Most of the time, I write about what it’s like to be chronically ill. It’s easy for me to write about being chronically ill. In 2014, I was diagnosed with hemiplegic migraines, which has since turned into neuropathies, gastroparesis, severe fibromyalgia, a balance disorder, and possibly genetic disorders. I know chronically ill all too well.
But really, my first big journey with illness started in 2008. It started with depression and panic attacks. It morphed into mania. It continued to grow, to rage, until I ultimately ended up profoundly depressed and having suicidal ideations in 2010 and was forced into the hospital. It started with a diagnosis of bipolar 1 and a host of anxiety disorders.
And really, what I learned, is that there is no feeling worse than wanting to die. Being so depressed that you literally want to end your life, and maybe even trying to. That is the lowest. That is lowest I have ever been, and everything compared to that I can handle.
Once you have weighed the options between life and death and chosen death, the world changes. Your perspective changes. Death is no longer a Grim Reaper standing over your shoulder; it’s the voice in your head talking about your funeral and who would come and who would find you and should you write a note and what should you say. That is suicidal. That is the worst feeling in the world.
When I began my chronic illness journey in 2014, I struggled. I am still struggling. But in a lot of ways, my mental illness prepared me for my chronic illness.
I’m in constant high levels of pain. I’m at the bottom tonight. And yet, this bottom is nothing compared to the bottom of depression.
When my body gives out on me, I can be mad at it. I can see test results and see where my issues are. I can feel when my left side is giving out on me. I can feel when my balance is off.
But when you are mentally ill, the world is warped. There is no reality. At least no real reality. Your brain lies to you; it poisons you. The thoughts you have are not yours, but your mental illness’. It overwhelms you, pounding you over and over like the giant waves in Hawaii.
Yet, people have been so much more understanding of my physical disabilities. When I was diagnosed with severe migraines, which then lead down the path to many other diagnoses, people understood that. They could see the changes in my body, hear the stutter when I spoke. They reached out to me for updates and offered sincere condolences on my new found illnesses.
They didn’t understand when I was manic. They didn’t understand when I was suicidal. We barely spoke of it as a family. We still don’t speak of it.
Why is it that you can understand my migraines, but not my anxiety and mood disorder?
Where were you when I was going through the highs and lows of constant emotional instability?
It’s how we work. It’s how society works.
Mental illness is spoken about in hushed tones and deserted hallways. A visible physical illness may be simpler to understand, like a prosthetic or wheelchair. A mental or invisible illness, not so much. The world we live in has come a long way in destigmatizing mental illness in the last few recent years. NAMI has been huge in the promotion of awareness of mental illness and support for persons struggling with mental illness and their families. More celebrities are coming out and talking about their own experience with mental illness. It is becoming a safer place, but it is not yet safe.
So, why don’t I talk about it?
The short answer is: I don’t talk about it because it is not yet safe enough to discuss. The stigma around mental illness is still suffocating.
So. Much. Stigma.
I can talk about my physical and chronic illnesses all day long. But mental illness? Not so much.
For many of us, mental illness and chronic illness often go hand in hand.
Imagine being an able-bodied, healthy, active person and suddenly forced into a disabling illness. Imagine never getting to be healthy and struggling your whole life with a chronic illness. At some point, all of the chronically ill will suffer from periods of depression and anxiety. It happens to everyone who has a chronic illness.
With mental illness, there are often somatic complaints like pain. Persons with mental illness often suffer exhaustion, and anxiety can lead to physical symptoms of rapid heart rate and other nervous system reactions.
Chronic and mental illness are so finely intertwined, like delicate threads on a tapestry, that you can’t speak of one without speaking of the other. Chronic illness is easier to speak of for me, but mental illness still has that damned stigma, which really just comes from a lack of education and ignorance about what are serious medical conditions, not just a “weak mind.”
It’s even so much easier for me to write about my chronic illness than my mental illness. I am shy when it comes to my mental illness, but I openly discuss my chronic illness all the time. The stigma has even gotten to me. It has even penetrated my bubble and made me want to hide that side of me.
But, no, I will not hide.
I will not stay silent or invisible.
I am not a shadow.
I’m scared to do this.
I’m scared to put myself out there like this.
But the conversation has to be had. There has to be awareness and education. For everything. For every rare disease and every mental illness and every disability.
Let’s have it.
Let’s talk about the silent shame and judging the world puts on the mentally and chronically ill. The “you don’t look sick, so you must be fine” judging. The notes on cars parked in handicapped spaces. A presidential candidate mocking a reporter with a disability. The workplace, where you have no idea what you can say without fear of losing your job or ramifications. You might be thinking, where do we start?
And the first step is simple but crucial.
Being aware of the problem is a step. Being aware that you, whether consciously or subconsciously, are part of the problem is the first step. We all have some role to play in this ongoing debate. All of us, universally, all up and down the spectrum of humans.
That’s all I’m asking for right now. That’s the first step.
If you make yourself aware of the biases you may have, just acknowledge them and think about them for a second, and then maybe you can catch yourself the next time you think one.
If you fall into the disabled category like me, think about the role you play in it. The expectations we may sometimes have to our environment to adapt to us, but that’s not exactly how life works. I’m not saying that’s the case for you, but for me, I spent two years expecting my environment to adapt to me and my newfound illnesses, instead of adapting to my environment.
Think about sharing your story, raising awareness. The louder we are, the more they will listen. Everyone has a role to play in this thing we call life. Black Lives Matter, police brutality, women’s rights, war, the election, Invisible Illness Awareness Week, Mental Health Awareness Month… everything. They are all human issues. It’s not my issue or your issue; it’s our issue. It’s life.
Life. All of life. All of human life.
We all play a role, and we all have something to own up to.
I own up to being more open to talking about chronic illness than mental illness because I am more ashamed of my mental illness. Because I don’t want to be thought of as “that crazy girl” anymore. I had a classmate message me after about 10 years of not talking, and say to me after a few friendly exchanges, “So Cait, are you still crazy?”
I own up to all the feelings I have hurt and broken promises I have made due to both my mental and chronic illness.
I own up to finally giving into the depression after two years of fighting it off.
I own up to the fact that I have not been the best partner at times.
I own up to the fact that while I am disabled and female, I still have white privilege.
I own up to being one of those people with an invisible illness and a handicap placard, who one day, just might get a note on her windshield.
What do you have to own up to?
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