Face Making

Artist Gwenn Seemel’s bilingual blog about art, portraiture, free culture, and feminism.

Disability and my sense of self

2011 . 05 . 17 - Comments / Commentaires (7)

In the weeks after I discovered I have a chronic illness, I struggled with whether or not to tell anyone about it. At first, I told no one beyond my family and my closest friends. I was embarrassed that there was something wrong with me, and I wanted as few people as possible to know about it.

As the months progressed and my illness worsened, I realized that keeping my condition a sort-of secret was neither feasible nor useful. I needed people to know that when I missed appointments it was because my body wouldn’t cooperate. As much as I resented needing to make this excuse, it was unavoidable.

Slowly, necessity turned into a kind of activism. I started to want people to know that I have endometriosis. I wanted my disease to be visible. I wanted people to know for my sake, for their sakes, and for the sake of women’s health issues in general.

Through this, I came out unequivocally as a feminist and I changed my focus as an artist. I feel good about both these things. They give my new life a shape that makes sense to me.



a vine hanging onto a cedar bush

That said, I still resent the change.

I wish that the chronic aspect of my illness would evaporate and that the last year or so could be an eye-opening experience that’s all in the past tense. I’m fine with what has happened, but I want this episode of my life to come to a close.

My problem is not knowing how much to let the disease into my identity.

If I give endometriosis too much space, it feels like it takes over. It seems to define all that I am—both in myself and to the people in my life. On the other hand, if I don’t let the disease into my reality enough, I can’t find acceptance of my situation. And I want to make peace with this.  I need to.

As with most things in life, it comes down to finding a balance.


RELATED ARTICLES:
- Why endometriosis awareness matters
- Searching for my bearings
- Change


CATEGORIES: - English - Endometriosis - Philosophy -



(7) Comments / Commentaires: Disability and my sense of self

-- Amanda -- 2011 . 05 . 17 --

It is a very difficult balance to find, but finding it will continue to help you define your identity further because through adversity we learn so much about ourselves.

I was diagnosed with Endometriosis six years ago, but suffered for eight years prior to that, and so my formative teen years were constantly challenged by trying to deal with a change that most of my friends could deal with much easier than me. One of my friends recently said she doesn’t know how I cope with the challenges Endometriosis presents, but I told her that it is so much a part of my life that often I don’t even think of it as much as you’d think because I’ve learnt to accept that it is the way my body works… it doesn’t mean I like it or that it doesn’t anger me from time to time, but I have learnt to accept it.

I find the balance comes in realising that Endometriosis is a part of who I am, but it isn’t the only thing I am. I am so much more than it and although it sometimes pushes me to my limits, it is still only a part of a whole selection of things. So, for example, I am an Endometriosis patient, but I am also a daughter, a sister, a friend, a wife, a mother-to-be, a writer, a creative, a linguist, a provider… and so on and so forth.

Sometimes I know that a chronic illness can seem like it is taking over a larger percentage than we would like it to because we do have to take into account certain things when making plans and we cannot always plan to do something in advance if we are unsure if and when the Endo symptoms will flare up. And that can be hard. But slowly, as time progresses, you will find that balance and peace you are looking for regarding the Endo xx

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-- Lesley -- 2011 . 05 . 17 --

I hear you.

I was diagnosed with breast cancer seven years ago at the age of 32. I’ve been cancer free since then. I’ve also moved…changing my community and friends in the process. Those people that went through the cancer with me are not with me now, and probably 1% of those in my life now know about it. It seems odd to bring it up, but it seems odd to never mention it.

Like you said, I don’t want it to define me, but it is and was a big part of my life. Tricky.

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-- Gwenn -- 2011 . 05 . 19 --

Tricky, indeed! 

I don’t tend to think of myself in terms of labels when I’m on my own.  They’re useful for relating to other people—for giving people a way to figure me out (at least superficially) and connect with me.  By that I mean that calling myself an artist (for example) is useful in a social context, but I don’t identify strongly as an artist or anything else but me when I’m in my own space.

That said, endo has a different kind of hold on me.  I feel like it’s the label of “endo patient” that I’m trying to reconcile myself to as much as the effects of the disease.  Currently, I identify myself to myself as an endo patient.  It’s like I’m labeling myself so that I’ll get used to the idea. 

I suppose what I really need is time.

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-- Lindsay Dianne -- 2011 . 06 . 09 --

I have struggled, as a person with a disability, to admit that it is a part of my life and that it affects me greatly, but to still try to hold on to my sense of self. I completely understand where you’re coming from.

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-- Gwenn -- 2011 . 06 . 13 --

Lindsay,

It’s nice to connect with others who understand.  I’m glad you stumbled on my blog and I’m excited to dig into yours!

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-- Kitty Kilian -- 2011 . 08 . 23 --

The balance will come with time. You cannot force it. I speak from experience.. but I can’t go into it too much. Anyway, with every diagnosis come a lot of emotions and you cannot speed them up, they take their own time. Even when you think, rationally, that you are boss of your emotions, you are not, They are pretty independent. I have found it best not to resist that process too much. Don’t worry.. they will sort themselves out given some time.

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-- Gwenn -- 2011 . 08 . 27 --

Thanks Kitty!  It does seem that time heals all.

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