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:
- Shock and denial
- Pain and guilt
- anger and bargaining
- Depression, reflection, loneliness
- The upward turn
- Reconstruction and working through
- 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.