groups and how to find them or create them.
Support is important because…
1) It is validating
Support networks are vitally important for people with endometriosis. I’ve already discussed how even the medical profession, who are supposed to be the ones that sick people can trust and rely on, repeatedly let us down. If you are alone and faced with that kind of dismissal, it is incredibly hard to believe yourself and keep pursuing a diagnosis and treatment. Having a support group reminds you that your pain is real and you deserve real treatment. I went to hospital recently and was told my the emergency doctor that there was just no way that my back pain was related to my endo. Unsurprisingly, it totally was (later confirmed by my surgeon), and everyone in my local support group said, yep, I get that, it’s an endo thing. It’s a big confidence-booster.
2) It reminds you that you aren’t alone
This very much ties into the first point. I cannot describe how empowering it is, after thinking you must be the only weirdo in the world suffering these symptoms, to find other people who say, “No, you’re not mad and you aren’t the only one. I suffer this too.” It’s not that you are delighting in the fact that someone else is in pain, it’s that it confirms that it isn’t all in your head, and gives you someone to commiserate with about the ups and downs of the endo journey.
3) It gives you social interaction
This may sound super basic, but it is really important. Because of the way it prevents us from engaging in normal social activities, and often from just leaving the house, endometriosis is an inherently isolating disease. Loneliness can be devastating even to someone who is mentally and physically well. Add in constant pain and the emotional burdens that come with endo, and loneliness may literally be a killer. At best, it can leave you flat and unmotivated. I know that being by myself on really bad days, even knowing that my husband would be home in 8 hours, left me a total mess. I wouldn’t brush my hair or my teeth, I would just lie on the sofa and alternate between staring into the distance and thinking miserable thoughts, and crying myself silly. Sometimes interacting with other people required more effort than I thought I could give, but every time it pulled me out of that mindset, at least for a while.
4) It educates you
I can honestly say that I have learned more useful things about endometriosis from other people with it than I have from any doctor. I’m not suggesting skipping the doctor by any means, but there are so many things you can learn from fellow endo-havers. For example, which doctors in your area and rude and which are compassionate? Where can you find the cheapest TENS machine? Which hospital has a better emergency department routine for really bad flare-ups? Should you go to the doctor if X, Y or Z is happening, or is it normal?
5) They can advocate for you
I discussed here how I seem to get better results out of hospitals when my husband is with me. It is so hard to be strong and argue for yourself when you are in screaming agony, so having someone with you at the hospital, at the doctor, or even just in public, who understands you and can state your case or make your excuses and get you a quick exit, is so helpful. They can also recommend other supports for you and hook you up with specialists you may need to see, such as pelvic physios.
6) They can help you
If your supports are in person, they may be such wonderful human beings as to be willing to drive you somewhere when you can’t make it, help you tidy up your kitchen when it’s a week deep in takeaway containers, or walk your dog for you because you can’t do it, but also can’t stretch to a professional. Or, they can just come and spend time with you. That’s helpful too.
7) They can lift you out of darkness
This is a big one, and separate from the loneliness issue I mentioned above. You can still be really gloomy when surrounded by people, because this is a pretty-gloom inducing disease. People who know and love you, however, know how to punch through that crusty shell of unhappiness and get you in a good mood again, however temporarily. They know the things that make you laugh, and they’ll say or do them. They also bring you ice-cream.
8) They give you a place to vent
Most doctors don’t want to hear us bang on about the failings of the medical system. Having a network of people you trust lets you have a vent. It’s not necessarily an attempt to solve or change anything – sometimes you just need to get those feelings out and be heard. A support group lets you do that.
9) They help you understand yourself better
One thing that my support group of other endo people has done really well is to help me understand how lucky I am. I know that sounds weird and I’m not suggesting that my condition isn’t bad or that my pain is trivial. However, I look around at women who have already had total hysterectomies and are still in so much pain that a good day is one where they can stand up and walk a few metres, and I realise how lucky I am that my good and bad days are so very different. It has also helped me be stronger, because I am inspired by the people who are even stronger, more hopeful and more positive than me under far worse conditions.
10) They let you help other people
One thing that it is super hard to do when you have endometriosis is to help other people. It’s hard to give to charity when your available income is going straight to your GP and chemist. You can’t help your friends move house if you are in the middle of a flare-up. However, by joining and being active in a support group you can help educate and assist those who have just been diagnosed and are looking for help and advice to start their journey, just as you once were. It’s a rewarding way of giving back, and each person joining and contributing hopefully makes things that much easier for the next.
Please stay tuned for my next post about the types of support groups you can have and how they can help.
Do you have a support group that you just couldn’t do without? How did you find them, and how have they helped you? Let me know in the comments below!