Now, you may feel like you’re helping; you’re just looking out for them and comforting them ... but chances are you’re really just pissing them off. They're already struggling with pain and you may just top everything off. That being said, here is a little list of things to maybe avoid saying (particularly to someone with endometriosis) ...
1. Have you taken your meds?
No, you idiot I’m just sat here in agony for the funnies …. of course they will have had their meds and if they haven’t and they need help getting them they will usually ask you.
2. Have you tried lying in this position?
Yes, we have tried every position and have done extensive research! We haven’t just been to the doctors and hospitals on countless occasions for many hours to then be diagnosed with chronic pain which can be cured with lying in the foetal position.
3. I know how it must feel or I can imagine how it feels, I have bad periods
Unless you have a chronic pain diagnosis, then no you don’t know and by saying this it undermines the pain that we endure. Essentially you are saying you deal fine and we don’t, and even if you think you can imagine it, you can’t.
4. Having children could help
Cool, good to know you think that, but no I am not ready to have children and endometriosis can cause infertility issues so talking to me about it makes me angry and upset. Also, children are not just for fun it’s a lifelong commitment.
5. Are you having a hysterectomy?
No, but it's none of your business if I am or am not. There is little to no evidence this helps endometriosis, so why would you mess up your hormones and get rid of the ability to have children etc for a possibility.
6. Isn’t endometriosis just a bad period?
No, it affects lots of women in very different ways. It's different for everyone; like a fingerprint is unique to the individual.
7. Have you been to the doctors?
Yes, sooo many times!!
8. You’re very young to have endometriosis
Age isn’t actually a factor, it's more recognised in older women as it takes on average 7 years to get diagnosed on the NHS ... and yes that's 7 years of uncertainty and months of pain without an answer. So you could be in pain at 21 and undiagnosed, then finally get diagnosed at 28, therefore you're recognised to have been diagnosed at an older age despite your first symptoms showing at 21, and this is a major problem. The stigma around age means many young women suffer alone and are silenced by other people’s thoughts and opinions on what’s wrong and mentally that is such a struggle. On top of your pain not being believed, this is the worst part.
9. Yesterday you were fine why are you in pain now?
I DON’T KNOW!!! We all have up and down days and different triggers I’m still figuring mine out.
10. Have you had an STI check?
This one hurts the most, you know, I have a diagnosis and an STI check won’t change that.
This is a list of 10 phrases which other women suffering from pain have also said frustrates them, as well as myself. Before you speak, think - it’s good to ask questions and be helpful but please first check whether you are being helpful and not demeaning.
Stay tuned as I will write a post of good things to say and ask. However, if you’re unsure just make sure the person who is suffering knows you'll be there for them when they need them and ask: 'what can I do to help?' - it's really that simple.
Love Ottilie x