4 Real Ways Stigma Affects Us All

To be honest, I never really realized how much stigma affects so many of us until I became chronically ill.

"Who cares what others think? Just let it roll off."

That was pretty much my attitude about it...this despite the fact that my kids struggled with mental illness and I devoted years advocating for them and that I've faced prejudices about being a suicide attempt survivor and that I used to self-harm.

"Sure, it's annoying and sometimes hurts your feelings...but it's not like it's physically harmful."

WRONG.

I've learned better. Here are some ways stigmas can actually cause both physical and mental harm.

1. INADEQUATE TREATMENT.

Where to start with this one? Stigmas can lead to a person not receiving proper care...both from medical professionals who have absorbed and harbor the ideas that pain patients are drug seekers, that mental illnesses are not "real" illnesses, and that some disorders don't "actually exist," and from ourselves internalizing these ideas and being afraid to seek care for fear of being stigmatized or believing what we've heard--it's a weakness/character flaw, we can push through it/think ourselves happy/don't have a real problem/are imagining it/others have it worse.

Yes, this is so pervasive that this is a reality. And whether it's depression or another chronic illness, we can literally risk our health and our lives by not seeking treatment.

2. LACK OF REAL AWARENESS.

Number one leads into this so well. What does awareness matter? What does lack of awareness affect?
Well...everything.
When the facts of a disorder/illness are distorted or unknown, we face judgment from the uneducated, misinformed, and even ourselves, for one.

Lack of awareness affects research funding...which affects available treatment or whether doctors even know how to treat our illness (not every doctor is an expert;  far from it). Many medical students do not choose a specialty that isn't well funded research-wise. Before you judge them harshly for that, think of how hard it would be to spend years of your life not being able to actually help do more than a drop in the bucket for your patients--not to be able to offer hope for a cure or even a treatment that will make a noticeable difference. I've been lucky enough to have some doctors this truly bothers and who have confided that it IS discouraging for them as well as for their patients.

3. DISCRIMINATION and RECRIMINATION.

This is alive and well; although we as a society have become more accepting and accessible, we also have a lot of misconceptions about what is a "real" disability...and many have no qualms about holding forth on it to those that don't fit their ideas of it.

A friend of mine came under attack on her chronic migraine blog recently from a gentleman (I use the term loosely) who had these choice comments:

"He said on an image that said 'Pain doesn't go away, you just make room for it'...Get off your phat ass an live with it, just like everyone else!'

On an article about depression... 'There you have it, it's psychological. Now go see a good therapist and get back to work, you shirking POS.'

On an image that said 'My pain is invisible but I am not': cry me an 'effin river you whiney douchebag.'

On image that said 'stuck between Hell and Hope.' : 'You want to know what hell is? It's listening to you vapid brainless bloggers run on about your "pain" and every little ache you have. Don't eat like a pig, eat healthily, do some freakin' exercises, and then get a job and pay back this country for all the down-time you've gotten and sucking off the workmen's compensation, SSI and SSDI funding. Parasites!'

See the full post on Brainless Blogger here.

Many of us with chronic health issues have had these sort of comments fired at us, even from some family and "friends." Some are more subtle, some are outright derision. On top of health issues and the guilt we already feel, these kind of remarks can be horribly painful...and the fact is, many people truly believe them, especially when one's disease is "invisible."

These are kinds of people who vote to cut welfare and disability assistance or make them harder to qualify for on the rationalization that anyone who doesn't "look sick" is a scammer or leaching tax dollars from those who "really need it" and are "legitimately disabled." The sad part is that some of them are disabled themselves and judge others on whether they're "as badly off."

4. INTERNALIZING STIGMA.

This is a big one and ties into lack of awareness and not practicing self care.
It exacerbates the depression, anxiety, and low self esteem that often goes hand in hand with chronic illnesses, as well as perpetuating the feeling that we shouldn't talk about it.
If your chronic illness(es) are mental health disorder(s), this is really pervasive and can be extremely detrimental.

What can we do about stigmas?

Sometimes nothing...some people will feel this way no matter how much we attempt to educate and sway them, and that's the hard part that can discourage us.
Sometimes it's just more self productive to walk away from those toxic people who damage us and try to make us feel at fault.

But awareness is the single most effective way to combat stigma, and those who the message we spread reaches are the the ones who matter most. Don't waste time on toxic people...but don't let them stop you from advocating for yourself.

And please, don't let them stop you from taking care of you.

About Me

Introductions are always the hardest when you write them about yourself--how do you sum up yourself without sounding either pretentious, self-deprecating, or boring? 

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 2 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.