When I tell people I have endometriosis people are shocked about how common the illness is they feel sad that they’ve never heard about it before. As I start to get to know people more long term the best, and most supportive people around me are the one’s most willing to understand what I go through.
I’m happy to say that I am frequently asked what more someone can do to help me with my illness, but there are still plenty of people who don’t ask, or are afraid to ask, so this update is for the people in your life that could stand how to support you more.
Understand that Endometriosis is incurable
Endometriosis is a complicated illness. We’re not entirely certain what causes it (although there are some theories) so while we’re not certain of the cause, we can’t be certain of the cure. Everyone with endometriosis has to manage their pain and fatigue long term, using a series of coping mechanisms, surgical treatments, hormonal treatments and pain management.
This means that someone that has endometriosis will have numerous treatments throughout their life, and although short term illness requiring surgery will mean permanent improvement in quality of life, people with endometriosis require regular and constant treatment to maintain a good quality of life.
Neither pregnancy nor the menopause are a guarantee for relief either, it very much depends on the individual.
What this means for you:
You may notice that the person you know with endometriosis has surgery every few years or so, you find yourself thinking “why are they having surgery again, aren’t they fixed up from the last time?”. Try to understand that it’s a long-term illness with no definitive solution, the endometriosis in someone’s system can grow back and cause more pain and discomfort, months or years after surgery requiring constant care.
A big part of learning to live with endometriosis is coming to terms with the fact that it may not ever leave you. You need to step up and become part of the support team of your loved one and help them accept their illness. Some people may never accept their illness, but either way it’s about helping them to find out what they can still do despite being ill rather than what they can no longer do.
Appreciate that endometriosis varies and fluctuates
No two days are the same with endometriosis. Sometimes I am well and can achieve a lot, some days I struggle to walk. It’s the random element of this disease that proves to be one of its biggest frustrations. I won’t know how much energy I’ll have for the day until I open my eyes. Sometimes I can accomplish a great deal with no payback for pain, and other days even bending or lifting something once can exhaust me.
Confusingly, many of us with endometriosis never experience any symptoms at all, and only find out something is wrong when we start to have a family. Some only feel pain for a few days a month, some are in pain all the time. It’s an extremely varied illness.
What this means for you:
Try not to be confused or frustrated when someone with endometriosis can manage to do something one day, but fails to do it the next. Understand that body strength, pain tolerance and energy levels go up and down every day and throughout a day depending on how much you try to do. Appreciate that chronic fatigue means that we cannot easily recover energy like you can (by resting, eating, sleeping or drinking coffee).
Let the person you know with endometriosis take the lead on what they can’t and can manage. Over time, and with acceptance of their illness they’ll learn how to ask you for help, and understand their levels of pain. Appreciate that while you’ll want to help with everything initially (as you feel it’s one of the few ways that you can help) that the loss of independence that comes with asking for help is a complicated and emotive issue.
Realise that endometriosis is painfully, painfully common
Endometriosis is as common as diabetes, with 1 in 10 women effected totalling 1.5 million women in the UK alone. Most people haven’t heard of it, and this is because of a historical stigma that surrounds discussing all illnesses. This is made harder by the fact that endometriosis usually involves the female reproductive system and periods. Subjects that most people won’t talk readily, let alone want to know about when they go wrong.
The good news is that the endometriosis community and charities like Endometriosis UK are doing everything they can to raise awareness of this awful disease. Cancer was once talked about in hushed tones, and it’s perfectly possible for us to turn around how this illness is perceived and talked about.
What this means for you:
Don’t be afraid to talk about endometriosis, we need more people to talk about it and help share our story. The more people that talk about it, the less of a stigma that it’ll become. Ask lots of questions, try to find out more about the illness, knowledge and understanding goes a long way.
Be prepared to help
Any long term illness is tiring. A relatively normal day of activity requires a lot of hard work and forward planning on the part of the person that’s suffering. We normally have a limit energy budget for the day/week ahead, and this (like our illness) fluctuates from day to day depending on how much we have to do, how much pain we’re in, and how much energy might be left from the previous day.
Chronic fatigue is one of the frequently overlooked symptoms of endometriosis, but it’s also one of the most common, and among the trickiest to manage with (alongside pain). When you’re pain filled, your stress levels tend to rise, and it becomes harder to think, form sentences, remember things, perform actions or even speak calmly.
What this means for you:
The expert on this illness is in the same room as you. Learn to listen, and listen well. Learn to recognise the tell tale signs of pain in your loved one, and realise when the smile and the strength is a disguise. It’s a skill that they will come to appreciate and rely on dearly. Acknowledge pain and get a sense of whether or not your loved one wants you to do something about it, or just wants to be treated normally that day, because their needs will change day by day.
Give specific offers of help rather than vague offers. It’s hard to formulate what you want when you’re in pain, questions like “would you like a cup of tea?” or “can I carry that for you?” are much more inventive and reliable than “can I give you any help?”. This means we have to think of the help as well as ask for it. The brief moments of reprieve from the pain, and those small gestures of kindness are what keep us going.
Don’t forget the specific things you can do to help
- Read about the list of endometriosis symptoms and understand how what symptoms might be effecting the person you know.
- Research endometriosis online – equip yourself with as much information as possible
- Find out what you can still do together, and make suggestions for replacements for things they can no longer do
- Find some time to have fun together
- Accept there will be setbacks and hard days
- Find some help for yourself, there are sources of support and counselling for friends, family and partners of those suffering with endometriosis
Thank you for reading this far, if you’re supporting someone with endometriosis, you’ve already taken a big step to helping them manage better by taking the time to learn more.