On this 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.
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.
“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)
We’re coming up on one of my favorite months- Migraine and Headache Disorder Awareness Month!
I’ll be sharing LOTS of awareness info intended to reach migraineurs and non migraineurs both, as well as awareness about other headache disorders.
Naturally since chronic migraine is my personal monster, I’ll focus on it, but if you have a headache disorder you’d like featured here or on my Facebook page, please let me know! I don’t want to leave anyone out–I know too well how that feels.
Also, a great all-inclusive page to follow (this month and all the time) is BrainWreck Rebels – they are excellent support and information for anyone with any type of headache disorder.
I truly wish more people understood this about chronic illness:
We are not drug seekers.
We’re not after pain killers–we’re after treatment that will reduce pain.
Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.
The thing is, many of the meds we take have side effects.
I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.
Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. Stops the attack/pain, but knocks you out/leaves you in a fog. Impairs your mental or cognitive function- memory, ability to concentrate, etc.
And guys, I’m 100% serious when I say sometimes these are only the MILDLY annoying side effects.
I’m not even counting the “oh my god, what is this doing to my body in the long run” concerns. Or the fact that they don’t always work 100% or at all. Or realizing that there is no one magic treatment or doctor that will give us our lives back. Or that many treatments are expensive or limited by insurance.
And I know- you’re thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.
And there’s the rub.
Because when you’re sick every day, you learn that you have to weigh the evils sometimes.
“Am I willing to deal with ___ so I can not hurt today?”
“Am I willing to deal with pain, etc., so I don’t have to take this one?”
“Can I function through the day if I don’t take this?”
And the big one: “Is feeling better worth this?”
Sometimes it is…and sometimes it isn’t.
Sometimes I skip meds so I can function, and sometimes I can’t function without them.
I can be both thrilled to have them and loathe them at the same time.
And I’m not alone.
We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for.
Why should we be treated as if we’re wrong to want to feel better for a while?
Wouldn’t any of you do the same?
Hard question to answer.
Most of us are still trying to answer it every day.
Being chronically ill doesn’t necessarily make us kinder or more understanding of others, but it can if we let ourselves take that lesson from it.
For that to take root, it has to be cultivated. And cultivated. And cultivated.
How does one cultivate compassion? By first being honest with ourselves….even when it’s not pretty.
1. I sometimes get jealous of my friends.
Healthy ones because they’re healthy, and ones who aren’t healthy that have pain free days because they have pain free days.
2. I feel immediate guilt for thinking they are somehow luckier than me, because logically and emotionally I know better than that.
3. I give myself a mental kick in the butt for such a knee-jerk stupid feeling, because one of the main reasons I advocate for awareness is that I hope it may help others from ending up like me.
4. I try my hardest to never show my friends when I feel this way, but I’m often worried I’ll fail at it.
5. This is a hard thing to admit and I feel like a jerk.
6. This doesn’t mean I’m not happy for them when they share good news or have a good life, and definitely not that I want them to stop sharing either good or bad things with me. I still want to them to not feel guilty about confiding in me.
7. I think many who are chronically ill can relate. And that they hate to be able to relate.
8. I think a lot of us are afraid to admit the less pretty side of what being constantly physically miserable can make us feel.
9. I think we’re afraid of being seen in a negative light, especially since we feel the sting of stigma already.
10. Being honest is important, especially to ourselves.
What do we do with this kind of honesty and self discovery?
We work to counter it.
Sometimes we fail, sometimes we succeed. And whichever it is today, we give ourselves the compassion and the room to be human and fallible.
And then we pass that same compassion and understanding along to others.
I know this may be an unpopular post with many migraineurs, but I’ve got to say it:
I don’t like the “not just a headache” thing. In fact, it drives me nuts. Why?
Because it’s incorrect, and it still basically says that “migraine = headache plus some other things.”
Migraine is not a “headache + some other things.”
Migraine = NOT a headache at all.
Migraine = complicated neurological genetic disorder with a plethora of possible symptoms…one of which MAY or may not be pain.
Not all migraineurs have head pain as a symptom.
Some migraineurs have abdominal pain instead of head pain.
And no matter where you fall on the symptomatic spectrum, migraine attacks can be disabling, with or without pain.
I really have to wonder how much we ourselves add to misconceptions and stigma by embracing the “not JUST a headache” movement. Why of all things did this become our rallying cry? Was this how we thought it would be more relatable to non migraineurs?
Because if so, I think it’s pretty much proven otherwise.
And worse, not only does it not make it easier for others to relate, it excludes many migraineurs and contributes to lack of knowledge and misconceptions, even within the migraine community.
Why are we using a phrase that limits migraine to a “headache + some other things” when we already feel we’re not taken seriously as having a real illness?
“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.
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.
With these and other misconceptions about BPD, is it any wonder many give up hope or lack support?
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.
May is a favorite advocacy month for me: Mental Health Awareness Month.
If you’ve read any of my previous blog posts, you’ll know that mental health is an important subject for me, both in conjunction with chronic illness and on its own.
If you think I stress mental health awareness as it is, buckle up, because I’m going to really focus on it this month.
Mental illness has impacted my life in many areas; both of my birth kids have mental disorders, my 2 adopted kids have both had some issues with depression and trauma, I have depression and anxiety, and I have friends who live with mental illness as well. Currently, the hashtag #1in4 is trending, because 1 in 4 people have mental health issues. Chances are that if you are not the 1 in 4, you know someone who is.
Although we have evolved into a society that is more accepting of mental illness, stigma is alive and well, even within the mental health community. We have more awareness and openness about depression, anxiety, and bipolar disorder, but many other mental illnesses continue to be bypassed or misunderstood.
This month I’ll be focusing on the mental health issues that have affected my life.
Happy Mental Health Awareness Month and spread awareness, not stigma!