What do I say to people who ask?

Hi ladies,

I want to know what to say to people when they ask why I walk the way I do, and why I do not work everyday, I say I have a health condition it's endometriosis but I do not think they understand it, oh does that mean period pains? Will you have a hysterectomy? Does that mean you wont have children?

If they have read about endometriosis I just think they are misinformed because most doctors don't even have a clue, I have no average endometriosis if there is such an average.

Its more than severe, it affects me daily with varying levels of severe pain, people say is it your back, is it our leg? It feels like its all over my body, I get upper and lower back pains, chest pains, pains in my feet, hands! I sometimes wonder if there is something more serious wrong with me that no one has picked up on, it wouldn't surprise me, doctors are rubbish, well the ones I've met has been!

I just do not think I explain it properly and wonder what I could be saying to try have people understand me better. But I do not have time to explain it and when I think about it all I just become very angry and upset that it has been going on so long and I seem to be worse than ever!

They probably go away thinking endometriosis is a mental illness!

Should I prepare a flyer to pass out i when im asked about it t?!

7 Replies

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  • Dont worry about what people think about you, you know it is not a mental illness and you know how much pain in.

    If you ever need to talk you can always leave me a message.

    I hope you begin to feel a little bit soon.

    Emma-jane

  • i know how you feel - i'm a mobile hairdresser and i've gone from working a 45 - 60 hr week to just 8-12 hrs, i had a very successful business but now i'm just plodding along with a pittance of money coming in - i have found that by reducing my work load and shortening my days per week, and only doing 4-5 hr shifts per day, i seem to be able to manage this, whereas when, and occasionally when i do a full day, i can barely walk come the latter part of the day.

    any customers that i have told i may have endo, they say 'oh yeah, bad periods, yes i get that' and i think to myself 'bad periods, if only' but it has come to the point now where i just say anything, like oh i have a bad back etc etc, or if i have to go sick i usually say my car has broken down - its not because i want sympathy or them to say 'ooh endo, thats really bad' nothing like that, but it always seems they take it as a bit of a throwaway comment and dismiss how evil this condition can be - they look at me and think i look fine, i'm smiling and chatting away, they don't realise that my smile is really a gritting of teeth to hide the stabbing pain that has gripped me, i'm stood behind them they don't see that i'm nearly doubled over.

    sometimes everyday things such as work, housework, shopping etc etc are a real battle to find the energy to do, or in too much pain to do, some days i manage but some days i just simply can't, for which i'm thankful for my wonderful, understanding hubby and two sons xxx

  • When I'm feeling brave I just say I'm poorly, the rest of the time I say that I have an invasive inflammatory disease in my pelvic/internal organs. People take it a lot more seriously this way. It's sad that you have to spell out what this disease is to some people, but after decades of public and medical misinformation it's the sad truth.

    I also walk funny :)

    xx

  • Wow! Those are quite intrusive questions... I'd be tempted to tell people to mind their own business.

    I say it's endometriosis, and if they need an explanation I say that it causes abnormal growths or inflammation on my internal organs. I also explain that it's a long-term condition, and it's hard to tell how things will develop over time.

    I'm sorry that you have to be a spokesperson for endometriosis - you have enough to deal with already. But the more people we educate, the better we'll be understood.

  • if anyone ask me that and i would have said "i have bad gynae probs and bad women probs and it there for life!!!" that my motto.... i work long hours too but at least i dont stand all the time compare to you that you are hairdresser and have to stand and you can using a good high stool for you to move around and that handy as where i work they get good equipment for disabled people who cannot stand for long and get a special chair to make them comfortable and they do that to any chairs... so hope you are ok there though.. x

  • my pain and symptoms have become worse since i went mobile, just over 3 yrs ago i will still in my own salon, but my partner in business wanted to sell, i think the lack of proper equipment ie: chairs that lower or higher up, and basins for washing hair - not having that equipment has made things much more difficult for me - i get to some peoples houses and they dont even have a chair, they are sat on a coffee table lol xx

  • sorry i didnt realised that you are mobile... silly moo of me... gosh that strange and luckily i still have a chair that i had table and chairs in the dining room and now i have no room there so kept 1 chair for anything like having my hair done which i still do at my house... which is lovely having it done at the house than the shop and i had to go to the shop today as the mobile hair dresser had another appt so didnt have time to come to mine to get to her next appt so i didnt mind once in a while but not all the time hehe... so hope you manage ok doing the hair while you have endo.. x

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