Community Voices

Transgender Day of Visibility

<p>Transgender Day of Visibility</p>
Community Voices

New Kinds of Grief

My therapist and my partner and I have been chatting a lot recently about grief. Loss of family, loss of self, loss of dreams, loss of future, of identity. Lots of things change with disability, and I’m still going through all of the emotions about them.

One that I haven’t gotten the nerve to talk to any of them about yet is one that I don’t think they’ll understand; the loss of Privacy.

My personal privacy is something I’ve held so tightly to myself for more than 20 years of my life, and now there is nothing I can do to protect it. It’s being stolen by a disease that most doctors don’t even know exists.

I have been a private person my whole life. I lived a loud, vivacious public life, so people would assume they knew enough about me. Even my parents didn’t know much about me, past what I lived publicly, because I’ve never wanted people to. Hell, my sexuality and my three 7-year life partners isn’t something 99% of the people in my life are privy to.

Because of my disability, I am no longer allowed to live alone. I now wear a fall monitor and GPS device at all times. There are three wifi-accessibile security cameras in my house so someone can make sure that I’m physically safe at all times. We had to remove the door to my bathroom so we can get my wheelchair in and out of it. I sometimes have to be dressed, toileted, and moved by my family or caregivers. Doctors, ER Techs, and EMTs have all seen, heard, and felt more of me than any human being should ever have to. Even the helper we had to hire for me to stay on top of housekeeping has access to private places in my life.

But it’s so much more than that. So many medical types know so many intimate details of my life now. How I’m feeling, how my brain is working, what my BM schedule is, how my sex life is, how long it’s been since I took a shower. There is literally nothing in my life that is personal or sacred from my care team, because whether I like it or not, the details are important for them to be able to fill their roles correctly.

The worst of it, though, is the well-meaning strangers. I live in a small town. My family is well-known, with VERY wide social circles. So many people see me out in public, see me with one of my caregivers or friends (especially when I’m using a mobility aid) and come up to ask me how I’m doing, what’s going on, why am I using that. They ask detailed questions about my diagnosis, or make kind-hearted assumptions about my prognosis that required detailed answers to deal with.

Even strangers do it! I bought a lift chair this weekend, and the salesman assumed it was for my (older) partner, and I had to explain to him what was wrong with me so he would STOP badgering me about being too young to need something like that.

I’m am still grieving the loss of something that’s so important to me. I don’t know how to talk to people about it. How do you explain that to someone who doesn’t already understand?


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Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"

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Any accomplishments or special event happen?
Had any issues you would like to talk about?
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More Insurance and Referral Denials

The medical system is overwhelmed. I understand that whatever is wrong with me does not put me in imminent danger. If it hasn't killed me in the last two years, it's probably not going to kill me in two months. It's only taking away my quality of life. It's just pain, and seizures, and loss of function, loss of independence, loss of work, of friends, of hobbies, of relationships. While those things suck, they're not fatal.

But for someone in my position? They might be deadly.

For someone who has been passively suicidal since age 13? For someone with active attempts? For someone with depression, anxiety, Bipolar Disorder, schizophrenia, trauma?

Whatever is wrong with me is eating away the life I've fought with my own demons for. Everything I've worked for, promised myself, rewarded myself with, is being taken from me. By a disease that doctors can't identify. By insurance that says I don't deserve independence. By specialists with 6 month wait lists. By disability systems who say I'm not sick enough to warrant help.

And the worst part of all this? It is unsafe for me to tell any of them that their dismissal is life-threatening.

If I do, they may decide that I am a danger to myself. They'll put me in a locked ward, take away my meds and mobility devices, sequester me from my family. All in the name of my own well-being. After all, it's only OK to not be OK as long as there's nothing more wrong with you than a little garden-variety case of the blues.

There is an important line about patients in the Hippocratic Oath: "I will do no harm or injustice to them."

HARM: noun

\ ˈhärm \

1: physical or mental damage : INJURY

Lately, I've been wondering how many doctors are caught in a system that makes it easy to forget that oath, and the definition of this word. It's so easy to get swallowed by a bureaucracy and numbed to patients; to think that if they are not giving someone the wrong medication, amputating the wrong limb, ignoring the appendicitis, they are doing their job. After all, telling a patient to wait six months is hardly the same thing as child neglect. Medical trauma comes from active care.

Except when it doesn't. Except when it comes from dismissal. Or gaslighting. From test refusals, from referral refusals, from overscheduled calendars, from misdiagnosis. From 2 years with no answers. From a 9 month wait for psych meds. From being 35 with a history of mental illness dealing a total loss of quality of life, and a medical system that is only concerned with your health if you meet the specific criteria of "in clear and present danger."

I can't fix a broken system. I can't even have this conversation with my doctor, because I may find myself admitted someplace I'd prefer to never have to go again. But I hope someone in the medical field gets a hold of this. I hope it inspires you to advocate for patients. I hope it gives you strength to stand against bad practice.

I hope.


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