Chronic fatigue, fibromyalgia and endo brain are common symptoms of endometriosis but it isn’t often talked about. Chronic fatigue and brain fog are probably two of my biggest battles with endometriosis, we all forget things from time to time or just not feel as onto it as normal, but for many of us with endometriosis, this happens regularly, if not daily. This is known as “endo brain fog,” and is linked to the chronic fatigue that many of us suffer from. Now chronic fatigue and brain fog are not a typical “persons” tired feeling due to a lack of sleep or a full day of work. Fatigue is a constant state of being tired—not sleepy, but physically exhausted. Though pain can accompany fatigue, or even be a part of the cause it is not always the case. It is also common for people with endometriosis are more likely to have chronic fatigue syndrome and to suffer from fibromyalgia. Fibromyalgia is a disorder characterised by widespread musculoskeletal pain and accompanied by fatigue, sleep, memory and mood issues.
For people with endometriosis, chronic fatigue, fibromyalgia and endo brain can have a feeling constant exhaustion, imagine feeling like you have the worst hangover of all the time, the headaches, head pounding, your body hurts, stabbing feelings throughout your body, you want to eat but you can’t hold anything down, feels like someone is shining a bright light in your face, so you are always squinting your eyes and you feel dizzy, your brain hurts and this is all happening while you are having to “show up” you know going to work, family life meet friends etc. because that is what is expected of you, and then just for fun sometimes our body decides to through in your period and everything that goes with that, and for extra fun, a bit of depression and/or anxiety, sounds great right? Now imagine having that for days on end, pills help a little but don’t fix it.
Now you might think, “whatever” how can anyone go through all of that and still show up to work, do family stuff etc. But the truth is we just do, and honestly, I don’t know how, but some days my son is late for school because I am in so much pain that I can’t walk or I’m vomiting, dizzy, my legs hurt so much. Sometimes I have to order an Uber to take me to drop him off at school then bring me home, and his school is only a 10 min walk away.
Some days we might just have a few of these things going on in our body and others we have all of it. There might be some days we need to rest and take a day off, but the thing with taking a day off, resting and maybe asking for help can make us feel so guilty because endometriosis is what I call an invisible illness. After all, we don’t look “sick” on the outside, how can all that stuff be going on in our body and we still look “normal” and the sad thing is we are often questioned if we are actually sick and often not taken seriously by doctors. family, friends, work, so it is hard to not feel this guilt and I won’t even get started on how all of this can cause/ effect depression and/or anxiety.
“This is the part where I tell you I'm fine, but I'm lying I just don't want you to worry This is the part where I take all my feelings and hide 'em Cause I don't want nobody to hurt me” - Wishing Well Juice Wrld
Now for me my chronic fatigue and endo brain put me through a lot of body pain, dizziness, horrible headaches, tiredness, difficulty concentrating and poor memory. Now I’m not young but I’m not old and I am too young to be forgetting names, words, entire sentences, not being able to hold in information, leaving the house and forgetting where I am going, and I am to too young to not be able to finish off a conversation because I’m failing to string words together, and yes this happens far too often for me. You might ask, well how did you put all of this together? Well, it took me hours and I did it over 5 days. So if you have read this far, thank you.
So here are some things not to say to someone with chronic fatigue, endo brain and endometriosis:
Oh yeah we all get tired
Come on it's just half an hour, you'll be fine
I know how you feel; I get tired at work to
Why not take a nap you will feel way better?
You are so lucky to get time off work/school
If you'd just get some exercise and change your diet you would feel better
This is obviously depression.
You sure you're not just doing this for attention?
You don’t look sick
Suck it up, it can’t be that bad, you were fine yesterday
It can always be worse
Saying nothing at all
Because, honesty It's frustrating and heart-breaking having to constantly justify things to doctors and people around us and this is possibly why a lot of us don’t share what’s going on, and I know that can make it harder to understand us.
So how can you support someone with chronic fatigue and endometriosis?
Learn all you can about the condition - Education is a big deal, there is lots of information online so read up on it, go to appointments with your friend or loved ones and listen and ask questions, ask them about it, what can I do to help you? Educate Yourself.
Be supportive and open – don’t undermine their feelings, acknowledge them, their feelings are valid, they are already feeling like shit don’t make it worse.
“I’m sorry you are going through this, what can I do to help”
Help out – help around the house, make dinner, do the washing, the food shop.
Be flexible – the thing with chronic fatigue, Endo Brain and endometriosis they can come out of nowhere so often we have to cancel plans with short notice, people like us tend to cancel often and it can often be taken from others the wrong way but believe me, we would love to be out with you so please be understanding and don’t stop inviting us out.
Find activity’s you can do together- Instead of going to that run or gym session you had planned, how about a slow walk. In place of a trip to the moves how about a movie at home with blankets and hot water bottles. I understand how these conditions can affect relationships so finding alternative activities you can still do together may just help your relationship grow, well that’s from my experience anyway.
Date nights- these don’t always have to be a “going out night” fill a bathtub with some nice bath salts for your partner and then order some take out jump into bed and watch a movie, have a heat pack and or a hot water bottle on hand for your partner to use for the pain.
So if you have read all of this, thank you, it means a lot to me, and if you take anything away from this, I ask you to take compassion and understanding, because honestly, that is what we need.
Please feel free to leave any comments below or ask any questions.