disability

To Share or Not To Share

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“How are you doing today, Hayden?”

What I want to say:
How am I doing?! How the f*ck do you think I’m doing?! I’m depressed and in pain. I’m sick of constant treatments. I finish IV fluids, then I have to take my oral liquid cromolyn, then my cromolyn nebulizer treatment because I’m having allergy symptoms, then it’s been long enough since I drank the oral cromolyn so I can take my other medications and eat because if I don’t eat with my meds, I will throw up. And oh, crap! I forgot to apply my cromolyn lotion so now it suddenly feels like the skin on my fingers is on fire. So. Much. Cromolyn. I’m also trying to remember if it’s been long enough since my last Benadryl dose so I can take another one. I hate being allergic to life. At least these treatments are helping, right? So I should be grateful for that, or something? Oh, and the elevator in my apartment smelled so strongly from someone spraying stuff in it (again!) that I had to go out of the parking garage and roll up the hill to get to the front door on the first floor where my unit is. That’s how I’m doing today.

What I actually say:
I’m fine. How are you?

Decisions like this are all too common in the chronic illness community. We make decisions everyday about whether to share our truths with others, or to make them feel better by giving them the answers they want to hear. It isn’t easy for others to hear that we’re hurting, and we know that. Most people are taken aback when I answer the question “how are you” with the truth: “I’m really not okay.” They don’t know how to respond. They don’t want to say the wrong thing or make us feel worse. The thing I wish people knew was that when we’re honest with you about our chronic illnesses, we want you to be honest with us too. Tell us you don’t know what to say. Ask us what you can do to help. Acknowledge that what we’re going through must be really difficult and you couldn’t imagine what that must be like. We want to know that you’re rooting for us. That you care and you’re not going to let us fight alone. When we tell you the truth about how we’re doing and how much we’re struggling, it means we trust you enough to let you in and we want your help. Don’t feel like you have to have all the answers for us–we’re not expecting that. We just want to know that you support us and that you’ll be there with us through the tough times.

If you’re struggling with chronic illness–or with anything, really–think about those people in your life that you might want to be honest with. Get some friends in your court so they can help you deal with the things you’re facing. It’s awkward and messy when we share our truth, but finding people that can help us makes it worth the momentary discomfort.

Sometimes it’s easier not to share how we really feel, but sometimes it’s worth it to share and let others support us in it.

Call the Disability Police!

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One day when I took Melek to the dog park, a woman walking back to her car confronted me as I was getting out of my vehicle. The conversation went something like this:

Woman: Are you handicapped?
Me: What?
Woman: This is handicap parking.
Me: Yeah…?
Woman: There’s a spot over there. *points to a non-handicap parking spot*
Me: I’m disa-
Woman: *interrupts* Ok, I’m just trying to enforce it so it’s available for you.

First of all, “enforcing” handicap parking laws is a job for the police. If she was genuinely concerned about someone abusing the use of a handicap parking spot, she should call the police and let them deal with it instead of taking the law into her own hands.

Second, and more importantly, this interaction was inappropriate because it’s not up to her to decide whether or not I’m disabled. I’m guessing she decided to confront me because I’m young and look relatively healthy (she clearly didn’t see the wheelchair in my van, the IV tube hanging out the top of my shirt, or my vested service dog in my back seat). If she had, I think it would have been more obvious that I was disabled. We need to break the cycle of thinking disabled people must look a certain way or their disability isn’t valid. Disability doesn’t have a certain appearance, and only your healthcare provider can determine whether or not you’re disabled. Honestly, it’s really no one else’s business unless you specifically choose to disclose that information.

If you see someone park in a handicap parking space with a handicap placard or license plates, please just assume that their doctor approved their permit and that they need that parking space, regardless of how able bodied they may look on the outside. Disability policing is damaging to those of us with invisible illnesses. Don’t try to be the disability police. If anything, you’ll probably make a legitimately disabled person feel inadequate and invalidated. The vast majority of people using handicap parking spots are not trying to cheat the system. Doctors don’t give out handicap parking permits to those who don’t need them. So please, before you try to decide whether someone is disabled and needs to use a handicap parking spot, remember that not all disabilities are visible.

Dear Paramedic

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This is a letter I wrote a while back after an experience with a paramedic on an ambulance ride that was less than helpful. Her intentions were good, but it had a very negative affect on me. Unfortunately, this is not an isolated incident. This has happened multiple times, often from well meaning individuals that are simply ignorant about disabilities and how much they vary in intensity and how they affect each person differently. Here is the letter I wrote; these are words I wish I could have said to her, and everyone else who has tried to “help” in a similar way.

. . . . .

Dear Paramedic,

I know this wasn’t your intention, but your words caused damage. You told me about your boyfriend, who is also a wheelchair user, and I smiled because I thought that meant you understood. But then you found out that I don’t currently have a job. I know you were trying to be helpful when you said I shouldn’t let my disability define me and that I can always find a job somewhere, but those words were the opposite of helpful.

As a disabled individual, I know that not all disabilities are alike. Some of us take medications, some of us use mobility aids, some of us have had a lot of good days recently, some of us have been experiencing constant flares, and some of us–a lot of us–don’t look sick, most of the time. When you compared my disability to your boyfriend’s disability, you weren’t understanding that disabilities vary greatly in how they affect our bodies and our lives.

When you said the things you did, I felt like a burden. I felt like I should “just try harder,” as if I’m not already giving it everything I’ve got. I felt unseen. It’s tough to be disabled. We’re often misunderstood because people compare us to others who are more able bodied and think we should be the same. But we’re not all the same. No one is in the same place in life as anyone else and there are countless battles disabled individuals fight everyday that we don’t tell anyone about. So please remember next time, before you pass judgment on another disabled person, that we’re all in different situations fighting different battles and even though we may look like we should be doing “more,” I can assure you, we’re doing everything we can to survive. And sometimes merely surviving is a full time job.

Daring to Begin…

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Multiple people have told me that I should start a blog because I have so many crazy stories from my life, mostly because of my battle with chronic physical and mental illnesses. As you can see, I finally caved and started this blog. My hope is that my blog will help spread awareness for disabilities and chronic illness, add humor to a battle that is often difficult and scary, and help encourage others who are also struggling with health battles so no one has to fight alone.

I may discuss things related to my specific illnesses, what it’s like to be a service dog handler, experiences I’ve had in hospitals and clinics, and how being trans has affected my experiences as a chronically ill patient.

We’ll see where this journey takes us. Thanks for coming along for the ride.