Migraine Can Be Deadly. (Yes, Really.)

On the last day of Mental Health Awareness Month, I'd like to highlight the importance of mental health in conjunction with chronic pain/ illness/migraine.

I can say that having found the migraine community shortly after this young woman's death, I was profoundly and deeply affected by Melissa's story.
Having progressed to daily chronic myself a relatively short time before, I was struggling to deal with the pain, the stigma, and still searching for answers that at the time didn't exist or weren't widely known.

I approached the 3 year mark of my daily chronic migraine existence with trepidation because of Melissa's story, wondering what might be the day I gave up hope...and although I passed it with some relief that I hadn't harmed myself, I WAS haunted by the "It could have been me" thoughts, as I did have frequent thoughts of suicide and even a plan on a few occasions.

I'm glad to say I got help for the crushing depression I felt then; although it's by no means a cure, it does help me cope exponentially better.

Many of us are still lost there, though.

During a livestream Q&A I did on Chronic Illness on The Mighty, I touched on the story of Melissa's loss and how it affected me although I'd never had the chance to know her, and included her in my reasons that I feel so strongly about stressing the importance and relation to mental health and chronic pain/illness.

She still is a large reason that I do this.
My others are the my own experiences, my family, and the countless others who are in the trenches fighting this battle at any given time.

Yes, migraine can kill. It kills through depression, though loss of hope, and through suicide.
Yet it still isn't seen as the monstrous disease that it is.

I want to help change that. For Melissa and for every one of us.

- Selena

"The migraine community is deeply shaken by this young woman’s suicide. Those who knew her are crushed by the loss of a vibrant, warm-hearted, loving person who was only 22. And I believe that those who didn’t are haunted by the niggling thought, “It could have been me.” Even the chronic migraineurs who haven’t seriously considered suicide know the feeling of not wanting to live like this anymore. It is not that we want to die, but that the daily struggle of chronic migraine feels like it is too much to bear and the light at the end of the tunnel often seems nonexistent."
(Quote from The Daily Headache)

Photo from BrainWreck Rebels Melissa Dryer Foundation

Mental Health Awareness Month: Spotlight on BPD (Borderline Personality Disorder)

IN MY LAST POST, I EXPLAINED THAT MENTAL HEALTH AWARENESS MONTH IS IMPORTANT TO ME. 

THIS POST HIGHLIGHTS ONE OF THE REASONS WHY.

***WARNING: IF YOU HAVE ATTEMPTED SUICIDE OR ARE A SUICIDE ATTEMPT SURVIVOR THE FOLLOWING POST MAY BE TRIGGERING***

Originally published on The Mighty, April 19, 2017

Today, I read a post that made me think about how the stigma of borderline personality disorder (BPD) can lead to its diagnosis becoming a self-fulfilling prophecy. This quote in particular really hit home:

“Talking semantics may seem oversensitive, but the rhetoric surrounding BPD has got to change. Stop painting us as delirious, insane, selfish, dramatic, manipulative, etc. We’re battling a cruel, ugly monster that most people won’t understand, and we need help just as much as anyone else living with mental illness.”

BPD is all too commonly seen as a hopeless diagnosis, even by many mental health professionals. For most of my daughter’s teen years, she was in and out of psychiatric hospitals, attempted suicide several times and self-harmed. She was in the juvenile justice system and abused drugs. She was diagnosed with bipolar disorder, but I was positive this was not what she had. My son has bipolar disorder, and while I’m fully aware it doesn’t present the same for everyone, the diagnosis didn’t seem to fit her symptoms.

I had started doing my own research into mental disorders when my son was diagnosed a few years before, and something I read was niggling at my brain. I looked up borderline personality disorder. The description fit her perfectly. Every trait was dead on.

My daughter and me (2016)

Her doctors refused to entertain the thought that it might be BPD. What did I know? I was only her mother, and they were licensed mental health professionals. I was met with condescension for the most part until she was 15, when a suicide attempt landed her in the hospital yet again and the doctor treating her had more concern for her welfare. He agreed that her behaviors and thought patterns absolutely fit the description of borderline personality disorder and suggested we find a therapist certified in cognitive behavioral therapy (CBT).

Still, we almost exclusively heard medication and therapy were “not likely to be terribly effective, so we hate to saddle someone with that diagnosis.” Her official diagnosis remained bipolar disorder, but it was added that she had borderline traits in the interest of getting help geared toward her needs.

But what we discovered repeatedly was that instead of her needs being met, the misconceptions and stigma of BPD often meant she was written off as a “hopeless case” by many. Some therapists and psychiatrists still hold this view, and their clients suffer for it, even to the extent of being given up on or not accepted as patients.

We had one nurse tell us to hang in there, that she had BPD but was finally doing better. The therapist we found was encouraging and wonderful. Only two people amid a sea of professionals were hopeful.

Why is BPD so stigmatized?

Some of the most widely known traits of BPD are often seen as character faults a person could “just change if they really wanted to.” Traits such as attention seeking, intense emotional reactions and manipulative behaviors. In a teenager, they’re often blown off as being “dramatic” or “acting out.”

It’s not that simple. BPD is a disorder, not a state of mind. Treatment can help a person mitigate and manage those traits, but one cannot just “decide not to be that way.”

I’ve frequently seen it said that treatment doesn’t help because those with BPD often don’t seek it or think they don’t need it. This idea is misleading because a number of people with other mental illnesses also don’t seek treatment, think they’re OK or think they don’t need it. Yet BPD is the disorder most commonly associated with this belief. BPD is too often treated as the “redheaded stepchild” of mental disorders, even among others who have mental health disorders.

(We do a lot of SELFIES in this family. I'm sure you can't tell, right?)

With these and other misconceptions about BPD, is it any wonder many give up hope or lack support?

The amount of negative information or misinformation about BPD and the lack of positive information on the internet is appalling, which inspired my now-adult daughter to write an encouraging article about parenting with BPD which was published on The Mighty.

BPD is not a hopeless diagnosis. My daughter may still have room for improvement (don’t we all?), but over the past five years, she’s made amazing strides. She stopped using drugs and has been sober for five years, she’s back in therapy, she’s maintaining well and she is a wonderful mother to my “grandspawn.” She’s reached out to encourage others with BPD via the article she published. I’m incredibly proud of her and all of she’s done and is doing for herself and her son.

BPD is not a hopeless diagnosis. The right therapy for an individual, a good doctor, perhaps medication for associated illnesses like depression, anxiety and a strong support network — these can make an invaluable difference for a person struggling with BPD.

And aren’t our loved ones and ourselves invaluable enough to deserve those things?

My daughter is living proof that BPD isn’t a hopeless diagnosis, as are many others. But a great many need hope. Let’s help spread that hope for them instead of stigma.

Mourning the Loss of an Advocate: Amy Bleuel

****WARNING--THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE ATTEMPT SURVIVOR.**** 

My heart has been heavy the past few days since the report of mental health advocate Amy Bleuel's death was released.

For those who don't know who Amy was, she pioneered a network of peer support via her non-profit organization, Project Semicolon, founded in 2013. Project Semicolon exploded into social media consciousness in 2015 when pictures of semicolon tattoos inspired by the Project took off and started spreading like wildfire, but I was a follower of the Project since 2014 when I came across a photo on Facebook dedicated to Semicolon Day:

(The above photo is from 2015, but the one I came across was the same or similar.)

Project Semicolon defines itself as "dedicated to presenting hope and love for those who are struggling with mental illness, suicide, addiction and self-injury", and "exists to encourage, love and inspire."^[8] While they are devoted to achieving lower suicide rates in the U.S. and worldwide, they do not themselves practice psychiatry, and the staff are not trained mental health professionals.^[4] Rather, they recommend contacting emergency hotlines (e.g. 9-1-1 or the National Suicide Prevention Lifeline) or seeking mental health professionals.^[9]

According to a report by the Centers for Disease Control and Prevention, suicide is the 10th leading cause of death in the United States. with 42,773 reported deaths in 2014.^{[10] (from Wikipedia)}

I can't stress enough how important the Project was to me as someone who has a past history of self harm, who has struggled with depression and anxiety, and as a suicide attempt survivor and the mother of a suicide attempt survivor.
Amy made it okay to talk about these things more openly for so many and touched so many lives with a small punctuation mark. By nature, those who self harm tend to hide what they do. There are differing reasons and methods of self harm that I won't go into here, but the nature of the stigma has prevented many from seeking help or having hope for recovery. Suicide attempts often have similar stigmas attached, and many survivors, suicide loss survivors, or those considering suicide tend to feel alone even in the mental health community. Amy gave us a place there.

As an advocate for mental health as well as chronic illness, I admired and continue to admire Amy and her message of inclusion and support.

Amy was a suicide attempt survivor who struggled with depression and trauma PTSD herself, and whose father died by suicide. As many know, survived suicide attempts increase the risk of death by suicide in an individual. Yesterday, it was indeed confirmed that Amy died by suicide.

People tend to think mental health advocates have the answers and have conquered, but we're really still in the battle with them.

We're navigating the same waters, but don't necessarily have a lighthouse in sight, a life jacket, or even know how to swim in uncharted waters...we just know we're called to help others.
Sometimes in helping others, our own self care takes a backseat; sometimes because it's easier to focus others' problems, sometimes because we get caught up in what we do, and other times because we just don't see that we have that same safety net we try to be.

When an advocate dies by suicide, people wonder what will happen to those they reached out to.
Will they feel "cheated" or abandoned?
Will they lose hope and give up?

Such a loss does not invalidate the message or their work. It makes it more important.

Rest in peace, Amy Bleuel. Your story is still not over, and neither is your legacy.

~ Selena Marie Wilson ~