Thanks to Jo Gifford at The Dexterous Diva for her inspirational post: Honesty.

As Jo says, being honest isn’t easy, is it?  Being in pain for so long without a diagnosis can mean that although you may know something isn’t right, you are working under the false premise that everything is normal with your body.  You could say I went through a grieving process after my diagnosis.

The seven stages of grief are:

  1. Shock and denial
  2. Pain and guilt
  3. anger and bargaining
  4. Depression, reflection, loneliness
  5. The upward turn
  6. Reconstruction and working through
  7. Acceptance and Hope

For me, I think I experienced the first three stages at once – going backwards and forwards through these stages like a remote control car that bounces across the room and into walls before being turned around.  I was suddenly 17 again and full of feelings I could not control.  I tried to carry on my normal life without any help – partially because I was trying to get pregnant at the time so couldn’t take any medication.  Also partially because I was too proud to admit that I actually had a problem…

Although I told people at work what the condition was, I tried to get along at work with no help.  This resulted in me not coping with anything well.  Despite the fact that the first surgeon lasered off my endometriosis legions, I needed time off work periodically simply to cope with my pain.  I know I should have discussed it with my HR people in detail but, at the time, I didn’t.  I felt weak enough as it was, I didn’t want to feel as though people had to make allowances for me.

Because my first husband would not discuss my illnesses with me made me feel lonely and less of a woman.  I would say that the long hours he spent at work was a real problem but after my surgery he simply went back to being himself.  He never realised that I might need more support and I was too much in denial to admit that I needed his help.  I was angry at my body that I could not fall pregnant.

I was in a downward mental spiral: I had a diagnosis but wouldn’t discuss managing my symptoms; I felt guilty when I was in pain which was made worse when my first husband would make snide remarks implying that I was lazy when I was in pain; I was angry that I should have to endure this pain that no-one else seemed to understand.  Of course it didn’t occur to me to help people understand my pain: I preferred to endure it all in silence – which made my depression and loneliness worse.

I didn’t actually achieve honesty until I got to stage 6.  I officially gave up trying to fall pregnant.  I started taking lots of medication in an effort to get on top of my symptoms.  I took a neural inhibitor, painkillers, HRT patches for my PCOS symptoms (which provoked my endometriosis symptoms), and ultimately I gave in and started taking anti-depressants.

At the same time I separated from my husband and became close friends with Helios.  Where my first husband didn’t understand, Helios did.  Where I felt lonely and depressed, I started to hope again.

That was years ago.  Now I have a pain management system that works reasonably well for me.  I wouldn’t say I’m delighted – only a cure would make me completely satisfied – but I manage with the cards I’ve been given in life.  Although I am not in a position at work where I can work from home, I am honest with my work colleagues and, on the days when I am in pain, I am given tasks that I can cope with.  At home I have my wonderful wonderful husband who never makes me feel guilty or lazy.  When I am in pain, he asks if he can get me anything and then sends me to bed.  I know I’m bound for bed when I don’t have the energy to argue – so I head for bed.


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4 thoughts on “Honesty

  1. Well said, Foxy, and sadly that pattern of depression and struggle to deal with the emotional side of endo is one we all know well. The need for a partner who understands is enormous in endo women; glad we have men who are our rocks.
    Honesty is always the best way. Sending massive hugs, you are wonderful xx

  2. Thanks very much for your comment and the hugs! It’s taken me years to get to this point emotionally and I’m hoping that, the more we talk about endometriosis, the more support we can give women who have recently been diagnosed. If we’re brutally honest, we may give the rest of our endosisters a bit more courage. I think it’s essential that we remind our endosisters physical and emotional symptoms – and that we have to treat ourselves with care.

    For the record, I love your blog Jo. It’s no wonder you inspired me! Thanks very much!

  3. I think I’m still dealing with many of those stages, I sometimes wonder if I’ll ever not feel some depression/grief/sadness/anger over this. Sometimes I’m so accepting and have such a rosy outlook…and sometimes I’m just flat out ANGRY. Sometimes I’m so depressed, I can barely get out of bed. I just want to be normal again, whatever that is. And I worry about what will happen with pains when I do find a job. I was fired from my last job for needing surgery – I was very up front with them and honest and open, and it bit me in the butt. Now I’m scared to tell anyone about surgery, or endo, or any of it!

  4. Thanks for your comment Layla. I know it’s no consolation to you but I know exactly how you feel. I was diagnosed in 2005 and still go back and forth with the anger and frustration of it all. And as for your previous employer – I know how you feel there too. I’ve not been fired for my endo problems but I have had problems with employers telling me I’ve taken too much time off work… It’s just not good enough, is it?

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