Anxiety, My Personal Demon, and an Un-suicide Plan

***WARNING–this post could be triggering if you have had/are having suicidal thoughts, are a suicide attempt survivor, or have self-harmed.***

 

This is a hard post to write.

I’ve written about my downswings with depression quite a bit lately, mostly because I’ve been struggling with one recently…going back over my posts of the past few weeks, it’s a reasonable guess that probably anyone who follows me on social media regularly can see that spiral plain as day. It’s as if a very different person is posting.

A very different person who needed help.

Yesterday, it all came crashing down and culminated in the worst anxiety/panic attack I’ve ever had. The worst one I’ve ever personally witnessed.

And it lasted for HOURS. Around half the day, actually.

I couldn’t be still. If I managed to be still, I couldn’t breathe. I couldn’t stop crying. I couldn’t focus or concentrate. All I could do was pace the house, even though I was in excruciating migraine pain to boot and movement made it worse. There was no winding down despite my best efforts, and the less I was successful at it, the more panicked I felt.

It’s a given that I wasn’t thinking clearly; not only did I not recognize what was going on until a few hours in, I was having suicidal thoughts.

Worst of all, I didn’t even think of calling for help once I DID realize my anxiety was out of control, and I was terrified more by the thought of going to the ER and being hospitalized than I was of my mental and physical state. I was caught in my own mind, endlessly running in circles…rather like an animal in a trap.

And the more I mindlessly struggled, the tighter the trap clamped down on me.

The one mantra that made sense that my brain kept repeating was, “gotta calm down, gotta get rest.” At some point near the end, I took a dose of benadryl and melatonin in an effort to force my body to do just that. Luckily, it worked and I didn’t take too many in my confused state (just to be clear, I do NOT suggest this as a solution to an anxiety attack, ever. I was lucky. I may not be next time, and neither may you). I managed to sit down and rock in place until I dozed off.

When I woke 3 hours later, my mind was much, much clearer. I was appalled to see just how off-kilter I’d been and for how long.

Aside from a few rambling texts to my boyfriend (who I was certain was pissed at me for ‘acting weird’ and who was working) and one Facebook post about my anxiety, I hadn’t “reached out” at all. I didn’t ask for help. I didn’t think at the time there was anyone I could ask.

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Clearheaded me knows better, and thinks it’s high past time I enacted what another blogger refers to as an Un-suicide Plan. (I definitely urge you to hit that link, it’s an amazing article.)

For me, that would be a plan with 2 or 3 people I can call in case of days like yesterday or suicidal thoughts…people who can talk me through until I’m in a safe mental place, or who can take me to the hospital if it comes to that. That way if one isn’t available, I’ll have another who is.

It makes sense- we have plans for our physical health going awry…why not mental health, if one is prone to getting derailed? And it helps to know what the plan is ahead of time in case someone is too worried to think of one off the cuff.

I’d like to suggest the same or variations of it for everyone who struggles with mental health issues–a crisis isn’t always being suicidal.

It can be anything that would put you in danger or lead to your danger zone–like say, a 5 hour unrelieved panic attack. Maybe the urge to self harm is yours, or a bout of severe depression, passive suicidal thoughts, or extreme anxiety you can’t tamp down on your own.

Hopefully by the next time we talk, I’ll have the details of mine in place and can have some more concrete suggestions for setting up your own plan.

Until then, be well and be safe.

– Selena

Let’s Talk About Depression and Suicide

****WARNING: If you have been or are suicidal or have lost someone to suicide, this post could be potentially triggering.
If you are in crisis or know someone who is, there are people who care. Please get help. At the end of this post is a list of suicide/crisis hotlines and a link to a list of ones worldwide.****

Recently I read an article about a new study that shows depression is not a mood that we “choose;” rather, it says that depression is a form of brain damage. Aside from the touting of positivity and mindfulness to counteract or keep at bay severe or chronic depression (which is bullshit–yes, positivity and mindfulness are great and yes, they do matter, but they are coping skills, not treatments or preventives), the rest of the article is something everyone who thinks depression and suicide are choices should read–New Research Says Depression Isn’t a Choice- It’s a Form of Brain Damage.

With the recent death by suicide of Linkin Park frontman, Chester Bennington, this conversation is even more important.

My tribute to Chester Bennington. May he have found peace at last.

Bennington openly struggled with depression and a past history of substance abuse. One of his close friends, Chris Cornell, died by suicide recently. Statically, Bennington was at higher risk of dying by suicide because of these factors.

So are many of us, for many reasons. As everyone’s reasons may be different I’m focusing on its obvious link to depression and mental illness, but chronic pain and illness are also frequent contributing factors.

But too often, this is not a conversation we’re having. And it’s one we should be having, not only when we lose a beloved and admired public figure.

And too often, the first reaction of many is to blame the person who suicides as “taking the easy way out” or “just giving up.” Anger at the person is also common for “making the choice to leave,” particularly by those left behind. The feeling that the person didn’t do enough to reach out is expressed frequently.

While these are normal reactions and I’m not going to tell you not to have them, I would like to say that for those of us at risk, these reactions are not constructive. They do not make us more likely to reach out when we are able, for fear of being judged for having such thoughts at all.

What follows are my thoughts and feelings on the matter, as someone who has lost someone to suicide and as a suicide attempt survivor, as well as the mother of one. Yours may be different.

First, let’s get this out of the way:
Suicide is most often caused/contributed to by depression and/or another mental illness. (Substance abuse can be another possible contributing factor, as can chronic pain and illness, as well other various reasons, but what I’m addressing is its relation to mental health.)

Depression causes physical change in the brain, folks. While depression can be situational, it does have aspects of physical illness such as chemical imbalances in the brain that control how we feel and the way we think.

Suicide is NOT a “selfish choice.” Because it is not a choice.
It’s not “giving up.” It has zero to do with those we love and who love us.

It isn’t even necessarily about wanting to die.
It’s being in such emotional and mental pain that we want it to end…and when a person is in that state, we are NOT thinking rationally or clearly because we CAN’T, not because we don’t want to.

Every time there is media coverage of someone who dies by suicide, the main reactions from many are often disbelief that the person didn’t have at least one person they felt they could reach out to; that they didn’t try hard enough to stay alive if they didn’t reach out; that they didn’t care enough to think about the pain they would cause their loved ones; that they should have ______ (insert solution here)…that there is always another option.

I’m going to say this one more time for those people in the back:
SUICIDE IS NOT A CHOICE.

If you have never struggled with severe depression and felt the utter hopelessness and isolation it brings, if you’ve never believed the terrible things depression makes you think about yourself, if you’ve never felt that opening up about your suicidal thoughts or plans would cause more pain to your loved ones than your absence would…SIT DOWN AND SILENCE YOUR JUDGEMENT, BECAUSE YOU HAVE NO CLUE WHAT A SEVERELY DEPRESSED AND SUICIDAL PERSON IS DEALING WITH.

I realize the previous statement may be upsetting to people who have lost a loved one to suicide, particularly if they ascribe to the notion suicide is a choice. And while I apologize for that, I cannot NOT say it.

The truth is that anyone who hasn’t been that person and who doesn’t personally know what it is like to struggle with depression and suicidality does not know how it can trap your mind.
And you do not know how it is possible to not only believe that the only solution is suicide, but that it will actually be the best and logical option for everyone, and that sometimes we can get through that dark place and sometimes it is literally impossible for us to reach out.

•Not because there aren’t people who care–but because when we’re in that place, WE CAN’T SEE THEM. Or if we do see them, they’re out of reach.
Yes, I’m absolutely serious.

•Not because there aren’t people who care–but because when we’re in that place, we don’t want those we love to witness our pain.
We do realize that seeing someone you love suffer is often more painful than suffering yourself. We want to spare you that.

•Not because there aren’t people who care–but because when we’re in that place, we don’t believe we are worth saving and that us continuing to live will continue to cause you pain and drag you down with us.

And most importantly:
•Not because there aren’t people who care–but because when we’re in that place, we can’t see anything but the overwhelming pain we’re in and the need to end that pain.
It’s not about being selfishly focused on our pain to the point you don’t matter to us. You do. You do so much. But just as a person can be in the grip of such physical pain that it’s all they can focus on, it’s truly possible to be in that much mental/emotional pain.

No, those beliefs and thoughts do not make sense, and if we pull through it we realize this. Yet when we are in that place, they are what we believe and feel and we literally cannot think ourselves out of it.

And unfortunately, coming through that dark place and back to our rational selves does not save us from that darkness reaching out and grabbing us again. And again. And again.
We can learn to recognize certain things that set off a downward spiral and strategies to help us cope with them; in fact, we have plenty of spirals you will never see or know about, simply because we came through them.
Not all spirals will be set off by something recognizable, though.
Not all spirals are the same.
And not all spirals can see us conquering them.

Hundreds of days that could have been that one last day.
And you know what? We’re pretty damn badass for surviving those hundreds of days…those ones you don’t see us “not giving up” through.

But it only takes one day of our illness getting the upper hand to bring us to a day you can’t avoid seeing–the day we can’t fight it enough.
The day you see as us failing…being selfish…giving up.

Unfortunately, all it takes is that one day to make our previously won battles not count to everyone who sees us as not trying hard enough…as giving up.

And if you are a “mentally healthy” person, you will never truly understand or grasp that.
You may come close, you may have had thoughts of giving up yourself, but likely you realized pretty quickly how senseless it would be and what you might miss out on in life, or how much it might hurt others.
And you can be thankful that you don’t totally grasp it, because we wouldn’t wish it on you and it’s something no one should have to feel.

What you don’t realize is that you are basing your opinion of our capability to get through it and think rationally by YOUR MENTALLY HEALTHY YARDSTICK, not by the reality of our illness and its effect on our ability to reason.

You wouldn’t condemn a person who dies from a physical illness or disease they didn’t choose to have…yet you would for the illness that kills us.

We didn’t choose to have it, either.

– Selena

The National Suicide Prevention Lifeline,[22] a 24/7 hotline for callers in the United States:
1-800-273-TALK
(1-800-273-8255)
1-800-SUICIDE
(1-800-784-2433)

TTY/TDD services at the National Suicide Prevention Lifeline- United States:
1-800-799-4TTY
(1-800-799-4889)

US Veterans Crisis Hotline:
(800-273-8255) press 1

The Trevor Project (American hotline aimed principally at LGBT teenagers), United States:
(866-488-7386)

American anonymous youth violence reporting hotline:
1-866-SPEAK-UP
(1-866-773-2587)

Crisis Text Line, United States:
741-741
A free, 24/7 SMS Hotline providing emotional support for those in crisis.

Lifeline, Australia:
13 11 14
Offers 24/7 crisis support and suicide prevention services by phone.

List of crisis hotlines around the world:
https://en.m.wikipedia.org/wiki/List_of_suicide_crisis_lines

Chester Bennington of Linkin Park has died by suicide

#DownTheRabbitHole #chesterbennington #restinpeace #suicide

Chester Bennington of Linkin Park has died by suicide at age 41.

I’ve been down with the Migremlins all day, and just woke up to this news. Ļinkin Park is one of my favorite bands, and their music has brought me through so many rough times. It resonates deeply with me, both in emotions I’ve dealt with in the past and currently. It grabs my soul and makes me feel less alone, and speaks to my heart.

As a suicide attempt survivor and suicide prevention advocate, it wrenches my heart every time I hear such news of another loss to suicide.

It also raises the increased need for awareness and the need to eradicate the stigma attached to suicide.

Attached to this post are some statistics and information about suicide and suicide prevention, along with resources for more information and lifeline/crisis text numbers.

Mr. Bennington…I wish you had had an angel to roam the shadowed places in your mind. 😥

Be safe, friends. Please. – Selena

http://www.cdc.gov/violenceprevention/suicide/index.html
https://suicidepreventionlifeline.org
http://reportingonsuicide.org/recommendations/

“Suicide is a serious public health problem that can have lasting harmful effects on individuals, families, and communities. While its causes are complex and determined by multiple factors, the goal of suicide prevention is simple: Reduce factors that increase risk (i.e. risk factors) and increase factors that promote resilience (i.e. protective factors). Ideally, prevention addresses all levels of influence: individual, relationship, community, and societal. Effective prevention strategies are needed to promote awareness of suicide and encourage a commitment to social change.” (From http://www.cdc.gov)

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The Masks We Wear

“I’m good…not great, but I’m okay.”

Are you really?

Well, no. I wasn’t.

But I didn’t want to worry anyone…didn’t want to bring them down with me.

ruok

Because that’s what we do, don’t we?

I wrote an article about it for The Mighty last September…about The Pretender Mask. The smile that hides the pain. The “I’m fine!” on days we definitely are not fine. The tough I’ve-got-this front when we’re falling apart inside.

About how I wasn’t wearing that mask any more to hide my illness.

So why do I still find that I’m wearing it at times?

Probably because at the time, I was thinking in terms of my “physical” illness. I’ve stuck to that one–I see no reason to hide it. But as much as I believe that many mental illnesses are often physical illnesses with a biological cause, and that they are every bit as important as physical illness…it seems I have trouble owning up during rough patches with depression and anxiety.

In other words, I keep finding myself behind the mask again…and again…and again.

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Skimming the surface during some of my hardest moments…not wanting to worry people…not wanting to talk about it.

Not because I’m ashamed or embarrassed to be struggling, but because it’s harder to SEE them in action. Because…well, they hide. And they hide so well that I don’t always realize I’m in the Rabbit Hole until I start climbing out.

Depression and anxiety are champion Hide-and-Seek players.

I can feel my physical illness; there’s no way not to.

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Physical pain day in and day out demands notice. Sometimes it demands so much notice that other things get ignored or go unseen. Sometimes those things just blend into the world of chronic illness so well because it seems completely normal to feel them when your illness gets the upper hand. Who wouldn’t be stressed and depressed?

I’m not saying this to make excuses. I’m saying it because depression is sneaky…and it lies. And sometimes it even hides itself from us by camouflaging itself as background noise until it starts making its own demands to be felt.

So I’m no longer saying I never wear my Pretender Mask. It feels like hypocrisy to say so when I realize I’m taking it off too often.

But I am saying that I’ll keep trying. I am saying that I’ll continue being transparent, even if it’s transparency after the fact.

Because my struggle is the struggle of so many of us…and if my struggle helps someone else feel less alone in theirs, it’s worth baring my not-so-pretty pieces of me.

– Selena

Owning My Story 

My blog is my story…this page is my story…every piece of art I make, every poem I write…my story.

My story is written in every breath I take, in the scars I bear, in the people I love.

My story is worn in the lines on my face, the smile on my lips, the tears in my eyes.

This is my story…and I tell it so you can know that you are not alone.
– Selena

Grief and Perseverance

The 12th of every month is hard for me…and this is why.

Grief.

One five-letter word carries a punch to the heart like nothing else.

Grief means loss. Grief means pain and suffering. Grief means mourning.

Grief means someone or something you love is gone. Grief means a gaping hole in your heart.

Grief means that things will never be the same again.

I see posts about the “stages of grief” and the “grief process” — and I hate it.

It makes it sound so sterile, so clinical, so neatly organized.

I hear people wondering when someone will “get over” or “get past” their mourning and “move on with their life” — and I hate it.

It makes it sound so easy.

It makes it sound as if having something or someone ripped out of your life isn’t profoundly life-altering, as if you aren’t living and breathing every day with something that has wounded your soul, as if you’re defective when someone feels your “official mourning period” should be over.

As if the space in your heart that has someone’s name on it should be boarded up, or worse, cleaned up and ready for occupation, all the cobwebs of pain swept away.

As if it didn’t matter.

As if that space could be filled up and smoothed over by time like patching a hole in the wall.

My niece, Sydney, died in a car accident 15 and a half months ago on her 18th birthday.

One moment, we were posting birthday wishes on her Facebook page, the next she was gone.

My sister’s first child. The first to be imagined when taking pregnant belly pictures. The cousin who was a few months older than my son, who grew up with my children, who was smart and goofy and stubborn and believed things would always get better if you persevered and hung on. The older sister to two other beautiful girls and the one who usually had a kind word for anyone struggling.

I’ve learned things about grief I never thought I would and that I never wanted to, and I’ve watched my sister suffer immeasurably.

Time doesn’t heal all wounds, and some scars like to reopen.

It’s watching your sister in pain you can’t take away.

Ever.

Grief isn’t something that we “get past” or “get over” so much as we learn to live in spite of.

It’s learning to breathe and walk all over again. And again. And again.

It comes and goes like waves. The holes in our hearts are like the sand on the beach. It erodes and it fills with the tide, but it’s never actually exactly the same again.

And like the tide, it doesn’t really stop.

And the truth is, you don’t want it to. Because grief is the price we pay for deep love. Mourning means we had something worth missing.

And that’s OK.

Because the alternative is never having had that beauty in your life.

Some days — even years from now — the pain will stun you, but some days you can smile at a memory without it being through tears. Some days the pain of them not being here will be a physical ache, others you’ll feel as if they’re smiling and standing right by you and others you’ll feel numb.

Some days you will be OK, and some days you will not.

And some days you will be all of those at once.

And that’s OK, too.

See, the thing that the “stages of grief” forgets to tell you is that it’s a continuous cycle rather than a procession from Door 1 to Door 2 to Door 3 and so on. And not everyone will visit those stages in order, and some will skip a door or two. There’s no time limit on grief because there’s no limit on love, and there’s no right or wrong way to mourn. Those feelings you think you should be over aren’t right or wrong — they just are, they’re valid. And letting yourself feel them is a part of healing.

Sydney believed there would be better days. This is my tribute to her. I believe sharing this will help some of us persevere until we find them.

Persevere

Persevere
Though the road be
Paved with heartaches
And disappointments,
Lost chances,
Faded dreams —
For each new day
Brings new chances,
Brighter days,
Another dream,
And new choices.
Persevere
And LIVE life
For all it’s worth
In joy and in sorrow,
For the next day
May be yours.

In memory of Sydney 3/12/1997-3/12/2015.

(Originally published on The Mighty, June 16, 2016.)

Migremlins, Anxiety, Depression…oh, My, July!

This has been a really rough month so far. The migremlins are thorough beasts of late, depression has been a sticky tar pit, and anxiety…anxiety has been the worst. 

EVERYTHING is a battle…even setting up a psych appointment, which I know I need to do. I’m out of anxiety meds, and you would think that would spur me on, right?

Well, actually, I’m embarrassed I let it go so long…the avoiding the phone call to set up an appointment thing. It’s become a demon, that phone call.  So what did I do? Kept putting it off…and off…feeling more stupid over it…putting it off some more…

How can a simple phone call be so scary? I used to make phone calls for a living! How can I literally start getting frightened by the thought of a phone call? But it seems I can, and that I can perpetuate it and blow it out of proportion even more. I know it’s ridiculous. 

So why haven’t I done it? 

Deep breath. Tomorrow. I’ll feel better tomorrow…I can do it then.

And that’s why. Because tomorrow never comes. So I’m not going to say tomorrow. I’m going to say that I’ve set a reminder, and I will do it then, because I need to. I know I need to, and I’m not going to keep defeating myself. 

Because I’m a warrior, and if I doubted that, there’s this nifty Anxiety Warriors shield my Spawn made to remind me:

Because “I am stronger than myself.”

Because I will not give up and I will not give in. Anxiety does not have the final say.

I do. 

And I’m glad my Spawn reminded me of that. 

– Selena 

Awareness Months End–We Don’t 

It’s the last day of Migraine and Headache Disorder Awareness Month.

Every year on this day since I began raising my voice for awareness, I feel almost sorry for my new social media friends/followers who don’t yet realize that for me, awareness months never really end. Did they get into this thinking I’d share less any other time of year?

Anyone who might have thought so learns otherwise pretty quickly.

You see, awareness months may end…but we who are are struggling each day with stigmatized, undertreated, and under recognized disorders don’t. The diseases don’t go away quietly just because the month is over; our fight continues.

And I’ve never been one to exit the stage quietly (literally, because I’m a clutz and likely to trip over something). 😉

– Selena

Down The Rabbit Hole 

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My favorite quote. Background photo is a bouquet of flowers picked by my grandspawn.

Today is Chronic Migraine Awareness Day.

What do I say about something that has changed me and my life as fundamentally as Chronic Daily Migraine? Actually, quite a bit.

But I thought I’d start with a story about why I say anything at all about it.

Once upon a time, almost 6 years ago, there was a woman whose entire life was turned upside down and inside out…and that woman was me.

I’m a mom of four, a grandma of four adorable grandspawns, a daughter, a sister, an animal lover with 16 outside cats (9 are kittens), two inside cats (I know, crazy cat lady, that’s me), two box turtles, and a huge German Shepherd slobber machine. Most of our pets are rescues.

I love rock and alternative music, I write poetry, I am an artist, and I advocate for awareness of mental illness, chronic migraine/chronic pain, and domestic violence. I write articles on occasion for The Mighty  .

I am also one of the approximately 25% of migraineurs in America who suffer from chronic migraine, defined as 15 or more days of migraine symptoms/pain per month; at best, it’s like taking half a month and throwing it in the trash, and for me the symptomatic days number higher.

Understand that this is WITH treatment from my primary care doctor and a specialist; daily chronic migraine in particular is just very hard to treat (if you’ve found this blog, you probably know that already). Part of the problem is that we still don’t know much about migraine; although it’s ranked as the seventh highest cause of disability worldwide- as disabling as quadriplegia, active psychosis, and dementia, according to the World Health Organization- migraine receives less than 53 cents per person in allocated research funding. That’s much lower than many serious conditions.

For me, this condition is truly disabling–since 5 years ago when my episodic migraines progressed to chronic daily (that’s 24/7, 365 with a baseline of symptoms/pain that never leave), I’ve dealt with job loss, loss of time with family, loss of health insurance, having to give up going back to college, losing people I thought were friends who just don’t think my disorder is truly serious or for whom someone with chronic illness just doesn’t fit into their lives, and the grief of losing who I thought I was and the life I had.

One of the challenges I face isn’t physical; it comes from outside sources, from people who don’t understand this condition. Sometimes, people assume that I am still struggling because I’m not motivated enough to find proper treatment.  However, it isn’t as simple as just calling your nearest neurologist.  Most people think a neurologist is an expert on headache disorders, but not all neurologists are migraine specialists, and not all headache specialists are neurologists. Unfortunately, for the 38ish million migraineurs in America, there are only a bit over 500 headache/migraine specialists…which means many migraineurs may not receive an official diagnosis of migraine for years, and may have to travel farther for treatment. The wait to see a specialist can be months. Trying out all the medications used to treat migraine can take years if you aren’t lucky enough to find one off the bat. And many migraine sufferers don’t ever seek treatment, because the belief that it’s just a bad headache is so prevalent that non migraine sufferers aren’t the only ones to buy into it. I’ve talked to many migraineurs who don’t know much more about their disease than the general public, either because their doctors aren’t knowledgeable about it or because they don’t think it’s serious enough to seek treatment.

I was also diagnosed with depressive disorder 4 years ago, which is very common with any chronic illness, particularly a disabling one. In the right circumstances, most people would expect some degree of depression… for example, when a person with a life-limiting illness who has few options for relief cannot see an end to the pain. People might even consider it odd if that person DIDN’T suffer from depression.

But although living with chronic migraine is what brought me to being diagnosed, I’ve lived with depression most of my life, much of it in denial that I WAS depressed. It was very easy to write off my dark spells as reactions to situations in my life…growing up with an abusive father, an abusive marriage, raising 2 kids who are diagnosed with mental illnesses themselves, stress, etc. However, my reasoning was pretty selective, because it conveniently failed to explore the fact that I self-harmed from my teens into my late twenties, as well as a suicide attempt at age 19 that was very nearly successful.

But when the Chronic Migraine Fairy arrived, I couldn’t distract myself with the problems and people in my life anymore; I had to accept that they weren’t solely responsible for those dark emotions and trips down the rabbit hole, as I call it (hence the name of this blog). And as my antidepressant medication brought me to a more stable place, I realized that clinical depression is different than being extremely sad over a situation….and that the dark places my mind had been were as familiar as an old friend, because I’d been there before.

Depression lies to us. It tells us our problems aren’t important. It tells us we aren’t important. And its voice is powerful and persuasive. It can even convince it us it doesn’t exist, at least for us.
Many people see mental illness as a character flaw or weakness rather than a disease as real as diabetes, even those of us living with its impact…but it is so important to realize that many mental illnesses have a genetic or physical cause, such as chemical imbalances that regulate mood or affect our thought patterns.

Seeking help for a mental illness is no more a weakness or character flaw than going to the doctor for a “physical” illness.

The silence surrounding mental health needs to be broken. If you are dangerously depressed or suicidal, it is not weak to get help. It’s one of the hardest, bravest things you can do. If you aren’t taking advantage of every possible weapon in this fight that may help you cope better (be it therapy or medication or both), you are putting yourself at risk…and you are too loved, needed and important to lose.

Too often, we with chronic or “invisible” illnesses feel very alone, even with supportive friends and family…because no one who hasn’t been down our particular rabbit hole can’t truly grasp what we fight every day.
In writing this blog and sharing my experiences and struggles, I hope to help others feel less alone in this fight.

Update:

Since the original writing of this story a few years ago, I’ve also been diagnosed with anxiety and tardive dyskenesia. I’ve lost medical coverage, and subsequently lost treatment for migraine disease. I’m still receiving mental health treatment (thankfully) through MHMR (government service for low income).

It’s been hard. I’ve been without treatment since October 2016, and I won’t lie, I’ve danced around the Rabbit Hole a few times since then. But I’m surprisingly okay mentally and emotionally. I have my bad days like anyone else. Some are very bad; that’s where learning to spot the Rabbit Hole up ahead has mattered most.

I’ve even come to see the good in my Rabbit Hole, because like most things (and people), it’s neither good nor bad–it just IS. Sometimes pretty, sometimes treacherous.

But always part of me.

Physically…it’s definitely been much more limiting to not have treatment. It’s a given that my symptomatic levels are not good most of the time. (Probably one contribution to my upped anxiety.) I’m still in the process of seeking disability, and am on my 3rd denial. (More fodder for anxiety.) It’s probably time I bring in a lawyer, but I’m feeling ridiculous, unexplainable trepidation about finding one and keep putting it off, which I’m sure isn’t the best for me…I’m working on nerving myself up for it.

But I’ve survived this before, the No Treatment Merry Go Round…I’ll survive again. I’m just fighting a bit harder, and taking more time for me.

The journey has been and is painful. There’s no way around that. I never expected this life, and never would have chosen to be this person.

Yet here I am…I’m not sure if I’m actually making the best of what I was dealt, or just trying to give myself a reason to think that’s what I’m doing.

All I know is…once you’ve been down the Rabbit Hole, you’re never quite the same again.

Why Awareness Months Matter

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At the Renaissance Festival with my sister (October 2016)

As someone living with chronic migraine, an often misrepresented and stigmatized disease, I do a LOT of awareness posts, not just during the month delegated as Migraine and Headache Disorder Awareness Month (June), but year round…because my disease doesn’t just disappear when awareness month ends. It’s 24/7, 365; the unasked for genetic gift that keeps on giving.

More often than not, those living with an illness are the ones who advocate for it for a few reasons:

▪ Because who knows it better than those affected by it most or those who specialize in treating it?

▪ Because misconceptions and stigma about many invisible disorders and chronic illnesses abound among the general public (and frequently among those in the medical field) to the point that even some of us living with it believe them.

▪ Because all too often, if we don’t, no one else will.

So I had to share the story this beautiful post written by my sister Daphne in response to an Awareness Month graphic I made last year. My sister is my light on dark days, the best friend and sister a girl could ever ask for, personal cheerleader, tear wiper (and she doesn’t get mad if I have a good, snotty cry on her shirt), empathetic listener of both good and bad news, and all-around awesome person. I’m well aware of how lucky I am to have a supportive family–I’ve met too many chronic sufferers who do not, and it hurts my heart for them.

If everyone were even half the person she is, the world would be a much kinder place.
She gets right to the heart of what awareness is about, for my illness and others.

“This is my sister Selena, whose life was changed several years ago when her migraines went from episodic to chronic.  Now, I know people wonder: what is the point of an awareness campaign?  Is it simply to raise money to fight a particular problem?

 

Awareness is defined as “knowledge or perception of a situation or fact”.
Therefore, at its most basic level, that is the point of an awareness campaign: to increase people’s knowledge that, for example, chronic daily migraine is a real thing.  Or Fibromyalgia.  Ehlers Danlos Syndrome.  Chronic Fatigue Syndrome. There is a very long list of medical conditions that we aren’t aware of, because they simply aren’t part of our lives.

 

And that’s okay; we can be very, very grateful this is not our particular burden to bear.  It isn’t morally wrong to be unaware of all the health conditions (mental or physical) that can derail people from the lives they had planned for themselves.

 

What’s not okay is using our ignorance as a shield to deny that this is someone else’s reality.  We probably do it in self-defense; it’s easier to pretend that the person with Chronic Fatigue Syndrome is lazy and wants an excuse to stay in bed all day, than it is to accept that CFS is a real problem that could potentially affect you or those you love.

 

But denial doesn’t help us, and neither does blaming the sufferer for their illness; though it makes sense to take care of our bodies, a healthy lifestyle is no guarantee against these issues.  And if you talk to the people in your life who suffer from chronic pain (you probably know more of them than you think), high on their list of challenges are the two attitudes I just named: denial and blame.  It’s hard to deal with medical conditions that can leave even doctors stumped, to know that these illnesses will never truly go away; harder still is the knowledge that family and friends think you are exaggerating, making up problems where there are none, looking for an excuse to be lazy, attention seeking, could fix your problem if you would only try (insert solution here)… The list goes on.

 

So THAT is the point of an awareness campaign: to educate the general population so that when someone says, “I have Ehlers Danlos Syndrome, ” the person they are talking to can listen with compassion rather than doubt, belief rather than skepticism. Such a simple little thing, but what a difference it can make.”
(Post written by Daphne Tatum)
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The graphic that inspired my sister’s post

– Selena