The Chronic Illness Files

The Chronic Illness Files: Five Things You Shouldn’t Say to Someone with an Invisible Disability

Hello. Some of you may know me well enough to know that I battle several chronic health conditions and almost every single one of them is an Invisible Disability; however, for those who don’t know, I have a long list of health problems. We’ll dive into that in a bit, but because of my real life experiences I feel compelled to do this series of blog posts about the issues I, and unfortunately so many others, face as we live with a Chronic Illness.

Incase you are curious about my list of issues, here are some highlights:

  • Dysautonomia
    • POTS: Postural Orthostatic Tachycardia Syndrome
  • Hypokalemi Periodic Paralysis
  • Inoperable Bilateral Madelungs Deformity
  • Meniere’s Disease
  • More Common Issues:
    • Asthma
    • Migraines
    • Anxiety and Depression

Totally feel free to google those, because to explain all of that at once would be a really long post and as a wise woman once said ‘Ain’t nobody got time for that’.

Warning: this post is full of sass.

Scroll down for Five Things You SHOULD Say to Someone with an Invisible Disability.

Five Things You Shouldn’t Say to Someone with an Invisible Disability

These can pertain to any Invisible Disability, but are specifically written from my personal experiences. So, here we go…

Negative Comments About Parking in a Handicapped Spot

Okay, okay, okay… I get it. You drive up to the parking lot at Target and a few thoughts pop in your head: 1. Why are all of you people here? 2. The rug in that woman’s shopping cart is so cute and would look fabulous in my living room. 3. Why are there never any parking spots open? 4. Why are there so many handicapped parking spaces? Like seriously is Target a secret gathering space for handicapped people? 5. Why are all of these handicapped spaces EMPTY?? **It’s the only time anyone ever wishes that they themselves were handicapped. Don’t deny it. I see you.

Then as you sit in your car stalking people walking out of the store so you can wait for their parking spot, you see it. A car parks in a handicapped place and everyone WALKS out of the car and into the store. [Insert mumbled cuss words of frustration].

Like I said, I get it. I completely understand how easy it is judge someone without taking a pause to see things from the other person’s point of view, but take that pause because you don’t know what is going on with that person. I am that person. I have to use the handicapped parking spot sometimes because I don’t have the energy to walk from a further spot (even though I can physically walk). Sometimes the cold winter air will set off a paralysis episode, so I need to walk as short of a distance as I can to get inside, because being paralyzed isn’t fun. On the flip end of that, sometimes the heat of summer will set off a POTS episode and I do not like fainting in public places.

Either way, you don’t know me, or the other strangers you may see walking out of their cars after parking in a handicapped spot, so please please please take that pause to remember that not all of us are blessed in the same ways and we each have our different cross to bear.

Bonus Things Not to Say:

A mother to her teenage daughter: ‘Don’t you ever be like that (pointing to me in the store scooter) stealing a cart from someone who really needs it just because she’s lazy.’

“Can You Get Up (off of a store scooter) My Grandmother Really Needs It”

“You Don’t Look Sick”

Thank you. I know that I may look fabulous today but two things:

  1. I don’t always look this good. Actually, most of the time I look sick; the deathly black circles under my glassy eyes, pail skin, purple swollen legs, grinding my teeth in pain, half conscious, haven’t showered, cold and yet sweating, can’t form a coherent sentence, mouth breathing, gross kind of sick that looks as if I should be in a hospital bed. That’s my “sick” look.
  2. Want to know why I don’t “look sick”? When I am sick, there is no way on God’s great earth that I am leaving the house. I can’t go anywhere when I am too brain fogged to remember how to breath through my nose or so dizzy that I black out literally every time that I stand up; and yeah, on those days I don’t look so great. There are so many days that I can’t leave the house; so no, today I don’t “look sick” because when I am out of the house it’s because I feel well enough to do so.
  3. Bonus Thought: it’s called an Invisible Illness, you don’t have to have something visibly wrong with you to have a disability.

You Should Try [Insert Some Really Dumb Magic Cure You Found from Dr. Google]

Seriously?

I am so happy for that lady in Guam who has Dysautonomia and has cured her disease by eating nothing but avocados for three years and that you were able to find such a rare story by clicking a link off of WebMD, but that person isn’t me and this is awkward.

This type of comment comes from love. The person who says something like this obviously cares, but seriously? Where is your PHD, because I had no idea you were a doctor and had any credentials to be telling me how I should live my life.

I know you’re making an attempt to help me in some way, and I love you for that, but this isn’t something you should be saying. Just give me a hug.

You Were Fine Yesterday

I know, so please don’t make me feel guilty for the good days that I have. Many Chronic Illnesses have symptoms that fluctuate. Some days are beautiful with few symptoms and little to no flares; then there are other days filled with crazy symptoms so severe that they are life altering.

“Chronic” doesn’t always mean consistent. Unfortunately for me, and so many others with Chronic Illnesses and Invisible Disabilities, I cannot rely on my body. I have to take things day-by-day and sometimes even hour-by-hour.

At Least It Isn’t X, Y, or Z

When I hear “at least it’s not cancer” or “you know, there are people who have it worse than you” all I can think of is how misguided these comments are.

I do not gain any satisfaction in thinking about the suffering of another person, that’s just demented. It doesn’t make me feel better. Now that you’ve said that, I am thinking of the pain and suffering of the world which can easily lead to depressive and/or stressful thoughts that can make my symptoms flare (get worse than what they are now).

No one wants to be handed a plate of depression and stress to eat, so please don’t serve it to me. Think of something else to say.

Five Things You Should Say to Someone with an Invisible Disability

You had to cancel our plans, that’s okay… Let’s try again next week.

How are you doing? (Ask with authenticity.)

If you ever need anything, let me know.

I will pray for you.

Keep Fighting.

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