Who Are You? Life Aside from Illness.


Who are you outside of pelvic/vulval-vaginal pain?

For many people, including myself, this can be a difficult question to grapple with…especially when it feels like your entire life hinges on a diagnosis(es). My life is nothing like I thought it would be. I’ve had to give up my original aspirations and make new ones, and in many ways I’m still fumbling around figuring out what my life is now. BUT, I am not my conditions. In my minuscule and perhaps meaningless opinion, I feel that our conditions, even though they can play a rather large role (if not the largest) are still only ONE aspect of who we are.

As I said, I had to give up many things and find new aspirations, and while it has been upsetting in many ways it has also shown me just how many things there are in life to enjoy. Where I had one, or two serious hobbies/passions before I now have even more. I love jigsaw puzzles, gardening, sewing by hand, needle felting, cooking, and the list goes on. So while I have “lost” one way of life, I’m finding my way into another. It is certainly influenced by my conditions, but in many ways it’s that influence that has shown me just how many different things comprise who I am. While I have managed to “move on” I definitely have grieved, and still grieve occasionally for my “former” life. Grief is a natural and healthy response to a major change like illness, and definitely has its place in the process of moving forward.

I think as people who are often marginalized and misunderstood for suffering with health related issues, we have to be careful not to pigeon hole ourselves and to let our conditions become our entire identity. While I feel passionate about advocating for gynecological health, I also feel that it is only ONE aspect of who I am and I am careful not to let it permeate my entire life. That is to say that other than writing and sharing information I feel is useful… in my day to day life I prefer to live like I’m a person who doesn’t have these struggles. I suppose a bit of “fake it til you make it” mentality. While I will give advice to friends who ask for it, I truthfully prefer to leave the health talk for my little corner of the internet. You see, I feel that if I get too consumed by being in groups and slapping the labels of my conditions all over myself that I’m only falling deeper into a pit that I’m trying my best to climb out of. I’ve seen too many people whose lives become consumed by their illness, and who can’t think about or do anything else, including get better because they’ve allowed themselves to be overtaken by a label. Don’t get me wrong, there is power in having a name for your condition and knowing that you’re not alone, but it can also be a bottomless pit if you forget everything else about what makes you, you.

If you’ve never taken a day to try and live without the shadow of your illness I highly recommend it. Obviously you can’t get away from something that is a part of you, but you can make the effort to spend some time away from the forums and the health talk. Make a day that revolves as little as possible around your health by focusing your energy on an art project, or some other task that will take your mind on a different journey. For some this may be easier said than done, but it doesn’t have to be complicated. Sitting down for 15 minutes to do a jigsaw puzzle, read a book, or listen to some music can be all that’s needed to take your attention away from your health for just a short while.

Let’s do a little exercise, shall we? Take away your illness/conditions for a moment. Who are you? What makes you laugh? What excites you? Don’t forget these parts of yourself. If you’ve had to give up what made you laugh, or what made you feel good then think about what NEW things you could try. Not letting your illness be your sole definition is not only important on an individual level, but also on a relational level. If we forget who we are/don’t put in the effort to find/express new aspects of ourselves then we’re allowing ourselves to be a shell of our former selves and we’re not only taking away from ourselves, but our partners who are with us to share themselves and vice versa. Be bold! Don’t be afraid to try a new hobby, or way of expressing yourself. Join a book club or learn how to paint! There is something for everyone, and all is not lost when you have to leave things behind and start fresh.

I was never one for bucket lists, but I’ve found that in recent years making a mental bucket list has helped me to do more things, and to fight against being overtaken by my conditions. My latest addition to my bucket list is learning how to horseback ride.

So I ask you, who are you? XO

I had a dream recently in which I could hear this song in the background. I feel it’s somewhat relevant to this posts topic, but I’ll let you all speculate!

** Make sure to check out my guest post all about Sex with Interstitial Cystitis! The tips and advice are also applicable to other pelvic and vulval-vaginal pain conditions! http://bladder-help.com/sex-and-relationships-with-interstitial-cystitis/ **


Myth: You should wash your vulva with soap when bathing.

Truth: You should NEVER wash your vulva with soap because the vulva/vagina is self cleaning. Washing with soap can cause irritation, and upset the natural good bacteria necessary to keeping your vaginal ph where you want it to be! Always wash with water only!



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