Herbs and essential oils are and have been healers and helpers for all of time, for humans and animals alike. I have really bad headaches – sometimes (a lot lately) they turn into migraines and these are not remedies so much as just helpers/soothers during migraines but they REALLY help and sometimes completely relieve my tension or sinus headaches.

I have two things that I use – one with dried herbs and one with oils. For dried herbs I just put one part each of eucalyptus, mint, and lavender into a small sachet bag or tie it up in a thin piece of cloth (cheesecloth works well) to make an herb bag. Then I just put it on my face and sniff it for a bit and try to nap or rest with it near my head.

When it comes to oils, I use the same three herbs. I use 15 drops of peppermint eo, 15 drops of eucalyptus eo, and 11 drops of lavender eo, dropped into 10ml of carrier oil in a (10ml) roller ball bottle. I prefer jojoba for the undertone in scent but also like grapeseed as it is a little thicker and has no scent at all once mixed. The last bit I made, I didn’t have either of those oils so I just used what we all always have on hand – EVOO extra virgin olive oil). To use this I simply roll a bit on my temples and rub it in with my ring fingers, kind of massaging. I often rub it down along the bone of my eye socket or even on my forehead for the cooling. Don’t get it in your eyes, though!!

EVOO is a great deal runnier than other carriers, in my opinion, but it blends well and I do not notice much of an underlying scent at all once its mixed well. Another note: you can use more or less of each eo – I played with this until I found what I liked best and what seems to work the best for me. I like the stronger scent of the eucalyptus and the cooling of the peppermint oil. Some have better luck with 10 drops of those and more of the lavender for relaxing. It’s all your preference. If you’re very sensitive to scents (especially with migraines), you may want to mix some with 10 drops or less of each. Again, personal preferences and what your body desires is what matters.

Neither of these things are a cure all (NOTHING is for migraines, except time, just to be perfectly honest – or so has been my experience), but these old time “remedies” really help to soothe any headache I have and often will help to clear up a tension or bad sinus headache (as the mint/eucalyptus) is so good for helping loosen and drain mucous).

I hope this might help someone out there if needed…just a random little thing I did again recently and wanted to share. Hope you are all well and have no use for these “remedies,” too!

Take care…

C.

Session tonight was…emotional. It was one of those tearful, snotty, sobbing sessions – one of those ones that I go into wishing I could slide down a razor blade into a bucket of alcohol instead because that would hurt less, but at the end of it am left calmer and numb and call my mother back on the phone and say, “hey, I love you. Despite all you do to make me hate you, I love you, and that’s why I have done the things I have done.”

I’m trying very hard to accept and continue to be myself, and appropriately deal with my mother, even while many people in my life are dumping their opinions and unwanted advice on me like seven dust on a yard full of fleas.

I believe that…

No one has the right to tell you how long your grieving should last or how fast or when you need to move on, not even your own mind. Follow your heart.

No one has the right to judge or hurt or ignore you – especially when they call you “friend.” Don’t believe them when they call themselves your friend. Friends don’t do those things – not on purpose.

No one has the right to tell you how to live your life or how to be who you are. Don’t listen to them. Don’t try to manage or live your life based on other people’s double standards.

No one has the right to make you cry. Don’t believe anyone who tells you that your tears are your own fault.

Just because you’re not dealing with things the way someone else is dealing with things is irrelevant – they’re not living YOUR life or YOUR situation or walking in YOUR shoes.

That said, sometimes we care about other people so much – the people who do these things to us – that we continue to try. We continue to take responsibility for them when we know or believe we have a responsibility to keep them safe – especially when they’re mentally ill or senile or sick…

Because while I DO believe in taking responsibility for our lives and in taking care of ourselves, I also believe in taking care of others – even those who have hurt us – when they need to be taken care of – especially when they are mentally ill.

If my husband, for example, had given up on me because of my depression and actions and words (or lack thereof) – and Lord knows how many bad episodes there have been throughout our relationship – if he’d walked away to take care of himself or because he decided not to “allow” it anymore, I’d be dead by now. I’d be dead two or three times over. And that’s the truth. But this post isn’t about my depression. It’s about my mother.

Whoever reads this gets to have their own opinion. That’s fine. But don’t comment to me about how no one has the power to make a person do or feel anything unless the person hurting allows it because that’s bullshit. That’s what my therapist and I have been talking about in session tonight – how that’s all I’ve been hearing for three days now from different people around me regarding my mother, and I’m sick of it.

People’s words – or even lack of them – can HURT. People DO cause tears and pain and it has nothing to do with what someone is allowing to “control” their emotions. That’s a copout and it’s blaming the person feeling the pain for feeling pain that they didn’t bring onto themselves.

Sometimes a person can’t “walk away.” Sometimes there is no choice but to allow it to continue to some extent, or even fully. Sometimes there is no other option but to bide your time and wait for your moment to “escape.”

So for those people who keep saying things to me like, “why do you “allow” it to continue this way,” or telling me how I am only responsible for myself, I have a question (or two or ten):

How many times did YOU choose to allow someone to continue hurting you (in ANY way) because you loved them, or because you FELT you had a responsibility to take care of them (whether you actually did or didn’t)?

How long did it take YOU to start blaming yourself instead of someone else for how they “made” you feel? I’m sure you probably ALWAYS blamed yourself for the actions or behaviors of others, right? I’m sure you NEVER, ever were hurt by their words or actions and only blamed yourself for “allowing” it. Pfft.

And then, how long did it take you to STOP blaming someone else? Or do you still say things like, “he is/was such an asshole,” or, “she is/was such a control freak,” or, “they were/are so ridiculous?”

You know what? He/she may have been or may still be those things. That’s the role some people play in the world. And they’re hurtful and they ARE to blame for the pain they cause. And you may not always be to blame for “allowing it to continue.” Every situation is different. Don’t judge mine.

From my therapist:

“Maybe a person’s situation doesn’t allow them to fully escape the person hurting them. Maybe a person judging, or telling you how to live your life and deal with your situations, even when you agree with a lot of their advice and wish that it COULD work for you, just doesn’t get it. Maybe they don’t or can’t grasp the full scope of your situation.

Or maybe, just maybe, other people just don’t have the heart or the character you have – not everyone is strong enough to endure mental illness or abuse and still love the person or care for the person who has or does hurt them (emotionally in this case), and not want them to hurt themselves, and want to protect them from dying or care for them while they are dying despite the pain they themselves might be feeling, or want to try to help them to help themselves.”

And so this all sums up where I currently am on the situation with my mother. Her idle threats don’t scare me. State laws don’t scare me (at this point). But I DO have a responsibility to take care of a woman who has no one but me and is literally going senile.

Not eating or taking care of herself.

Becoming a danger to herself and others.

Even if that care exists only in bringing in outside help and even if it means having to sometimes be exposed to her narcissistic and emotional abuse, I DO have and carry that responsibility.

She’s not my mother, but she used to be.
Sometimes she was.

Until session tonight I’d forgotten that sometimes she was normal.

Sometimes she helped me with school projects all night until they were finished (even if only because she wanted me to get an A for her).

Sometimes she cooked meals instead of delegating that task to my father despite his working, too.

Part of her controlling behavior was keeping the house spotless and sanitary and that’s was, in some ways, good for me and my health and well being.

Sometimes she made me clothes, with her own hands, because they couldn’t afford to shop for them.

Sometimes she hugged me, and meant it, even if I never remember her ever telling me she was proud of me unless it was in front of someone else.

There were others, but I’m finally sleepy now and will save them for later…

Tonight, my therapist cracked open a whole new set of memories from my childhood with my mother that I had blocked in the process of trying to block the bad ones. And tonight she made it a point, in “forcing” me to share some of those better memories, to remind me that despite my mothers illnesses, she is human – just like despite my illnesses I am human. That’s the thing I have kept trying to get people to understand about my heart and why I struggle so with the whole situation since my Dad died.

There’s a song by Rascal Flatts called, “What Hurts the Most,” that comes to mind and while it is actually meant to be about a romantic relationship, it reminds me very much of my relationship with my mother throughout my life. There are these moments – or have been – of being so close…and what hurts the most is not knowing how it could have been to have had her as my mother consistently when every now and then there would be a little taste of her being kind, being motherly, not hurting me…and those are the parts my heart still carries that keep me in this place of caring…

Don’t. Judge. A. Heart. You. Don’t. Know.

Don’t. Judge. A. Life. You. Don’t. Know.

Don’t. Judge. A. Life. You’re. Not. Living.

Partially rewritten from an old instagram account – the one that used to bear this username, I wanted to take a moment to catch up with you and tell you, in short, I’m doing a 5k in two weeks. 

I know, I know. What!?? My husband has been helping me prepare and is doing it with me, along with our little pup. It’s been a definite lesson in learning to listen to my body. Yesterday I made my best time, averaging just at 15 minutes per mile, which is basically shit for a runner but a miracle for someone pushing through with chronic pain. 

I suffered last night. Today I can hardly move. But this evening, weather permitting, we’ll be out again, pushing that time. Why? Because I WANT to. Neighbors and acquaintances alike are openly calling me crazy and expressing concern for my sanity more than my safety but using my safety as the key words, and I want to combine two things (this older writing rewritten for the now and a piece I wrote last night) and share it with you. Why? Because it helps me to share. 

Walk A Mile in My Shoes

I wrote this a while ago but was afraid to share it because I didn’t want to be seen as a complainer or as weak. This is what the stigma of invisible disease does to people. My friend sent me a challenge to share my truth as I used to – it’s called the #vulnerabilitychallenge. So, I AM going to post this & not be insecure, & know I am not complaining. 

If you have loved ones with CI or chronic pain, be patient with them. They can’t control their bodies & battle with them every day & some days every second. It’s hard to live with pain, especially invisible pain. Try to give them a break. 

Literally hours ago I felt like this black cloud over my head was lifting. I felt…happy. I got excited because the depression was leaving. But what I forgot is that it never leaves. It just rises & falls like the temperature…or the ventilator that kept my dad alive during his coma.

I realized I keep waiting – waiting to get better when I know I never will. I may not necessarily get worse, but never better. That’s what CI means. So I do the best I can…but forgive me when I suddenly crash, or snap at you, or act out of sorts or distant. It’s not just a mood. It’s not just pettiness or whining. Its not selfishness or taking you for granted. It’s fibrolife or a celiac flare. Don’t be angry with me & fuss at me or cuss at me or take it personally. Worse yet, don’t compare me to yourself or others – especially others with CI or depression. 

Instead, just take a moment to try to imagine your skin feeling like it’s on fire. Feeling like your legs are wrapped in barbed wire, and let down because it’s backpain again tonight, first headache in a while, leg cramps, stomach cramps, everything hurts, and it’s stress. My body reacts very bitchily to stress – especially extreme stress, like my preparations for this 5K. 

The day has settled down & now it all catches up with me. Don’t hold it against me if I don’t cope well with stress. But rest assured – I WILL walk on, I WILL keep pushing through, and I DO love you. But I am also upset with certain aspects of how I’ve been approached recently. 

It’s comparison that gets to me. Tonight I was reminded by a film I watched during this painsomnia marathon how my mother has always doubted me and how sensitive I am to rejection, being doubted, being abandoned as the weak or the crazy one…and how that has been feeding my insecurity lately from several different directions. This all in turn reminded me that I am plenty “enough,” and never “not enough” or “too much,” at least not for MYSELF, which is what matters, and I started thinking about how even though I know it will never happen, anyone who doubts me needs to stop judging and assuming and just sit back and watch me succeed despite the challenges I face or my ups and downs. 

Then I wrote this note (blog) that was amazingly well thought out and put together and accidentally deleted it because it posted twice but it was a glitch so when I deleted one it deleted the actual note (and yes I’m pissed). Sigh…

The whole idea was that I no longer believe that our thoughts alone create our experiences, or that life has “terms.” I believe that there is a reaction for every action and that regardless of our thoughts or best intentions sometimes bad shit happens. I don’t believe we can control our lives with our minds alone, and that our hearts and our spirits have just as much to do with it. I believe that our actions and reactions, good and bad, feed on themselves to create our lives, and I also believe (know) that our lives can be effected by the actions and reactions of others but that we ALWAYS have a choice in how we live and face our challenges. 

I don’t believe in living life on life’s terms, I believe in creating my own regardless of what life has to say about it, even if that’s the harder way of dealing with things sometimes, and I’m sick of hearing people tell me lately that I need to accept life’s terms, I need to be careful with my body or I’ll make it worse, I need to just accept that I’m older or that I’m sick and so I can’t do the things I used to. Pffft. I know that they THINK that they have my best interest in mind, but they’re not ME. How can they know what is best for me – especially when they’re only a neighbor or an acquaintance I ran into in the dollar store? They can’t – not even just because they had an experience and found out what was best for them. 

Look… Listen to me hard right now. How many people who get a cancer disganosis say, “ok, I’m terminal. I’ll just die now and not try to fight back?” Some may, I’m sure…but all the people I’ve ever known to get that diagnosis, in real life or friends/acquaintances online? They may already know they’re terminal and they’ll die but they still fight – 99.9% of people I know who have had that diagnosis have not just accepted it as “life on life’s terms.” I even asked Dorie one time, because I used to judge that choice and think, “if I end up like that I’d never choose chemo,” why she made that choice and continued to struggle with it even though it was that that was killing her and not the cancer… Her response? “It’s the only way I know how to fight this.” 

My experience with Dorie and cancer and caregiving and watching her fight…that was the moment that I stopped believing in life’s terms and started believing in the human spirit and in the human heart rather than some stupid idea about how life works the same for all of us. IT DOESN’T. In a general sense, we all live and die. Everything in between? Not exactly the same for any two people. That was a huge lesson and realization for me. I’ve always known we are all different and we all do things differently and for different reasons. But that was my first slap in the face of how stupid it is to compare people or hold them to a standard we might think we have for ourselves but that can change in an instant based on any number of scenarios we may face. 

Fighting my body but learning to listen to it at the same time has reminded me of that. Especially today, after reaching that milestone in my mile time. My hip and my knee – my whole right side from the ribs down, really, is screaming at me. But it’ll pass – and it would have screamed anyway, probably louder, if I hadn’t reached this point. It would all come in waves regardless of any choice I did or didn’t make – because hello…that’s how it works.

Anyway, all of this reminded me about comparison. That was the whole premise of this whole bit of word vomit to begin with. Don’t compare – don’t compare ANYONE but especially not people with mental or chronic or physical illnesses in general. It’s not fair, because we ALL do things and face things and accept things differently and at different times and in different ways and even on differently on different days.  

I get that people may think I’m super crazy or annoying because I deal with life at both ends of the spectrum to an extreme and refuse to just exist or live somewhere in the middle but that’s because I don’t WANT to be or live a mediocre life. And, it’s also because I’ve always been a passionate and very free spirited person and I’ve always had to fight – it’s a learned behavior. I’ve always had to fight – those are hard words for me to “say” out loud, but it’s true and a realization that deeper discussion in therapy has helped me to accept.

I’ve ALWAYS HAD TO FIGHT and it is a LEARNED BEHAVIOR – my mother, my health (yes even as a child – mostly because of allergies and reactions which we now know was related to celiac but especially the time I had chicken pox and then scarlet fever and almost died when I was 7, which is what led to my heart issues as an adult), my depression, and a whole hell of a lot of people in my life as a young person (family, not people just randomly existing in my life, but yes, some of those…) who never accepted me because I was adopted and who always judged and hated me and belittled me because I was different…I was bullied a lot in school when people found out I was adopted – and I still have no idea exactly how that happened; because of how my “family” treated me I NEVER talked about being adopted to anyone. I guess there’s always that “one friend” in middle school… LOL I digress…

Rest assured – I may appear weak at times, especially when depression has me down – depression is the hardest and cruelest battle I face and yes, I face it head on daily and “fail” miserably sometimes in the eyes of others and even myself when I forget that surviving another day is a huge achievement some days, but weak is the farthest thing from reality that I am or that ANYONE with depression is. It’s the farthest thing ANYONE with ANY disease is, physical or mental. So just because someone doesn’t complain or express thoughts about their illness to you and you think, “ohhhh they’ve got their shit together, why don’t I or why doesn’t she or why doesn’t he?” Just don’t. Because they DON’T have their shit together. They’re just dealing with it in a way that makes it look like they do – and if they’re not talking to you about their struggles it’s easy to think they’re not struggling. 

News flash – not everyone talks about their struggles. Some people are very private. Some only express their physical and emotional exhaustion when they’re alone in the shower or in bed at night crying themselves to sleep. Some express it with a scream into a pillow that no one ever hears. Some express it by not expressing it. Silence is a sound, too… I’m not one of those people that is very private, and that doesn’t make me a bad person or a weak person or an ungrateful person or a “not coping well” person… And tonight I’ve been reminded by art imitating life imitating art of how much I HATE to be compared to anyone else and how much I strive not to compare anyone else to myself or to others. 

I don’t want to hear about what you approve of or disapprove of how I have a goal to make it through this 5k coming up with a “broken body,” or about what I should do or what I can’t do or what precautions I should take and so on and so forth. I CAN READ and I have been researching my physical conditions a lot longer than you’ve been thinking about all the ways my legs might not work during a 3.3 mile trail run. Speaking of which, it’s ONLY 3.3 MILES. It’s not the fucking Iron Man. 

What I want is for you, if you’re one of those people, to just sit back and watch what I CAN do, despite my insecurity and fear and pain and my body that screams, “fuck you!” to me every time I begin and end a walk or a jog. I want you to sit back and choke on those words of doubt and judgments, even if you’re only thinking them. Because I will NEVER say them to myself and I don’t want to hear them from anyone else, and I don’t want to be compared to anyone else – especially not anyone else’s imaginary standards for me (which are generally double standards, anyway). Nobody does. 

Tonight I’m laying here with heat on one spot and ice on another, and you know what? I’m relishing in it – I feel strong. I think I’m stronger than the doubters and judges in my life because guess what? I’m doing something besides worrying about what everyone else’s is doing. I’m focused on MY goal and MY current “dream.” And I’m gonna get a T-shirt for this particular experience, whether I come in first or 80th or dead ass last. But what I’m really gaining is a window back into myself. And that is priceless to me, even if it costs me more than I have to pay in the end. 

**A memory…**

 

It is…

Dark soul…

Untamable.

Black.

Deep space, ever deepening.

Always expanding, demanding.

Churning black hole, hollow.

Sucking me in everyday,

Spitting me out every night.

Holding me hostage.

Prisoner.

Chained.

Bound.

Aching.

Swallowed.

But holding on.

No choice in the blackness.

Can’t afford to get lost…

Yet…

Feel my way around it…

Hold on to what can’t be seen:

Angel wings.

Butterflies in spring.

Positive thoughts.

Energetic streams.

Consciousness.

“They need…me.”

Private tears.

Silent screams.

Memories blur.

Sleep.

Restless dreams, where she smiles.

Brightness, but not enough to pull me out of pain.

Rain.

Tears inside.

Anger.

Resentment.

 

Shower it all away.

Scrub until the skin is as raw as the pain inside.

Sing Tiny Dancer…

Cancer…

Churning sucking churning sucking churn suck churn churn churn churn.

Today I thought we’d lost her.

((09-15-14))

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.