How I explain to ENDO to others

As the more the All About Annie platform grows, the more questions I get. I find the questions normally are quite alike –

  • What diet do you follow?
  • How often do you exercise and what do you do?
  • What pain medication do you take?
  • Have you tried a mirena? What did you think?
  • How do you manage the pain?
  • What vitamins/supplements do you take?
  • Is sex painful for you?

The list goes on but all questions are normally the same. As of recent, one of the most common questions has been “How do you explain endometriosis to…..” it’s normally to a new partner, family, friends or boss. It has really got me thinking about how taboo the whole period saga is and it has really got to me that so many of you feel so uncomfortable explaining your poor uterus problems to others!16837805_948600241937040_389625654_n

I am quite an open, honest person and have no problem sharing what I go through – this is probably obvious considering I have a blog, facebook and instagram dedicated to sharing my life lol – so have no issue with opening up about the fact I have a broken uterus however I know this is not the case for all/most!

When I started my current job (big media company in New Zealand, Coordinating special publications) I was very honest with what I had. I told my manager in my interview and made her fully aware that I had a health issue. I told her what Endometriosis was and said “I had an operation to remove the growth a few months ago, at the moment my health is under control and I feel great, there is a possibility it could grow back however that could take years and right now, I’m perfectly healthy.” None of that was a lie it was the absolute truth. thankfully she hired me and has been awesome if I have had any sort of episode and needed time off, my pain tolerance has become quite high though and often I find myself working though it.

When my boyfriend and I started dating over two years ago I had just had an operation a 16833360_948600251937039_334993558_ofew months before so again, was really healthy. I honestly do not remember how I told him what I had, we had known each other for years and he probably found out through the posts I would share on my personal page. Funnily enough though his mum had actually had it and child-birth pretty much gifted her with two new lives – her beautiful babies life and her own new pain-free life with a healthy cleaned out uterus.

I think his mum having endo really helped with me explaining to him what it actually was. For months we would randomly discuss what endo really was and how it effected me although I don’t think he really had a full understanding of what I went through until I needed to be rushed to hospital multiple times a week. Or until the sex started becoming a chore for me due to the absolute agony it could put me in or when I was bleeding none stop for a month plus.

My friends and family, again I am just so honest however I think these are the hardest to open up to. They have known you forever and do not understand how this illness can come out of no where, or why you can’t go drink a bottle of vodka Friday AND Saturday night and party until the sun comes up, then do it all over again the next weekend.

They don’t understand why you cannot get out of bed to say hello to Grandma and Grandad or help cook dinner. This is the hardest one to explain to because “they know you better than anyone” and have “been there for you through everything” so this is “something they should know about and understand”, yet they do everything but.

I know it took my family a fair amount of time to understand the days I look the most beautiful could actually be the days I am suffering the most.

I just had to reiterate the fact that If I say I am not ok, I really frikkin mean it.

And again, it wasnt until they witnessed the episodes or heard the pain in my voice that it was like reality hit them and they understood.

I really truly think that due to the fact that we aren’t in a hospital bed 24/7 or stuck in a wheelchair or still have our the hair on our heads that people can appreciate or understand that our illness is real. Even those closest to you.

I know what really helped my Mum understand was getting her to come to my specialist appointments or womans health physio etc so she could listen in on our convos and really have the whole thing laid out in front of her. Same goes with my boyfriend.

A great way I have learnt to explain endo, even to strangers is “So the inside of my uterus actually grows on the outside…” and by then they are already grossed out and feel sorry for me lol.

The way I look at it is honesty is the best policy, when you meet a new man, tell him that you are nervous to sleep with him because sometimes it can hurt and ask him to please be careful.

When you go for a job interview, be honest and tell them what you have. Explain what you do to keep on top of your health. Employers love honesty and will probably be more likely to hire you because you have already opened up about your life and have shown honesty and loyalty whilst meeting them for the first time.

Friends and Family are meant to love you and care about you no matter what, yet vie versa. Be patient with them, show them really great google links and blog/Facebook pages – like All about Annie hehe – teach them so they understand! Remind yourself of what it was like when you were first diagnosed and the confusion that swam in your head, it can take years to have a great understanding of this horrible disease.

Dont be embarrassed to share with those in your life what you go through, we complain about others not understanding yet if you do not explain, how are they meant to know?

The more you talk about it, the more others will be aware. Be honest. Share your emotions. Encourage them to do research. Invite them to your appoints or make appointments so they can be explained the situation to by a professional!

If any of you have any great tips or want to share how you opened up about endo, leave a comment.

I hope this answered some questions lovelies

xxx

 

 

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