Posts Tagged ‘Spoonie’

I’ve laid among luscious organic avocados in the Wayne Ave Kroger produce department. I’ve become one with a Jenga-esque display of Busches Baked Beans at Dots market. I’ve tilted my head back for a drink at the bar, and my body followed.  I’ve counted ceiling tiles, read obscure and poetic graffiti written on the undersides of tables, and felt the blow of an ice block on the back of my puffer coat cushioned head. I can tell you exactly what any given floor will feel like when it connects suddenly and violently with any given body part. I can tell you what emergency room has the warmest blankets and the most attentive staff. I pass out, like, a lot. This is my invisible illness.

I have a condition known as POTS (postural orthostatic tachycardia syndrome) with orthostatic hypotension and nuero cardiogenic syncope. It’s a mouthful, I know, and I’ll spare you the medical terminology and just say that basically, I can pass out at any given moment, with or without warning. There are many other pesky issues that come along with POTS (including, but not limited to, dizziness, digestive issues, migraine headaches, muscle and joint pain and my least favorite of all, extreme fatigue and the dreaded “brain fog”) but the losing consciousness bit is kind of the kicker.

I’ve opened my eyes to find friends, lovers, strangers, animals and various insects looking upon me with curiosity, fear, pity. It would be easy to see me strewn across the floor, with or without accompanying produce or canned goods, and say, “that poor girl, what an awful disability to live with!”.  That’s the thing with having an invisible illness, I look completely normal! I’m not in a wheelchair, I don’t walk with a cane, I have no outward deformity. Unless you are someone who is very close to me, lives with me, treats me, or just happens to be at the right (wrong) place at the right (wrong) time you probably have no idea that there is anything wrong with me.

If you see me out it is because I am having a good low symptom day. There are days that I feel I can take on the world! I can read, walk, workout, get drunk, have sex, party hard, party medium, take photos, write poetry, pay bills, do taxes, get on stage, live life to the fullest! There are days when I may attempt these things, and play off the unwanted results.  It’s easy to play off dizziness at the bar or a party, you can just play drunk! Passing out at the gym can be explained by “going hard bro”. Brain fog causing an inability to form complete sentences, I’m just a ditsy girl, duh!  How convenient! So far doesn’t sound so bad, eh? How about the bad days. The days my eyes won’t focus and my ears won’t stop ringing. When I can’t get out of bed without passing out. The days I can’t walk a straight line. The days I can’t leave my house, make my husband dinner, help my child with her homework or do anything productive.  How about a week straight of days like this. You wouldn’t know, I would never let you see. It’s invisible.

Having an invisible illness just plain sucks, and here’s why. No one understands. You look like a completely normal, functioning human being.  No one understands your limitations. Why did you cancel plans at the last minute? Why can’t you come to my party? Why don’t you work? Why do I have to pay taxes while you sit on your ass and drink soda, eat bon bons and watch tv? People with invisible illnesses get a bad rap. We are often put in the lazy or crazy category. If you have depression you are just crazy.  Bipolar Disorder, Schizophrenia, you are REALLY cuckoo! Oh, you have fibromyalgia, you know that’s made up right? You just want attention. Rheumatoid Arthritis, that’s just for old people, right? Sticklers, what the hell is that? Epilepsy, are you sure you have that, I’ve never seen you have a seizure? Celiac, Crohn’s, good God man, how many times can you shit in a day? POTS, it’s like a parlor trick, watch my girl Cheryl pass out for attention.  Yeah…we are all just lazy crazy attention whores who just don’t want to work or follow society’s rules.

There is never a shortage of high and mighty douche bags who are willing to pass judgment and declare you a lazy fat faker, or maybe that’s just my experience. People like that can make people like me reclusive, shamed, and even more hesitant to participate in society. It’s bad enough that folks with invisible illnesses have to suffer a myriad of physical and mental ailments, but we also suffer a society that largely misinterprets our disabilities as a hand out. Yeah…give me that social security disability check, I don’t need to feel like a productive member of society. I don’t mind people thinking I’m a lazy POS.  I like feeling helpless and useless.  I don’t mind that I have had to give up my dreams.  That as a photographer I can’t hold a camera without shaking.  That as a writer I forget how to use simple words like “the” and “and” and? That as a performer I have to deal with the anxiety of passing out on stage, not to mention, deal with actually passing out on stage. I love that people don’t respect me. It’s fun to spend all my money on the doctors who took almost 15 years to diagnose me. Yes, that check totally makes up for missing out on so much of what makes up human self worth.

Here are some fun facts about invisible illnesses that support the idea that it would be “fun” and “a privilege” to get to have one of these exciting and interesting chronic ailments that cause you to be unemployed, either by choice or by law.

Invisible Disabilities are defined as symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions, learning differences and mental disorders as well as hearing and vision impairments.  These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person, day to day. – Invisible Disabilities Association – IDA

Seven out of every ten deaths in the U.S. are caused by chronic conditions. (CDC, National Center for Chronic Disease Prevention and Health Promotion)

Approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)

The divorce rate of the chronically ill is over 75% (National Health Interview Survey)

Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and 50% of these suicidal patients were under the age of 35. (Mackenzie TB, Popkin MK :”Suicide in the medical patient”)

Depression is 15%-20% higher for the chronically ill than for the average person. (Rifkin A. “Depression in Physically Ill Patients”)

“Because pain often shows no physical signs, people including health professionals will often not believe sufferers are in pain which is one of the reasons they are at such a high risk of depression, anxiety, social isolation and relationship breakdown.”- Coralie Wales, President of Chronic Pain Australia

Sounds like a reasonable trade off for a “free” paycheck, right? Some sufferers are so rejected by society and the medical community that they end up homeless. Mental disability patients go without treatment and become the so called “crazy people” on the streets. Some chronic pain sufferers push down the agony with pills that lead to addiction. The anxiety sufferer may only find refuge in a bottle of whiskey, the man with depression might not make it through a day without a nickel bag of funk.  Society is unkind to those who don’t/can’t pull their weight.  People generally can’t be bothered with the reason I can’t work, the reason Charlie pushes his shopping cart.  The reason little Bobby can’t sit still in class.  The reason Phil started hitting the rocks.  Without a good support system, and the ability to shrug off the assholes who want to paint you as lazy or crazy, invisible illness can wreck you, beat you down, and even end your life.

When I was first diagnosed with POTS, about 11 years ago, it was considered a pretty rare disorder. Not many doctors were familiar with it, and certainly not with the degree of my symptoms (at one point I was passing out around five times a week!). I felt crazy! I had huge issues with anxiety, I was afraid to go anywhere because I didn’t want to pass out in front of people. I felt alone, no one understood. I think many invisible illness sufferers feel the same way.  They want so badly to talk to someone and have them get it!  I was finally referred to this saint of a doctor, Dr. Grubb, at the University of Toledo clinic for autonomic disorders. He understood everything! My first visit he just let me talk, and ask questions for four hours! I met people in his clinic with the same issues, but different triggers. There was a man there who would pass out the second any cold liquid hit his throat! There was a 16 year old girl who had to quit high school, because she was considered a liability.  She passed out several times a day! Her little brother told me that he always knows when she wakes up in the morning when he hears the loud crash of her body hitting the floor.  She was in a full body cast the next time I saw her.

Suddenly, I didn’t feel so alone. There were other people like me. If you have an invisible illness, there are other people like you. People you can connect with, and trust me, talking to them, or reading about them will make you feel less alone. Get online, Google depression, fibromyalgia, IBS, POTS, RA, whatever you have, and look up support.  If you happen to know someone with an invisible disability and find yourself jealous that they don’t work, or find yourself having a hard time understanding their issues, talk to them!  If you care about them, ask questions, try to empathize.  If you really care about them, do some research of your own. Or you can just be an insufferable dick and try to convince yourself and everyone else that they are just lazy or crazy, whatever, we’ve dealt with worse. My point is, there are resources out there to help you deal with your struggles.



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