Living with Pain: An Invisible Disability

Last February, on the night before moving into our new apartment in Chicago, I slipped on a patch of ice. I landed on my back, in the same location where 14 years earlier I had spinal surgery that left me with 6 bolts holding my spine together. Later, I had a spinal cord stimulator implanted near the same spot.

The force of my fall jammed the stimulator into the surrounding tissue, where it became inflamed and embedded, causing me the worst, most sustained and most stressful pain of my life.

Disability-Isolation1Six weeks after my fall I was bent over in the lobby of our building, waiting for the elevator with my service/support dog, Dylan, a 29-pound rescue dog who took well to training. I was bent over, leaning against the wall to reduce the pain, when a tall man entered the hallway and stood staring at me with malice. I thought nothing of it.

Within moments an elevator car opened directly opposite Dylan and me. As I slowly raised my torso the stern man bolted across the hall to get to the doorway before me.

As I tried to enter on the left side of the opening, he stepped in front of me with his arms stretched wide and growled, “Take the service elevator.”

I was in too much pain to explain myself, so I moved farther to the left, and as I stepped in he shoved me backwards off the car. Pain detonated in my back. In disbelief, I regained my balance and stepped back into the car, while recognizing my assaulter as the same guy who threatened me verbally weeks before on the same elevator.

Previously, he was simply nasty. At that time I explained to him that I was disabled and who Dylan was. I told him the condo association and I had agreed –- using the Americans with Disability Act as a guide — that I could ride any elevator that was available and was not compelled, as other able-bodied pet owners, to take the service elevators.

Except when my pain is running high, I do take the service elevators with Dylan.

When home, I was shaken by how vulnerable I was in such a confined space with a man willing to be violent. Because of my disabilities, I’m largely defenseless.

This encounter is an extreme of the many I’ve had on the elevators here with people only too happy to tell me I was on the wrong car. Each time I explained why I could be on the elevator with Dylan. Patient explanations generally end these confrontations.

This is among the more outrageous examples of prejudice and stereotyping of invisible disabilities. More common reactions of the able-bodied are usually confined to my use of handicapped parking spaces. Mostly it’s just hard stares or muttered accusations. I’ve even been questioned by a policeman.

Much has been done to change attitudes towards people who are handicapped with disabilities. But my focus here is on the attitudes of some able-bodied people towards the millions of us living with the hidden disability of pain.

I have no idea if the angry, intrusive responses I and others get is simply the prejudice of stereotyping by the able bodied or something more pernicious and not explainable by prejudice or ignorance alone.

I’m inclined to see this as a part of a larger reaction to what a growing number of people in our society feel about those they see as “gaming” the system; whether it’s welfare, food stamps or those collecting disability.

Of course, there are those who do game the system, who do defraud assistance programs. We’ve all seen news reports of a healthy looking guy climbing up and down a ladder, carrying heavy suitcases, or playing football while pulling down disability payments from his unsuspecting employer. But they are clearly in the minority and we will always have these slugs.

How does this relate to attitudes towards invisible disabilities? When I notice someone staring at me when I exit my car in a handicapped space, I could think that they are simply making sure that I deserve to use it, that I’m handicapped, and that they are doing a public service by being vigilant for the disabled who really need the space.

But my recent experience with my new fellow residents has led me to think that while this may be part of the reaction of the able-bodied, it isn’t the whole story.

I think much of the reaction emanates from the notion that I’m getting away with breaking the rules: I’m a scofflaw. Their anger towards me is often palpable. They think I’m getting something for nothing and, in the bargain, getting something I don’t deserve.

In this mix are accusations of lying; lying about my disability, about my need for Dylan, and my need at times for special treatment.

I try not to respond, especially if it is a healthy looking adult, because I’m afraid of precipitating a confrontation that may lead to my injury.

Those with invisible pain live with a strange duality. Our pain is invisible, but our intermittent need for special care is very visible and often provocatively so. The safest way to handle this is with patient friendliness, as if it is a teaching moment. But that can be difficult.

It is important for you, the able-bodied, to recognize us and our invisible pain. I would be so grateful if, when you see a confrontation like mine happening, you would step in and protect me or my brothers or sisters.

Who knows, you may need protection yourself someday, in an unknown future where, unfortunately, the invisible may become visible to you.

Mark Maginn

Mark Maginn

Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog “Left Eye Blind” can be found here

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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12 Responses

  1. markmaginn says:

    I don’t ordinarily respond to comments but the comment from Rainey is too important to let go by.

    Rainey, I agree with you wholeheartedly. For me, however, there was an over riding impediment. My wife and I live in on the 38th floor of a 58 floor condo with 12 apartments for each floor, outside the utility and locker floors. As the man, on neither occasion gave me his name or even what floor he either lived on or was visiting I was simply stumped. I had no way to either identify him or other witnesses on whom I could rely.

    I firmly believe that those of us suffering from disabilities should always and everywhere take our complaints to the authorities, if we don’t we leave ourselves open to further attacks, especially if we’re identified as victims unwilling or unable to file a complaint.

    Although it is difficult for us to defend ourselves with an attack, we can certainly, ex post facto, complain about what happened.

    Though we are less able to defend ourselves, we should, and always, contact the police, and if nothing more, lodge the complaint so that it is indelibly on the official record. Sometimes these forgotten complaints can come to life through the new “reliving” of he episode.

    Mark Maginn

  2. dollie says:

    I too am disabled and find many people frown upon my service dog when she is with me in public. I just inform them this is the law and inform them how blessed they are not to require help, but that I will not tolerate any disrespect from them. Most people are very kind to me and understand but the others I just tell them to call the police and then I’ll have them arrested for harassment … They usually back down quickly. ?

  3. Rainey says:

    Since the man had harassed Mark previously, maybe Mark should have called the police. Getting arrested would hopefully make the man behave decently. They could also give Mark some pointers on what to do in a confrontational situation. I think Mark was in more danger than he knew.

    Being disabled shouldn’t make you an outlet for other people’s anonymous rage. But sometimes, it does. I too have experienced this type of discrimination. Somebody who I didn’t even know resented me because she knew I received accommodations. She would seek me out, to remind me of how unfair it was that I got special treatment. I ignored her because I didn’t have the energy or the time to pursue it. I wish I had alerted the school because it shook me to my very core.

  4. Jean says:

    I have a fibro, history of 5 back surgeries and arthritis, Some days feel aright and do things that I should not like mowing the lawn. Know one knows how I feel the next day. I know I have to take a day off the next day or two if I do it however I have a lawn to mow and no one else to do it and not enough money to hire someone. Yes, you all, I am on disability. Who would choose to live on it when there is never enough for what you need. But we are so limited in what we can do we should not be judged by people who don’t feel our pain. I have become an expert on hiding my pain.

  5. Kay Redmon says:

    I can relate to this experience, if you keep yourself well groomed, clean & tidy, you are told “how well you look” underlying the snickers, that you can’t really be so bad..Do we not spend those “excruciating hours to shower & dress clean “for our own personal benefit or do people think we should look like gutter snipe if we do suffer from any disability.What takes others 10 minutes, it takes us up to 2 hours to do the same, for the benefit of personal hygiene. I did have a run in with a group of young people, calling me names & threatening to disfigure my care, I was alone waiting for my husband, but I had my walking stick with me & in a moment of rage, I’m afraid I did lose it for a moment & swung the stick at the head of the ring leader, catching him with quite a blow on the ear. It certainly had the desired affect of what pack mentality was all about. I was 64 yrs old at the time & had suffered with FM, CFS & quite a few other conditions for many, many years. I immediately realized I shouldn’t have done what I did , but they certainly backed down with their threats & the foul language they were using. My husband appeared & wanted to know what was going on & immediately the young people started apologizing for their behaviour. So sometimes it might pay to take some action, on the other hand it could have been quite dangerous, but in my state of mind I didn’t think what the repercussions would be. I was extremely lucky & I must say that action has never been repeated. At times though it does get a little to much for you to take. I now take a deep breath & just ignore these people who I think might like the idea of a disabled parking sticker, but don’t have the intestinal fortitude to take what goes along with it. I think at times we are chosen because we can manage to live with the pain & the problems that go hand in hand with it & others would just crumble with it, not being able to cope at all. It does make you a better person, being able to see what people are like & making allowances for their ignorance. Continue to hold your head high & forgive these uneducated people who have most likely never had a sick day in their life. Know that you are a better person than they are, you would never show such contempt for people & have you notices that any help offered to a person with a disability comes from another person with a disability rather than someone who is considered “normal”..If that’s what being normal is all about, I would prefer to be as I am, I at least have my dignity, which I’m sure you do as well.

  6. MRaymond says:

    I can’t believe someone would be PHYSICAL like that with another person by shoving them! Rude! I would make a complaint to the homeowners association about that resident. You are right though, we are never going to be able to change people’s opinions of us. I too have a long term disability and severe nerve damage to four nerves in my groin, pelvis and leg which causes weakness and inability to stand or walk for very long. I have a handicapped placard as well and have gotten stares from old people in the parking lot for using the space like I’m way too young to have a disability that should require a placard. I also on another topic of discrimination have a handicapped son with autism, we get stares and snickers all the time in public because of his odd behavior. Why can’t we all just live our lives and let others live theirs? Why can’t we try to be a blessing to someone else instead of making their burden heavier to carry? Just know that you are not in it alone Mark. Great article!

  7. Wolfe says:

    I feel ya bro.
    It’s coming time for people to become more present in there own lives and stop acting as the self delegated hall monitor for society.
    Thank you for eloquently expressing what it’s like for us out here Mark.

    Hey everyone! Don’t forget the benefits of Cannabis! Newly available legally in Illinois!

  8. Thx Mark for sharing how living with Invisible Illnesses has affected your life, and the lives of others you know. I too live with MS, Lipus, RA, OA, Fibromyalgia, fractured Vertebraes, Spinal Stenosis, and numerous other chronic pain diseases. I walk mostly with cane or use wheelchair. I have lost friends, heard crude remarks, and had a disabled person see me in my wheelchair and her running inside the store say hey I am more disabled then you can I have your spot?? Sure and please take all my diseases as well!!! It’s the rudest I have been but I was not happy with the sarcastic remark.
    I often take a back parking spot, not having enough handicapped spots, and I am put in a vulnerable position. I wish I did not have all these II’s but I do. I deal with it by educating others. I thank you Mark for educating others as well!!

  9. While many of us with invisible illness have suffered the stares Mr. Maginn writes about, his assault is beyond anything I have ever heard of and is truly sickening! I suffer from chronic pelvic pain, Interstitial Cystitis, Epilepsy and walking is painful and I often need to park quickly to access a bathroom due to my urinary urgency/frequency (another whole topic). I have a handicapped placard and have received those stares myself, but to be assaulted is unbelievable and unacceptable. There does seem to be a feeling that those of us suffering from invisible illness are “gaming” the system. In my state, Illinois, I was just notified that I have to re-apply for my handicapped parking placard because our State Legislature has passed a law, because they believe there is rampant abuse of this privilege. This does nothing to help the cause of those of us suffering from invisible illness.

  10. Patti says:

    I empathize & relate with the shocking & rude attitudes from the able-bodied.
    I have central pain syndrome & require the use of a mobility scooter during public outings (as walking is excruciating). My husband frequently observes rude & glaring stares @ me by various able-bodied folks.
    Human nature is what it is, but the attitudes hurt.

  11. LKnight says:

    Mine came in the form of a doubtful mother in law. I have small fiber fibromyalgia. It started in 2006 and quickly ramped up from there. In 2008, we were forced to move in with the in laws. It took me 3 years to convince her that I was indeed in very serious pain. She would often complain to my wife while they were driving somewhere or, if I wasn’t in the room. Worse yet, she spread her ignorance around to others.

    She has since “seen the light”, after seeing me in pain for those years we lived there. Having some really bad pain during winter here in Wa state helped her to see that. As did finally getting a diagnosis.

    It is hard to leave our prejudices behind. Many people are a “believe it when I see it” type. Others have not experienced truly intense, long term, pain. They don’t know how to recognize it in someone who is not otherwise blatantly showing it. I honestly don’t think it is something that will ever change though. We just aren’t programmed to or, just don’t pay enough attention to someone’s body language.

  12. I would like to be able to say I am shocked by the behaviour of the man in the elevator, but I am not. The harshness and disdain for victims of severe chronic pain comes in more subtle forms, even from within the medical profession. How many times have I seen pain victims with serious active medical problems treated with the same disdain by health care workers who shun them aside as bothersome “addicts”. Is there much difference between the man in the elevator and those doctors who willingly provide shots, and ONLY shots to pain victims? And then there is the treatment of the dwindling number of doctors who have treated chronic pain victims with medication rather than shots. Those doctors are scrutinized and drummed out of business, frequently avoiding criminal prosecution by admitting, often through their lawyers, as being “too soft” on the pain patient, or being “gullible” or being “too trusting”?

    It seems to me that the roots of these misguided attitudes are the same: disdainful prejudice against the victim of chronic pain.

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