By Alisha –
So I was going to pick up where I left off last time, at the humid East Coast of KwaZulu-Natal, South Africa and start taking us on a migraine-on-board trip “around” some of the world.
However, the more I write (for Migraine Mantras, myself, and other organizations and platforms) the more I realize the STIGMA around migraine is consuming and far too real to continue sharing that story quite yet.
It creeps in mid-migraine and spirals in my mind why so many people just don’t “get it;” it is evident in how people respond when a migraineur mentions their migraine or any accompanying symptoms, pain or comorbidities, that the stigma is still a HUGE CONCERN.
This saddens me. It rips my heart open in ways I know I shouldn’t let it and maybe that is my anxiety and other mental illnesses coming into play, but a significant part is my inner empath and activist, that part of me that cares so deeply, as so many people do, yet I notice all the people who really couldn’t give a second thought to a person in such severe pain.
The Stigma is Strong
The stigma is so prevalent, even though there are more people than ever raising awareness about migraine, headache disorders, and chronic migraine, that I just couldn’t share the beautiful story I had put together and intended to publish in place of this one. Instead, I think an authentic dose of truth, both my truth and some facts are what we need instead.
And, if you are looking for pretty, then this isn’t it. This is about telling the TRUTH behind the “healing,” to the pain of migraine, the dark, lonely nights, the tears shed. The blood shed. The attempts at ending it all.
From personal experience, I have seen that many don’t want to know, hear and see the “ugly” side of pain, yet they happily (or ignorantly) make comments and take actions, that whether intentionally or not, contribute to the pain the migraineur or any other person suffering from mental or invisible illness is already dealing with.
Writing about something so personal, emotional and close to home is shedding skin and layers of myself. It is about letting go.
For me, I get to let go of past pain, past experiences, and I hope for other migraineurs it can have the same cathartic effects, because there is life beyond migraine, even if the throbbing in your mind is saying something else.
Just to note, I still have chronic migraines and daily pain, but I know the value and beauty of life. I can admit that suicide is a real thought and concern with migraine and I can also acknowledge that there are ways to pull myself out of that dark space.
How the stigma contributes to more pain
The stigma is so strong in the medical world that my doctors (in South Africa) let me walk around with multiple back injuries for years. When the doctor who was finally willing to LISTEN and diagnose me did just that, he shared that the extent of my injuries and pain were comparable to that of a patient with bone cancer.
I was walking around with this pain, going from doctor appointment to doctor appointment, begging them to examine my back, crying from the pain of walking, sitting, urinating. Every movement. I cried in those appointments too.
Which, as a migraineur, you are “not supposed to show signs of emotional distress,” you are not “allowed to let your anxiety show.” However, that wasn’t anxiety; it was REAL PAIN.
I am told so often by doctors how I am “not to behave” as a migraineur. That, somehow, since I have all this debilitating pain, I am supposed to be made of steel with no human emotions.
My severe back injuries and the lingering pain could have been avoided if only one doctor gave me the referral to get an X-ray, but because I was a patient with migraine and mental illness, this “extreme back pain” was conveyed to me for years as “it’s just stress.”
The real deal behind migraines
I’ve said this before, and I will say it again. Migraine is not just a headache, the pounding, throbbing “head pain” is only ONE symptom of a complex neurological disease that affects the WHOLE BODY.
Please refer to the Comparative Pain Chart in my previous post and especially study Pain Levels 7 and up — this is the pain most migraineurs experience during a migraine attack.
These are not my words; they are just some facts taken from research.
Please know that:
❤ Patients can be very disabled due to Chronic Migraine. As reported in the World Health Organisation (WHO) Bulletin, a day lived with severe migraine is as disabling or more so as a day lived with dementia, active psychosis, paraplegia or blindness.
❤ Depression is three times more common in people with migraine or severe headaches than in healthy individuals.
❤ Migraine causes more lost years of healthy life in the US than do MS, epilepsy, ovarian cancer, and tuberculosis combined.
❤ More than 90% of sufferers are unable to work or function normally during their migraine.
❤ Migraine is the least publicly funded of all neurological illnesses relative to its economic impact.
❤ Worldwide, just four hours are committed to headache disorders in formal undergraduate medical training, and 10 hours in specialist training.
❤ Migraine is more prevalent than diabetes, epilepsy and asthma combined.
❤ In the US, the National Institute of Health gave over $24 million to headache research, over $200 million to asthma research, and over $1.1 billion to diabetes research and yet, there are more headache patients in the country than there are diabetics and asthmatics combined.
Migraine, Comorbidities, and Suicide
You see, when I start touching on this stigma in a conversation people get very uncomfortable. I want to share one piece of insight with those people:
You are going to be a lot more uncomfortable when you lose someone who has migraine, or any other invisible or mental illness, to suicide than you would be to discuss the topic of their pain with them.
When someone without “understanding” makes off-hand comments or does things, even unintentionally, that affects the chronically ill person, that puts the chronically ill person in a challenging situation.
Now where the situation digs deeper is, that migraine likes comorbidities.
“The experience of migraines is further complicated by comorbid medical and psychological disorders. Psychological disorders, especially depression and anxiety, have been found to be prevalent among migraineurs.2 Chronic pain, stroke, gastrointestinal disorders, cardiovascular disease, and other medical conditions have also been found to be more prevalent in migraineurs compared with the general population.” – Journal of Pain, Department of Psychiatry, University of Massachusetts Medical School
That means, the chances of someone with migraine or chronic migraine, like myself, are pretty good to have depression or anxiety. I have both. More than that.
There is a beauty to it though, such as the natural ways I can manage it. Not easy. Natural. Such as stepping outside and connecting with nature. Or enjoying the comfort of our fur babies. Or talking to my husband or chasing waterfalls or driving around listening to music.
However, the other side of the story is that with the debilitating pain of migraine and the added comorbidities of mental illness, the spiral can get pretty dark pretty quickly.
Migraine, Mental Illness & Suicide: Facing the Facts
- Suicide attempts seem to be more frequent in patients suffering from migraine than in the general population, especially in females and in patients having MA. [Migraine with Aura]
- The pain associated with headache is itself a potential independent risk factor for suicide, particularly among those with chronic headache or multiple sources of coexisting pain.
- Psychiatric comorbidity complicates the management of patients with headache, and the prognosis for headache treatment is poor.
- Migraine and depression independently exert a significant negative influence on quality of life.
- In one study, the frequencies of high suicide risk were 50% for subjects with migraine with aura, 21%, migraine without aura and 7.5% without migraine.
- In studied cohorts of depressed adolescents, 35–50% attempted suicide; furthermore, 5–10% of these adolescents diagnosed with a major depressive disorder died of suicide within 15 years.
- There are an estimated 8–25 attempted suicides for each teen suicide death and four of five teens who attempt suicide have given clear warnings.
The connection between Migraine and Suicide
This connection is real, and that is quite evident. I (and other migraineurs) don’t need studies or facts to tell you that. I am grateful and fortunate to say, I am living proof.
There have been so many times mid-migraine where I have begged for it all to just end. And begging isn’t where it stops.
But it can be.
I understand how mid-migraine or during one of the Stages of Migraine (which I’ll discuss next time) it feels overwhelming.
For me, having all these overwhelming and painful symptoms, throwing my body and mind all over the place like a rag doll often feels like it is burying me alive.
And I beg for it to end again. I am pleading for the attack and the burying alive feeling to end, but if you know migraine, the attack can spiral, and the pain can get severe and last for days.
I just need one of those things to end, just a little less pain so that I can move through it.
And that is what I focus on. My mantra: “This too shall pass.” And then I find my hope and light and I fight. I see the reasons I do continue to live. I look outside of the pain, the mental turmoil, and look at the beauty of this Universe and all the people it is about, the bigger picture, because my life isn’t just about me, and that is how I am pulled from my dark moments.
Suicide, because we need to talk about it
And please don’t misunderstand me, I do not romanticize suicide. I flinch at the thought and smell of blood mixing with water. I do not write or share this for entertainment. I share this with the hope to RAISE AWARENESS.
I don’t write to be insensitive. I have lost enough people.
I write this because migraineurs, chronic pain warriors, invisible illness fighters, mental illness fighters — we are all warriors. And it’s time for the story to change. It’s time for it to be okay to share that “hey, I AM NOT OKAY TODAY,” and for that to be accepted and instead of receiving a response that sends the warrior down a wormhole of triggers, they hear something uplifts them instead.
That response is for family and friends to determine.
Let’s change the talk
It’s time we take a kinder approach and learn to understand each other better. To be the guiding light instead of the darkness. So my challenge to you is, as a migraineur or someone who knows someone with migraines, a headache disorder or mental illness, the next time that person is trying to tell you about their pain and how certain things affect them, try to be more compassionate and understanding, even if you cannot relate at all.
If you have no knowledge of what they are talking about, tune in and listen. Write it down on the notes app on your phone afterwards and research it for just an hour. However, please, don’t make a comment such as “I get headaches too” when your “headaches” are relieved by an Advil or “you don’t look like you have a migraine” or “all you need is a good night’s rest.”
I can give a million examples of what NOT to say, however, I would rather advise that you say, “thank you for sharing your truth” or something real and authentic, you don’t need to give them life advice or a cure. These type of comments often make the pain we bear only worse.
Life is not black and white. There is so much beauty in between, and all the person telling you about their migraine, chronic pain or mental illness wants, is to be recognized for who they are. Nothing more. Nothing less. A little compassion. A little understanding. That will heal the world much faster than any “miracle cure” ever can.
If you need to talk to someone, please consider these resources:
- In the US, if you are in crisis or need someone to talk to, call the Samaritans branch in your area or 1 (800) 273-TALK.
- For mental health problems in the UK, Samaritans can be contacted on 116 123, or visit Mind’s website.
- For anxiety and depression support in South Africa, visit The South African Depression and Anxiety Group’s website for hotline numbers.
- For support in Australia, use the service Lifeline – 13 11 14.
- Hotlines in other countries can be found here