Not only is endometriosis confusing for medical experts and sufferers alike, but the challenge is tenfold that for friends and family of sufferers. Seeing a loved one in pain or exhausted without really being able to help or without properly understanding can be difficult, but we are all in this together and can help each other.
The biggest thing about endometriosis is you can't see that anything is wrong. I once went to work and was having a day where I was on the brink of exhaustion. Not tiredness, but the kind of exhaustion that endometriosis forces on you with no prior warning. I had slept well, I had eaten properly and I hadn't gone out, yet I felt like I was walking through treacle to get to work and my mind was desperately trying to keep itself awake and functioning, like propping eyelids open with matchsticks. Yet, when I got to work and told a colleague how I felt, she said 'you look fine'. After that I went to look in the mirror and, to my dismay, I did look fine. I looked alert and alive, completely normal. Throughout the day and since that day, the words 'you look fine' kept re-playing themselves in my mind, reappearing to remind me that, even if I was feeling terrible, I looked fine so there can't really be anything wrong. I felt annoyed that I had no physical way to show that I was having an endo day. It's not like we can walk around with flashcards which say 'endo day' or 'I have stabbing pains in my right side' or 'the pain is so bad I might faint'.
That is the difficulty with endometriosis. On top of being hard to understand and deal with, it is almost a silent disease as the sufferer can look perfectly healthy but in fact may have crippling pain.
Being mindful around sufferers is key. We shouldn't need a sign to tell people that we are having a bad day; nor do we want people to think we are overreacting at something that may seem just to be a nuisance or slight discomfort. I'm constantly fatigued and I constantly have huge spots underneath the skin on my face which leave me with nasty scars, even though I don't pick or squeeze them. I am conscious about my bare face because of my endo spot scars, and I wish I could be like other girls in their 20s who can walk around without makeup, not having to hide huge spots on their chin. My family are all so supportive and encourage me to look at the bigger picture, which has been a huge help. They sympathise with me but they know how far words of encouragement go, so they always help to reassure me and lift my spirits.
If you know a sufferer of endo, lend an ear and ask questions. It's best to try to understand the type of pain. They'll appreciate your interest and it'll help you be mindful about how to approach them on their bad days.
And if all else fails, chocolate always helps. That's something we can all understand.
- A.T.
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