On the psychology of the affected

Last week, five women died from endometriosis. Two of them took their own lives and three passed on due to complications. Though the sadness remains, this outcome due to endometriosis no longer comes as a shock and I find myself thinking about the aspect of the disease that is often overlooked; The psychology or mental state of a sufferer. 

Conversations about endometriosis seem to wind down in one of two ways; 

(After discussing your condition and your current state) 

-If you mention that you are working or are not in constant pain the next statement is inevitably... 

"So you're fine now"

or 

-If you mention that you are still in constant pain 

"why don't they do something about it?" or the worst "you need to get used to it then, distract yourself then you'll forget it"

Now while distraction can work for some issues, there is some pain, the kind that wakes you up from dreams, that you just don't get used to.

What is difficult for the non-affected to understand is that even when you are coping with the pain or (for some women) apparently symptom free, a new reality has taken hold. You are now haunted by the possibility of some anomalous growth inside your body creeping around and spreading, attaching itself to yet more parts of you.

This is the psychology of a sufferer. To worry. To think of a new worst case scenario and try to prepare for it, because your worst has already happened. That eventuality you couldn't have prepared for. That condition you had never heard of and might never have learnt to pronounce is now in your everyday vocabulary. You have a disease, there is no cure. So of course, despite your best efforts to the contrary, you find yourself preparing for a new 'worst' because that too is now a possibility.

This thought process I have come to accept is as much a symptom of the condition as the pain and needs to be managed where possible in the same way. I don't necessarily mean medication, but rather that a concentrated effort be made towards it. We need steps to be taken to care for the mental health of sufferers because it is equally important and could limit the number of women who think they cannot cope and take their own lives.

Do you have any thoughts on how this could be achieved? 

If you feel like you need to talk to someone;

0808 808 2227 - Endometriosis UK helpline

www.healthunlocked.com/endometriosis-uk

They also have support groups, follow this link to find one close to you;

http://endometriosis-uk.org/support-groups