“When you feel like giving up, remember why you held on for so long in the first place.” – Unknown
So a part of me feels a real sadness for the need to write these types of posts, mostly because I have other pending work in progress, (not to mention my dissertation) but I wrote this earlier this week, thinking that perhaps my dissertation “writers block” can be cured when writing on the potential reason for the ‘block’…. And it was consoling and productive… so I’m sharing this here and now…
Because as someone who has been struggling and reaching out for help for a long time, and failing to find it, writing has been one of the only successful ways I’ve been able to cope with the pain…
A few weeks ago, I came across this episode from The Patriot Act on YouTube: Hasan Minhaj taking on the mental health crisis in America. Specifically highlighting the challenges emerging from our current health care system and health insurance providers… Here is the link for the entire episode on Youtube: https://www.youtube.com/watch?v=1tEuU_1ZGSY&t=41s
Further, on the Daily show, recently there was a segment that shared the experience of mental illness in the Black community, the cultural Stigma, the “religion equation,” and the lack of access to affordable and available health care for African Americans … Arguably these challenges extend to ALL people of color (POC) in America. Here is the daily show episode: https://www.youtube.com/watch?v=A5qZv9RgX6k&t=4s
Please watch these clips if you haven’t already. I’m glad these issues are becoming more mainstream, but there is still a lot of work to do to fix the problem.
Minhaj’s episode revealed a fundamental fact about the Mental Health care in America: it’s really really hard to find the right help.
The Daily show episode revealed the fundamental barrier of “whiteness” in the mental health care crisis in America. For minorities, it is especially difficult to search and find the proper health care. We have limited services, resources, that can address the challenges POC face, and the stigma prevents access and care within the POC communities. Sadly, there is a high demand for good mental health care for POC, and a very low supply of it.
The intersection between mental health and identity, specifically for POC is a core theme of my blog, speaking from my personal journey. For me this realization that it is a challenge across the board and not just within my own journey, has been a little consoling, further disappointing, frightening, and empowering at the same time. It is always helpful to know that the challenge is beyond you, and the blame and accountability for your health isn’t just on you in the end. Even though, ultimately something in the air always reminds you, directly and indirectly, that you are alone in your pain and suffering and you are to blame for not being able to fix it.
But when “culture” tells us to sweep it under the rug, when religion tells us to ‘pray to God and everything will be okay,’ and when the mental health care system “shoes us away” when we finally get the courage to reach out for help … telling us that they don’t have space, or they can’t help us because we can’t afford the care or they don’t take our insurance, or the current available care isn’t right for YOU, …then what can we do?
I started this sort of “system of self-help” because of this very challenge I was and continue to be facing. I haven’t been able to consistently develop or solidify it, but whatever I have been doing, has me coping for the time being…
I would offer the suggestion to refrain from the scrutiny of someone if they tweet or write on social forums, about their suffering or pain. It is an outlet of expression for some, a cry for help for others, often because people naturally cannot suffer alone and struggle in silence, as much as we are forced to in our social or professional domains. In this case, it is the silence that we need to fear. Especially for those who don’t have a support network or (in my case) who are too proud to place “burden” on support networks, (not that this is the right way to be). Posting in public social networks may not help in the long term, and may have been socially and professionally “risky,” but in some very dark moments in the past, I have been reminded by people in my network in different ways, that my life may be valuable. But sometimes that isn’t enough.
I’m not sure if I have limited my expression of my struggles on social networks because of the backlash I faced early on, the growth in character, or the recognition of potential stigma among professional contacts, or just not feeling it is worth my time anymore, especially at this stage with my doctorate studies. I am not sure if I’m up to date with how the culture has changed on this, but over the years more and more people have “come out.” From what I see, there are many who do still post regularly about their pain and we must remember to respond to it compassionately, and be wary of the significant danger of the “online bystander effect.”
These days, a stranger’s smile when coming out of a long day at the library, warms my heart so much, and it sometimes makes me cry. I try to stay away from the Hallmark commercials. 😉
Compassion and kindness make a huge difference for a person’s life in ways we won’t ever know.
The desire to be better is admittedly desperate. How long can someone keep living with constant emotional, mental, and physical pain on a daily basis without being able address it or get the help they need? I’m in my mid-30s now…when I was 17, the first time I realized that there could possibly be something that can explain the suffering I’ve had, I never thought at that time, that one day I would be 35 and still be suffering with the SAME pain and even more. At the time, I thought… now that I know I have depression, it will be fixed. I can fix this somehow. But I was hopeful for an immediate fix. Not recognizing that an element of that was potentially incurable. That this could be a lifetime struggle. I never thought my entire adult life, the core years of my youth, I would continue to be in such pain.
And how does it feel to reach out, again and again, to recognize and admit you need some help, literally putting your hand out… and having it slapped away, over and over again? …
In one case, back in 2016, I had been with a particular Psychiatrist for 4 years. I decided to give medication a try. And for 4 years, I was taking the wrong ones, even as I was primarily diagnosed with OCD. They were not OCD medications. In Spring 2016, I stopped taking those meds, cold turkey, and stopped seeing that Psychiatrist. In one way, I was free from what I felt was an imprisonment. In another way, it was a big blow to my path to recovery and my faith in mental healthcare. In that final meeting, I told this person that I have been asking her for several weeks to change my medication to ones that would help me with my OCD, which they had diagnosed me 4 years ago. With nothing improving, I finally pleaded to give it a try… Years into seeing her, she tells me she doesn’t know how to help me, but I was desperate for that situation to work as having to tell my story over and over again to different providers was exhausting… After I finally asked her to change the medications, every time I would see her, she would respond with “well you are always hesitant to change medications…” Here I am begging her to please prescribe me with the right medication, and her response was this instead. In the last conversation, she once again blamed me for not being open to medication. And of course, it was my fault she wasn’t monitoring me closely. It was my fault I didn’t do my research on the right medications. My impression was that she should be sued for malpractice, but I’m no expert. After that 4-year relationship, I gave up. But realized I had to try again more recently, particularly after returning from my dissertation fieldwork in Pakistan… Attempt after attempt, people tell me they are not taking patients, they are not giving me time, I sit for a few weeks with them, then the provider moves, or they have to make changes.. they tell me they will give me resources and information and then tell me later that person is unavailable to provide me the information… They tell me to wait for three months for an appointment to see a Psychiatrist located 2 hours away from here and then over time, I just say forget it. Just finding the courage to get help is challenging. And sometimes it’s the ineptitude and incompetency evident within the Mental healthcare that needs to be addressed….
If you found the right help for your mental health needs, you have a privilege that not many people have. Whether you can afford it, or have access to it, or have the insurance, or can find therapists that can diagnose you properly or whatever. Good, proper mental health care is for the privileged or lucky… There are layers and layers and layers and layers and layers of barriers for getting the right help.
We are then told to reflect on it ourselves, be self-aware, and don’t place blame on anything but ourselves. Basically, add fuel to the shame. Ostracize us, discriminate against us silently, for not doing enough to “help ourselves.” To say that the “system” has failed to help me over and over again is then not taking accountability for my own health… I am accountable, but really, am I, if I’ve been fighting like crazy to get better, to hang on, to keep breathing, if I have tried and sought help, and could not be helped?
I can’t express how numbing and paralyzing it is, that attempt after attempt after attempt to try to find consistent help, has failed over and over again.
And with more efforts of ‘self-help’ and educating myself, often feeling enlightened and empowered for change, and getting the appropriate clinical diagnoses in the past, I’ve been able to specify what’s wrong and know precisely how it can be fixed, with the painfully brutal truth revealed to me after attempting it on my own: that I simply cannot do it on my own!….and at the same time, cannot find anyone willing to help. This is the tragedy in my story. What really hurts is knowing that this could be (and probably is) the story for many others.
Finishing my PhD will be an amazing feeling obviously, a huge burden lifted off my chest, I might and will be very happy, but it won’t end my illness. The book manuscript, future publications and scholarship, and stable employment, would be the new journey, a new chapter… and perhaps some time for continuing that unfinished novel, and perhaps fulfilling the promise to my parents to talk to those “potential suitors” :/ (which is another layer of pressure, when you have used your PHD pursuit to escape from that)…. But the pain is much deeper than this… I won’t be cured by finishing my PhD and giving my soul to the “institution of marriage.”
I have written in the past, before going into my 30s, that I don’t want to live my 30s the way I lived my 20s and teens….. Now I am saying I just don’t want to live the remaining years of my “youth” fighting to become ‘unbroken’ within this ‘broken’ system. But perhaps that’s the unfortunate, tragic reality for many.
It will take time to fix this. It will take sacrifice. It will take courage for many of us to take any potential risks and speak our truths, so that generations after us will not have the struggle the way we have. We must continue the important conversation to address the stigma at the very root and core of every layer in society, from our familial networks, in our schools, at our jobs, in our cultural organizations, our religious organizations…and even especially deep in the mental health care system that is supposed to help and not make things worse.
Our livelihoods depend on finding a permanent cure to the inherent Stigma at every layer in society.
I hope we come to understand the importance of a COLLECTIVE EFFORT in destroying mental health stigma in our communities and networks, once and for all.
With peace, love, warmth, and blessings,
Your Elsa
Warrior KQueen
“The function of freedom is to free someone else.” – Toni Morrison
“There is no greater agony than bearing an untold story inside you.” – Maya Angelou
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