Showing posts with label Basics. Show all posts
Showing posts with label Basics. Show all posts

Wednesday, 16 April 2014

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?


x

Monday, 7 April 2014

Errm... What?


Well it looks like you might have endometriosis…

If you’ve just heard those words from your doctor, here are some pointers we hope will help.

First off, don’t be scared, be attentive - in all doctors’ appointments and then be proactive. Endometriosis is an extremely individual condition and there is so much to learn about it, so start finding out as much as you can; go online, make notes about your symptoms and ask your doctors as many questions as you can think of about anything you want to know regarding the condition.

Next thing to do is to join as many communities as you deem worthy and necessary for support because even with the best family and friends in the world, sometimes you’ll need people that actually understand. Failing that sometimes you just won’t want to tell your parents, siblings, significant other, friends etc… that yes, you are in pain again and that none of the usual things are working and you feel like crap. The people you meet in these forums will give you advice, support and information you just can’t get anywhere else. 

After this, you have to become confident. You will go to appointments where they will make you feel stupid… One of the first doctors I saw tried to refer me to a psychiatrist because ‘there was nothing wrong with my body’, so it will be up to you to convince them that you know your body so you know when something is wrong. They might have studied anatomy but your body belongs to you, you’ve had it your whole life…you know it better than they do.

Finally, find some hope, because when you go online after hearing the word endometriosis yours is going to be in very short supply. Some days will suck and beat you down, you might spend some days on so much medication you won’t know your own name and then some days you’ll be so pissed off and in pain you’ll wonder what you did to deserve this. The answer is nothing, you didn’t cause this and it isn’t punishment.  If you have any of those types of days or any kind of day really, feel free to come hang out here because endo sucks, but life doesn’t have to. 

What kind of day are you having?