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

The 5 (or 6) stages of Endometriosis

Receiving a diagnosis for endometriosis will generally cause a flurry of emotions, running the gambit from mild confusion to eerie calm or mild hysteria.

I had spent the majority of my life as an athlete, eating healthily and staying fit were priorities for me and in one afternoon, I was informed that it hadn’t mattered at all. The body I had worked to keep fit had let me down and was falling apart and I came to know it intimately.

It was only after I abstractedly reached the end of the process that I realized that my process for coming to terms with the situation had closely mirrored the stages of grief.

Disappointment

While this is not generally part of the recognized stages of grief, it was a distinct and momentarily crushing part of my process. I had researched endometriosis amongst other possibilities for my symptoms and while cancer is infinitely scarier and more serious, the confirmation of endometriosis after finding a cyst was the most likely and as a result the most dreaded.

Denial

Despite hours of research and despite the fact that endometriosis was by all accounts the least life threatening- in an end your life kind of way, not make your life miserable kind of way. I still couldn’t process it. I decided that while I had endometriosis, it couldn’t be that bad. They would go in, drain the cyst, cut out the endo tissue and I would be done. Finished. Healed. Back to normal… Lets just say I spent a while on this part.

Anger/Fear

There is no cure. There is no cure? There is no cure! Seriously? Seriously! What do they mean there is no cure? Of course there is no cure they don’t care. I mean seriously? There’s no cure? And so it went, over and over and round and round. In truth I knew the anger masked the fear slithering through me. Would I be a weaker person now that I had a condition? I worked in a fast paced industry and even if I didn’t, being in pain and on constant medication was incomprehensible.

Bargaining

I didn’t bargain.

I don’t know why.

Maybe I was too busy being angry and afraid.

Depression

It felt like punishment. Rationality and logic lived on another planet and the feeling of helplessness was insidious and for a few weeks I wallowed. This particular stage hit me at different times, right at the beginning, when I was in denial and even after acceptance. It comes and goes albeit to a much lesser extent and I have learnt to treat it as good days and bad days. On bad days I try a little harder.

Acceptance

And here I am. Acceptance. Accepting… with the nuanced and evolving – if untreated, nature of endometriosis. I’m sure I’ll be dealing with this stage for at least the rest of my pre-menopausal life.

Bringing me to the first stage of the pain toolkit by Pete Moore, which gives an action plan for living with chronic pain. I will post about this next week, if you would like to check it out in the meantime click here.

What process did you use or are you currently using to accept that you have endometriosis?

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