Supposed to…?

I was supposed to be having the time of my life.

Much to my surprise at the disdain many feel for Sylvia Plath, she gets it all so right in “The Bell Jar.” There is a strong resonance there for me, from the exploration of self to the sheer willpower to survive an experience…only to, as Plath herself did, give up in the end. I struggle and I strive not to reach an end like that. Some days and even for long periods of time, as I mentioned in my last post, that is extremely difficult to sort out and to sort through and to achieve.

I have struggled lately to write openly because my goal is to shelter the world from more negativity than it is already swallowed in. The struggle, the pain, the complication, the general melancholy… But it seems to me, after some of your comments here and some of the conversations that have taken place in my Instagram DM over the last week, that there is no sharing the overcoming and the victory without sharing the struggle. What good, after all, is a victory if no one knows what was overcome?

For the record, for those who are new readers or who are uncertain what the struggle is here, I am striving to overcome my emotional battles, learn to live with (or despite) my grief, and gain some sort of normalcy in a life plagued with chronic illness and pain. All of these things could easily remain invisible. They remain invisible to some despite how openly I express them in my day to day life. My biggest purpose in working through my struggle to share is two-fold. The first is to somehow be a part of ending the stigma of invisible illnesses, both physical and mental. The second is summed up in one word: community.

I’ve been having a conversation with my new friend bumblebeechula (from The Musings of a Young Lady Girl) about living in a place of constant undermining and doubt from those people who we go to for help – in this case, doctors – and how constantly coming up with a non-diagnosis is so defeating. It adds another, more emotional/mental element to the battle of living with chronic illness. Then, we attempt to share our experiences and unless we can find some (almost impossible, unachievable) super shiny, positive way to express them those around us begin to view us a pessimistic, self-absorbed, even self-loathing… That’s not the truth at all – it’s just extremely difficult to cope with an invisible illness, and it’s nearly impossible to express it in ANY words in a way that someone who has never experienced it or struggled with it can possibly understand.

Just a quick example here: yesterday at my session, I was explaining to Ginny (my doctor, for all intents and purposes, even though there is no help for this disease aside from diet) that I was really beginning to struggle desperately with anxiety and depression because of my Celiac diagnosis.  My husband, who was with me, quickly belittled my expression and my concern, and literally said the words, “she says that but all I can see is her doing better all around.” Exactly. That’s what HE can see. Because all of these issues – celiac, depression, anxiety – they’re all invisible to anyone who isn’t walking in my shoes. People can look at me and see the most put together, healthy, wonderful woman if they only see the cover. And that’s what they do, even when I try to open the book for them and give them a peek inside.

I hear everything from how I’m too young to be dealing with peri-menopause (even though it’s been scientifically proven that I am via my bi-weekly blood work and other testing), to how it’s ridiculous that I’d be complaining of issues with hip pain and pain in my hands (due to also medically diagnosed arthritis), to how gluten sensitive and celiac is just a total crock of sh*t, to how mental illnesses like anxiety and depression are just excuses not to do things and/or to avoid my true problem which is grief – which, by the way, is apparently something that is only a problem because I refuse to let go. What I personally find ridiculous is how, even if I pull out the paperwork and show people (hi, Mom) the reality of what my body is going through, it is quickly reduced to being all in my head, every single time.

I lost my mind over on Instagram earlier this week because the above experiences were finally culminated with some DM’s regarding my sharing of Sylvia Plath quotes. The one that really “broke the camel’s back,” as it were, was the one from a complete stranger, an eastern Indian person studying to become a doctor of some sort, who politely encouraged me by saying, “please stop feeling sorry for yourself and don’t put your head in an oven,” a play on how Sylvia Plath committed suicide. It just pushed me right over the edge – and the ensuing public conversation was about how, YES, I became defensive; I did not, however, become defensive of myself – it was for all the people struggling with invisible illness and how much harder their daily battles can become because of off handed comments like that. In reality, none of what I posted had a thing to do with feeling sorry for myself. It had to do with those quotes being exactly the reality of my life at this time.

It is beyond the truth: statistically, any 38 year old woman should be having the time of her life, whatever that means for her. Whether it’s reaching highs in her career, or being a single woman with resources who wants to travel the world, or being a homemaker and a mother, whatever she wants to do with her life, by 38 all the women I know are busy achieving their goals. The majority of them are having the time of their lives and living like crazy. Me? Not so much. I’m NOT having the time of my life. I’m busy struggling with chronic illness, the loss of both my mother and my father, the hopeful rebuilding of my marriage and my life, and the depression that is developing regarding all of those things…

I’ve been diligently working through “You Can Heal Your Life,” Louise Hay’s one-stop-shop for how to change your world and create a healthy, happy you, all by simply proclaiming it to be so, and I find myself becoming more and more disgusted with her methods and her ideas. It’s hard because no matter how many times a day I look in the mirror and proclaim to myself, “I am healthy. My body loves me and works just as it should,” it does NOT negate the fact that my body is not built normally on the inside and it will NEVER work just as it should. That’s just factual information – not doubt, not negative self talk…

My body is broken compared to a “normal” or “healthy” body and the thing that is broken about my body can only be managed for the rest of my life – it can never be “fixed” or “healed.” It’s so annoying…because I swear on my father’s grave that is not a negative statement or something that comes from a deep pit of negativity inside me. It’s just…reality. Some realities are not positive and happy. And therein lies my challenge of expressing it all without being read as Negative Nancy – because that’s the last thing I want to bring to the world…

As I mentioned, I’ve been conversing with bumblebeechakula about this and one of my most inclusive replies was, “Thank you for the encouragement to continue posting. I’ve been battling with that for a little while now, which is almost hilarious as I only started this blog this year. Sigh… It’s true what they say – it takes a village. Not just to raise a child, as the saying was initially about, but for so many things. Coping with chronic illness is one. I’m happy you’re part of my village, and grateful to be welcomed into yours.” This was in response to the most wonderful, perfect statement in her comment about dealing with chronic illness. “I think it’s so important to share our stories with other people.”

It IS important. And it is important for them to see ALL of it. Chronic illness, whether physical or mental, is hardly ever an easy experience. It is most often riddled with confusion, frustration, pain, and getting knocked down more times than you feel like you’ll ever have the strength to get back up from. Most of us DO get back up – over and over and over again, sometimes multiple times a day. But it’s not without struggle and it’s not without some expression of the pain, whether it’s a wince or a grunt or a moan, or a random, monthly rant to a friend or on our blogs or social media about that frustration and struggle. Those “once in a while” expressions of the reality of the struggle are not cause to label a person as weak, or negative, or a complainer, or self-pitying, or selfish. It’s cause to label them as a person who is struggling through some extremely difficult thing and COPING.

I think it is important to change the perception of chronic illness, as I’ve just described. I think it’s important to show all sides of it, and then, when we do have victories, no matter how big or small, they serve a far greater purpose in encouraging and helping someone else. Nobody who ever had it all from the get go ever made an impact in this world. Every single person who has made an impact in this world has had their own, personal, fair share of struggle – whether financially, physically, mentally, socially, etc., anyone who has changed anything in this world has not done so without overcoming SOMETHING on their way to making an impact, and that, my friends, is something to be commended.

In closing this post, I want to share a sort of a story with you. It’s a story about this image (below) and where it took me.

I stared at this photo for quite a long time. It really resonates with me, much like the Sylvia Plath quote I shared above. It forces me to consider how this is a very good representation of what life often feels like when you have an invisible illness or disease; when you struggle with chronic physical or mental illness that you can’t prove to anybody.

After some of the responses to my DM’s after my Sylvia Plath posts, I had a friend – a good friend – reach out to me and say, “you know you don’t have to defend yourself or your choices. You’re under no obligation to defend anything to anyone.” That is SO true, but I think what I realize from this comment and from thinking about what she said is that it’s not defense of myself that is my concern.

I do not defend my choices of posts. Rather, I defend the general issue – the open expression of the struggle people face when they are battling depression. Especially in conjunction with chronic illness, it’s something people tend to not be able to wrap their heads around. It’s a struggle they can’t grasp, and because of that they often falsely judge others and they publicly add to the stigma of both mental and physical chronic illness.

That’s where the root of my defensiveness lives. I don’t think I’ll ever reach a point where I don’t feel obligated to defend the world of the chronically physically and mentally ill against stigma. I’m upset at the population in general from that standpoint. I wish I could educate in a “better” and more tangible way, but for now all I have are my own experiences and thoughts. I have quotes, and my photography and writing. Those are my only tools, and the things that I’m good at. Those are the ways that I’m comfortable and best equipped to be an example. Whatever your way is, please USE IT. Please keep expressing.

My experience this week personifies the struggle of judgment, undermining, and insult that people face when they live in a world of chronic invisible illness. So many give up trying to express themselves because of this. Don’t give up. I don’t want anyone to give up. Ever. Especially not on themselves. THIS is what I want to change in the world. THIS is my goal. I want to help people to understand, and to BE understood. It is equally important, from both ends of the spectrum.

 

One thought on “Supposed to…?

  1. You know I sing the same songs over and over. There can be no victory if there is no struggle. One cannot exist without the other. One coin.
    Photography is how I express myself. If you look closely you see my pain and my pleasure. One coin.
    ❤😎

    Like

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