Sally Fowler

@sallyfowler3 | contributor
I have been battling CRPS for 11+ years. It started in my right arm, and spread to full body. For 6 years, I coped with the daily assistance of my 1st service dog, Robbie, whom I trained to assist me. He is retired, but his successor is in training. Now I run Disabled Advantage, a dog training business to help others with CRPS and other mobility disabilities learn how to train their own service dog, like I did with Robbie. If you have questions about CRPS or service dogs for CRPS, send me an email through my personal blog about my service dogs, or through Disabled Advantage, at DADogTraining.weebly.com
Sally Fowler

Tips for Calling Health Insurance Companies and Your Medical Team

Last year, I had to call my health insurance company so many times I now have their number as a contact in my phone. This year seems to be continuing the trend of needing to call to discuss one thing or another far more frequently than I’d like to be calling. Frankly, I miss being a kid and being able to hand the phone off to my dad, letting it be his problem. If it isn’t calling the health insurance company, it’s negotiating with doctors’ receptionists who think they know it all when in truth they know very little about your particular case or what’s going on, or the billing department for the fifth time because a bill is still incorrect. Worse still, is calling office after office trying to find someone who will take you on as a patient. If you’re a rare patient, you’ll be making a lot of calls. And to think, people still believe others “fake” their condition or disability for the fun perks! Ha! This is not fun. These are not perks. I’d much rather call someone else than my insurance company, various doctor offices, or the billing department. Nonetheless, these calls are inevitable when you live with a chronic illness, as I do. I’ve had complex regional pain syndrome for about eight years now. In that time, I’ve made a lot of difficult and stressful calls to find answers, fix billing errors, ask for appeals on claims and more. I’ve learned a few tips to pass on for what not to do, and how to handle these calls while remaining calm, professional, and only frustrated on the inside. What not to do: Don’t swear. Don’t yell or use an aggressive tone of voice. Don’t use demeaning words, even if they don’t know what’s going on or haven’t been helpful. Don’t hang up on them. You may not be aware of this, but it is possible for a doctor’s office to “fire” you as a patient. If you are overly aggressive towards their staff, there is a very high chance of this happening to you. It does not matter if you feel justified in being upset – they have a right to not be treated like chew toys. What to do instead: Take notes. Before you place the call, grab a notepad or an empty sheet of paper if you use a medical binder. Write the date, who you are calling, and jot down what you need to talk to them about, as well as any questions you have with space underneath for the answers. As you go through the call, write down what is said. Also, write down what call number this is, so that if the problem persists you can say how many times you’ve called. Use fun colored pens for your notes. This seems silly, but it can make looking at the notepad less stressful. Smile! The person you’re talking to can’t see you smiling, but it’s hard to be terse with someone and smile at the same time. Write down their name, and clarify that you have the right name before you continue with your call. Recording the name helps you keep better records, and can help clear up future problems. Using their name while you talk to them makes them feel like they are being heard and respected. Forgetting their name, even if unintentional, makes them feel like you don’t care what’s being said. “Please” and “thank you” go along way. Even if they weren’t helpful at all, it helps to continue on with good manners. Remember that they are people too. Chances are, the person you’re talking to is not the one who screwed up. They’re probably used to getting yelled at, but that doesn’t mean you have to be one more reason they hate their job. Be polite, say thank you, keep it chill. This will likely surprise them and they’ll be more willing to help you. Also, if this is someone you’re likely to be calling again at some point, it will serve you better to be nice, no matter how angry you are. Find a frustration outlet, other than them. Doing something that allows your frustration to vent out safely can help you stay calmer while talking to them. Pace back and forth, ride an exercise bike or walk on a treadmill, play with a fidget toy, play with therapy or silly putty, stroke your pet. Something that gets the energy out, but that won’t distract you from your conversation. Only do a set number of calls in a day. If you have a lot of calls to make, you are probably going to be more worn out by the last one. A tired person with a chronic illness is a person more likely to be terse and frustrated. Break up the list and limit yourself to two to three calls instead of all five to six. Make your calls first thing. If you can, making the calls first thing accomplishes two things: You know you’re calling at a time when they are open, and you get the calls over with. If your condition is worse in the morning, wait until a time of day when it settles. Be friendly. Sometimes you may hear a representative apologize for their computer being slow. Reciprocate their frustration by making a light comment about how it’s Monday and the computer just doesn’t want to work. Or tell them that it is OK, your computer is slow too! If they ask how your day is going, answer them and ask about theirs. If you have chronic pain, get yourself in a comfortable position. If you force yourself to hold a position that triggers more pain, it will make you more stressed out, tired and less patient. I use all of these tips, and the result? These calls are still difficult, but I’m a lot better at staying professional and tactful, even when I’m furious. I take notes with fun colored pens — usually two colors, one for questions, one for answers. I smile real big even when fuming on the inside. I’ve played with therapy putty, stroked my dog, or ridden an exercise bike while making calls. I use people’s names, say please and thank you, and engage in non-related conversation. I remind myself that they are people too, doing a job where they probably get yelled at more than thanked. Sometimes I even encounter people who are just as irritated as I am that I’m not getting proper care, or that a bill is repeatedly wrong, or that I can’t get approval for a treatment that could help me. Part of chronic illness means having to call these types of businesses far more often than the average person. You’re forever in a long-term relationship with your health insurance company and countless doctor offices. It’s a good idea to cultivate a good relationship, as best you can, even when it’s hard. It’s incredibly easy to yell at the faceless voice on the phone. But easy isn’t always the best method.

Community Voices

Theoretical vs Actual CRPS Cognizant

I live with #ComplexRegionalPainSyndrome, and recently I made a discovery when it comes to educating others about CRPS. A discovery I feel I should share, to help others understand the disconnect that often happens with friends and families of those with CRPS.

In the beginning of my diagnosis, I didn’t have a support system. Friends and family who had known “healthy” me for years couldn’t wrap their heads around an invisible pain condition. They were 800 miles away from me when the pain started, and never got the chance to spend enough time around me to learn that not only was it real, but that it was devastatingly painful and debilitating.

In the last two and a half years, I have encouraged myself to become more open about sharing my life with CRPS, in the hope that it would bridge the gap between my family & I, helping them to understand my new life. I began writing Facebook posts about the bad flares, sharing about my accomplishments, passing on articles that discuss new research discovered or new treatments being tested, and writing articles for the Mighty about what life is like for me. I answer questions, and I’m open about what level of pain I’m in (at least I try to be). I still hide the worst flares some days, because I can’t always handle needing to take care of their distress from knowing I’m in distress. My friends and family hit a turning point about two years ago, once they began to accept my condition and see how much my service dog helped me do each day. Perhaps seeing what he did for me helped them understand just how widely CRPS impacts my life. I need help sorting laundry, loading a washer, moving laundry baskets, opening or closing doors, standing up, and more. The point is, my people began listening for the first time in years. They began being more supportive, more understanding, more inquisitive about it, and were genuinely invested in my life with CRPS.

Recently, I had the chance to see many of these people when they made a special trip out to the countryside to come to my wedding. I was ecstatic about getting to spend time with the people I grew up around, and was eager to see all my hard work of educating them about CRPS be put into actual practice.

I thought that because I had educated them, shared with them, and been open with them about the pain, how it affects me, what Robbie helps with, what the pain feels like to me, and more, that they could be as supportive and understanding in person as they had been over the phone or video chats.

This was not the case. I got gut-punched by ignorance, toppled over by lack of thought, & swept away by my own expectations.

At the time, I couldn’t understand it. Everyone was supportive, asking me how I was doing, if I needed anything, what they could help with, what pain level I was at, and if I needed to rest, but it ended there.

I discovered an immense shortage in their ability to listen to what I’d said about CRPS and its affect on me, and then make connections to real-life instances. It was incredibly confusing, disheartening, and frustrating.

Online, I could share articles about the irritation of healthy people taking advantage of handicap spaces and my healthy friends would be supportive, and in agreement. But then in real-life, one of them blocked several handicap spaces to swing her car over to let another friend out. I was so furious I couldn’t even speak. I knew if I opened my mouth, it would erupt with a stream of curse words at her ignorance. Yes, it was only for a few minutes, but that doesn’t negate how incredibly thoughtless and disrespectful that was of her towards disabled people everywhere.

In an email, I could share how I had a rough day of errand shopping because there was lots of walking, standing on concrete floors, or standing for long periods in lines that triggered a massive pain flare in my legs and hips. The friend or family member I’d be emailing would be empathetic, relating that they could see why such activities would be painful for me. Upon being in the moment, and discussing it as it pertained to specific situations, however, it was a shock to them that standing still for 15 minutes or longer might be extremely difficult and painful for me.

Over the phone, I could relate to one of my closest friends that I was unable to go to places with loud noises, vibrations, uncomfortable seating, or do things that needed a lot of movement because of the pain and/or sensory overload episode it would trigger. Then they planned an activity of sitting on metal stools, in a concrete room, doing crafts that required significant hand dexterity, where I’d be subjected to others using hammers nearby. The repetitive slap of hammers upon the table made it impossible for me to touch the table and made my ears feel as if they were going to explode inside me from the resounding clack of metal hammer slamming down upon a wooden object, reverberating against a metal table. I was furious, but didn’t say anything because it was a pre-planned event, I had wanted to be surprised, and I wasn’t sure I could gracefully tell them how terribly wrong they were without being hurtful. I blamed myself, telling myself that I must have not done a good enough job explaining how CRPS affects me; except that I did.

This article isn’t meant to place shame or blame on anyone in my life. That’s not my intent at all. I share each of these experiences to show the massive amount of disconnect that happened that weekend. To show that even if you do all the right things by trying to educate, and trying to listen & use what your chronic friend has taught you, there will always be a disconnect.

I’ve spent a lot of time since the wedding thinking things through, the same way I would any problem I encounter. And I think I’ve figured it out.

When a police cadet is in the academy, they learn a ton about being a police officer! They read about laws and procedures. They practice honing their reflexes to shoot the cardboard villain, not the cardboard grandma. They learn about how to work with a partner, how to work a beat, how to read someone their rights. They learn what not to do. They learn how to properly case & clear a building. They learn massive amounts of correct, factual information from both books and experienced officers, that the cadets are then expected to properly implement when they graduate and join the force.

Most rookie officers will make lots of mistakes along the way to learning how to be a good police officer. Up until now, they’ve been learning how to be a good police officer, but now, they’re thrown into the streets and expected to be one. They know how to clear a building, but they won’t always do it right the first few times. They know the laws, but they don’t have the experience of dealing with them in the moment, and knowing how to work with the shades of grey that apply within the justice system. One day, with enough real-world, real-life, in the field experience, they will be great cops. As rookies, they got a ways to go.

But everyone understands that, because it’s just the way it is. It’s no one’s fault. Over my wedding weekend, I was surrounded by rookies, and expected them to already be great cops.

I’ve realized that my friends and family who live hundreds of miles away may never be real-life CRPS cognizant. They may only ever be theoretical, CRPS book cognizant. They won’t have the chance to graduate, because what they need to graduate is a way to be in my world on a daily basis, experiencing the bad flares, the sudden flares, the weird flares, and the good days where the flares are minimal. They won’t be there to see me shift my weight in a store the longer I have to stand on concrete floors. They won’t come over just to watch Netflix all night while I lay in bed. They won’t have the chance to squeeze my hands during the flares that crash into me like waves. They won’t be close enough to go to doctor’s appointments with me and hear how I have to advocate for myself. They won’t have the option to resist the urge to jump up to help me, but instead hold back to let my service dog do a task for me. They won’t experience the gut-twisting feeling that my husband feels when he watches my face twist in pain, or the way his breath catches when he watches me do something he knows will trigger pain.

They can read my stories. They can listen to me rant over the phone. They can empathize with my doctor-horror story sagas. They can do their own research about CRPS, or read new information I send them. They can tell me they love me, that they are proud of me, and that they are here for me. That needs to be enough, because from where they are, that is their best.

I have a select number of people in my life who live close enough to me and see me often enough that they are either already real-life CRPS cognizant, or are learning how to be. My husband is excellent at being both real-life CRPS cognizant and theoretical CRPS cognizant. My best friend here is the same. My dad is one who has somehow managed to figure out how to be both, despite living states away. He isn’t perfect, but somehow he is doing it. I am fortunate to have them, and am grateful for them every day.

I am sad that the people who I grew up with, and the people who raised me will likely never be real-life CRPS cognizant. I think they could be, but it would take a lot of attention to detail and commitment on their part to be immensely aware and present in each moment, when we are able to spend time with each other, that it might take away from just enjoying the time we have together.

I think I can make my peace with that, though I imagine that I may struggle with flashes of frustration when I spend time with those who want to be real-life CRPS aware, but just aren’t able. It’s not their fault that they live too far away to go out on a beat with CRPS. It’s not my fault either. It’s just the way it is.

Community Voices

Does anyone have any tips for better posture for mental health sufferers? #situp #chinup

I have appalling self esteem, dyspraxia, and mental health issues. This has affected how I hold myself - especially how I stand and sit. I am becoming quite round shouldered. I wondered whether anyone had any tips to help. Exercises are great, however if it is very difficult to brush your teeth, it can be extremely difficult to engage with exercises. I sleep with a pillow in-between my legs at night currently. #posture #mentalandphyscial #Selfesteem #Selfconfidence #Cyclothymia #Dyspraxia #Anxiety #Depression

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Community Voices

Extraordinary is a Matter of Perspective

Extraordinary is a matter of perspective. When others look in

on my life, they call what I do every day extraordinary, when to me it is

ordinary. It is my life. It is normal. I do what I do and am who I am because

if I didn’t… well quite frankly… if I didn’t, there wouldn’t be a point to

being alive.

I live with a severe form of #ChronicPain called Complex

Regional Pain Syndrome. It is widespread, full body nerve pain that leaves me

wracked with pain that measures off the charts. My brain, as part of the disorder,

interprets all incoming stimuli as pain signals, meaning everything I

experience in life is pain. Varying degrees of pain, but pain nonetheless. I

can’t even experience pleasure without a dose of pain on the side. Each day,

though, I wake up, get dressed, and live the best life I can fashion for

myself. I partner with a service dog who helps me be more independent, I’m

trying to set up my own business, I’m a good wife, I’m a loyal friend, and I

love being active outdoors. When the pain lets me, I ride horses. Unless the

weather is bad, I take my dog for daily walks, even pushing myself to go on

2-mile walks on the good days.

Living with pain like this is ridiculous, don’t get me wrong.

But for me, it is ordinary. This is my normal. To the rest of the world,

though, my life seems extraordinary. I’m a hero. I’m an inspiration. To me, I’m

just living life.

People are amazed at my ability to start a business, train a

dog, even just get up and function with a smile when I feel like I’m

being tortured. They believe this to be

extraordinary because when they feel crappy, they maintain the option of lying

in bed, drinking fluids, resting up, and feeling better in a few days or weeks.

When they have a #Migraine or the flu, the mere thought of having to go to work

and deal with people or take a shower is a monumental task they’d rather just

avoid. The catch, the key element in that scenario, is that they can. If they

really wanted, they could just pull their head back under the covers, hide from

the world, and wait for the pain or sickness to go away, to give them back

their normal. Once their normal is returned to them, they are more than ready

to conquer the world again. I can’t pull my head under the covers and wait for the pain

to go away. It never will. I would die waiting for the pain to go away before

the pain would actually go away. The only way I could “opt out” of life until

the crappiness ended would be to literally opt of life. I’d have to be dead.

And I’m not ready to die.

I want to fight to live. I want to fight with all my strength. What looks

like extraordinary acts are me fighting. Me living. Me refusing to opt out of

life. Pain is ordinary for me. How do I do it every day? By accepting that pain

is ordinary. 

People who promote positive thinking and mindfulness suggest

that people adopt a mantra that helps them face the world. Want to know mine?

Pain is normal. Remember that. Pain is normal. Nothing is wrong.

Everything is fine.

I accept my life, I accept that this is how it is. When the

pain first started, I was a wreck. I couldn’t accept that pain was normal and

it just about destroyed me. Once I began to accept that pain was normal, and

remind myself during the worst parts that I would be ok because it was normal

to feel this way, and that I could handle it, I learned how to be able to face

the world again. My body has adapted to the constant flux of adrenaline, high

pain levels, stress, and energy loss. It has reprogrammed itself to function

under duress because there isn’t another way. It’s a testament

to how strong our minds are and what our bodies are truly capable of when

conditioned for something.

I can function in severe pain because my body and brain have

had 8 years of conditioning to learn how to do it. Yours can’t handle

functioning in pain because it hasn’t been forced to learned how to. Some

people can function during moments of high pain, like during disasters, because

the adrenaline helps you do it. Once the disaster is over, your adrenaline

washes away, and you collapse in fatigue, amazed at what you were able to do.

The disaster is never over for me. My adrenaline never washes away. I certainly

collapse in fatigue some days, but I have to push myself to get back up without

waiting for the fatigue to end. Rest doesn’t matter. Time doesn’t matter. I am

amazed at what I can do on my worst days. I’m amazed that my body is both

incredibly fragile and remarkably strong enough to withstand what should be

medically impossible. Amazed, but I don’t necessarily see myself as more extraordinary than anyone else.

Most of us in the chronic world get irritated with people who tell us “I don’t know how you do it.” I can’t lay claim to knowing why it

bothers others, and up until recently it bothered me too. I’m

learning to change my own perspective of that statement, though, based on the answer my husband gave me when I asked him where those words come from for him.

He told me that for him, when he doens’t feel well and says, “I don’t know how you do it,” it is coming from a place

of true admiration, amazement, and respect. He recognizes how much strength it

must take to compartmentalize the pain and still be able to laugh, be friendly,

be polite, hold my tongue in a moment of anger, be professional, and live my

life. From him, I can accept these words easily because I know he sees the

truth. He sees the days of strength and the days my brain says NOPE & I

have a meltdown. He sees me as strong and incredible, but not as some mythic

superhero. He knows I’m not perfect. In his eyes I can be inspiring, but also

not strapped to some mighty pedestal for all to gawk at in awe. He doesn’t

question the validity of my pain with his statement. He knows what I’m fighting

for, and he fights alongside me. When I hear it from strangers, I worry that they question the

validity of the pain. I feel like they don’t understand that it’s get dressed

or it’s end my life. They only see what I project for the world to see. They

see me functioning, and believe that nothing is wrong or that every time they

see me function, it means I’m having a good day. They don’t see the messy side. I

never know if their words come from respect or doubt. I never know if they see

me as a person making the best of a crappy deal, a mythic superhero doing the

truly incredible, a person lying about their health status, or an unstoppable

force of nature.

If I were to reply, “It’s get dressed or kill myself,”

most people would be horrified that someone as young as myself would say such

horrid things and surely this must mean I’m depressed. I’m not anywhere near

#Depression. Think it through: My pain will never go away. Waiting it out isn’t

an option. Functioning, is an option. It’s function or stop functioning. “Stop

functioning” is a synonym for dying. Dying permanently or dying slowly as I rot away staring out a window without hope or a reason to fight back; either

one would constitute what “stop functioning” would mean for me. I’d really

rather not die just yet. And I absolutely refuse to live out my days watching

the world from a window & a chair. I’ve got big dreams yet to live out.

I know that when you say, “I don’t know how you do it,” that

you genuinely don’t know. You aren’t supposed to know. Your brain works right.

Mine works differently. I’m not sure what a better thing to say might be. Just keep

in mind that that phrase may not always be well-received by the person hearing

it. People everywhere all over the world do incredible things

when they are put under pressure. It doesn’t matter if it’s meeting an

impossible deadline at work, saving a busload of people from a crash, juggling

being a single parent of three kids, or living with a #ChronicIllness. We all

do amazing things, and it doesn’t necessarily make any one of us more extraordinary

than another, but maybe it’s not such a terrible thing to see each other as extraordinary. I’m impressed that my dad raised three girls by himself after my

mom died, but I don’t know that he would see that as extraordinary. Being a dad

was normal, it was part of the deal for him to take care of us, no matter what

life threw at him. I’m impressed by firefighters who put their life on the line

to rescue people from burning buildings, but that’s their job. That’s their

ordinary. Running into fire is normal for them. They may or may not see

themselves as extraordinary, but a lot of people see them as everyday heroes.

Personally, I also find squirrels incredibly extraordinary, the way they can

remember where all their nuts are stored, solve complex problems, rotate their

feet for optimal climbing, and are able to live in a variety of environments. I

doubt the squirrels see themselves as extraordinary, though. They’re probably just

thinking about nuts.

I don’t see myself as extraordinary. I’m just me. Doing the

best that I can with what life has given me. But extraordinary is a matter of

perspective. From my perspective, I’m living my life. If from someone else’s, I’m

doing what they would consider to be impossible and they see me as

extraordinary, there’s not much I can do to change it. Besides, if someone else

got to dictate what you personally are allowed to see as incredible, it wouldn’t

truly be your opinion or your hero.  I

think it’s important for people on both sides to not jump to conclusions about

the words, “I don’t know how you do it,” but also for people to think the words

through more before they use them. It is a phrase that is tired, well-used, and

has a tendency to come off as a general lack of understanding.

The next time you say it to someone, quantify it. Back it up with where it

comes from for you. I’m not going to tell my husband to stop admiring my

strength because when he admires all that I do in the face of a pain flare, his

words are an expression of love and respect. Words that just make me love him even more. There will always be things or

people that amaze us. As long as the speaker knows I’m just an ordinary person, doing my best, and

understands that it’s live or die for me, I think I can be ok with being called

extraordinary. 

 

 

Community Voices

What’s a tough but important decision you’ve made for your health?
#CheckInWithMe

It's often really hard for me to know what the "best" or "right" decision is for my health (and life in general I guess). One of the hardest decisions I've made for my health is taking time off school. I actually wrote a piece about how hard this was for me: To the College Student Who's Not Graduating When They're 'Su...

I still continue to make decisions every day that affect my health and well-being (hi, #ChronicIllness 👋). While I may never know if the decisions I'm making are the right ones, I'm trying to listen to what both my heart and body are trying to tell me.

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Community Voices

How do you accept or move on from wanting to die from Chronic Pain? I had 3 neck surgeries in 9 months often wished I just wouldn’t wake up.

My pain is finally reduced after the 3rd surgery but emotionally, mentally and physically I’m broken. I see a counselor but I hate and am scared that I hit such a bottom I wanted to die to be free of the pain.
#MightyTogether

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Community Voices
Sally Fowler

How Fake Service Dogs Hurt Real Service Dog Teams

We are drowning in a plethora of misinformation about service dogs and emotional support animals. Every week a new article about a fake service dog or an ESA on an airline gone wrong finds its way into the media. These stories tell one side of the story, while the truth remains invisible, working in silence, working without drawing attention, because that’s how trained dogs are supposed to behave. That’s how real teams are supposed to operate. Up until last night, I thought the worst side effects to this plague of misinformation and entitlement were the actual risks of an untrained dog hurting a person or a real working team, the unintended damage done to a pet who isn’t properly prepared for handling the stress of being in public, and the increase in frequency of real service dog teams or real ESAs being turned away from accommodations based on previous bad experiences with fakes. Last night, I realized there’s one more piece that adds to this conversation. As the ridiculousness smothers the real, the real is being lumped alongside the fake and everyone becomes a punchline. Real teams, real people who need their dogs for medical assistance are becoming jokes, and that’s not OK. The internet is a wonderful and terrible thing. It allows people to share information in the blink of an eye, and doesn’t necessarily scrutinize whether that information is true or false. As a result, there is a ton of information about service dogs and emotional support animals available online. The question then becomes, what do you believe? Who do you believe? There are people right now scamming anywhere from $60 – 100 dollars from ignorant people online by creating fake service dog registries that give out official-looking paperwork and ID cards, but don’t require any proof of training. Within minutes anyone’s dog can go from pet to service dog or pet to emotional support dog with a click of a button, or so they think. The Truth: It takes between 600 – 2000 hours to train a service dog to do its job, or about two years. Service dogs undergo extensive training to learn how to listen to their disabled handler in a wide array of situations, how to behave at home and in public, how to perform complex activities known as tasks to assist their disabled handler, and how to remain confident around all sorts of stimuli, scenarios, and environments. A person must be disabled in order to need and partner with a service dog The handlers (person with a disability) of service dogs are permitted access rights to any public space. This access permission is different from what’s given to therapy dogs or emotional support dogs. Therapy dogs are only permitted in certain public spaces and must have prior permission. Emotional support dogs are only permitted on flights, in non-pet housing, and sometimes doctor or therapist appointments. Under U.S. law, service dogs aren’t required to be registered or certified. Therapy dogs are required to be certified. Emotional support animals are not required to be registered or certified, but a doctor’s note is strongly encouraged and can be required in some situations. Service dogs have a specific function to perform. They work exclusively with a disabled person in managing that person’s medical condition. Therapy dogs are highly trained companions who offer support to strangers and assist communities in coping through difficult times. Emotional support animals/dogs are pets with very minimal rights for those who truly need the emotional comfort provided by the animal. Emotional support animals are not trained to do a specific function. They are not trained in how to be a working animal. They may help their owners, but they do so by existing, not from being rigorously trained to do so. The media perpetuates the cycle of misinformation every time they share a story about a fake ESA or fake service dog and don’t bother to provide their readers with accurate information. The media perpetuates the problem when they share stories about people who successfully parade an ESA all over town, declaring that they have the right to because they “need their dog.” They often don’t bother to research more about that person to determine the truth, and blatantly ignore the fact that owners of ESAs do not even have that kind of access permission. People are more likely to click on an article that seems outrageous and funny than one that is informative and possibly boring. There are plenty of real service dog stories circulating around, but they aren’t remembered as profoundly as the person who claimed they needed a peacock on their flight for emotional comfort or that funny scene on “Grey’s Anatomy” with a rogue ESA acting out. ​I’m not here to demean or criticize the needs of people with anxiety, depression, chronic pain, or other disorders who genuinely find solace in the presence of an emotional support animal, but don’t necessarily need the extensive level of help that comes from a service dog. Whoever you are, good for you for doing what you need to help take care of yourself. But I really hope you’re making smart decisions about how you utilize that golden ticket of “emotional support animal” and are keeping in mind the toll that being in public and being untrained will have on your pet’s own mental stability. I don’t read articles that talk about the newest outlandish animals someone is calling a service animal or an emotional support animal. They make me fume inside, which triggers stress and pain flares. Each time someone reads an article about a fake service dog, an outlandish emotional support animal, watches a show or movie that cracks jokes about people who must have their dog with them, or watches a show where people fake a dog as a service dog just to take it into a restaurant, the value of real service dog teams is being stripped away. The perception that there really are people out there who need a dog’s assistance is being eroded bit by bit. Sally getting help with sensory overload from her service dog. We Are Not Your Punchline There are thousands of real service dog teams all over the world. Right now there are thousands of dogs keeping their disabled handlers alive by helping them manage their various medical conditions. The man with epilepsy who relies on his service dog to alert to seizures before they happen so he has time to take medication or get someplace safe genuinely needs to take his dog everywhere with him. His needs are not funny or a desperate plea for attention. He is not a joke. The woman who relies on her guide dog to be her eyes, to help her navigate safely across the road without being hit or to bring her various items she needs to get through her day genuinely needs the aid of her guide dog. Her needs are not funny. She isn’t pretending to be blind so she can take her doggo everywhere. She is not a joke. I rely on my service dog to prevent pain flares before they strike, to prevent falls before they happen, and to be my hands when my body fails me. I live with a severe, perpetual nerve pain condition, called complex regional pain syndrome. I rely on my service dog to get me off the ground when my brain forgets I have legs, causing me to suddenly collapse. I rely on my service dog to pick up items I drop so an intense migraine or muscle spasms that could dislocate my jaw aren’t triggered when I try to bend over. I rely on my service dog to help me do simple activities like going for walks, doing laundry, bringing firewood into the house and more because without his help I would be bedridden. I know that for a fact, because before I had his help, I was bedridden. I was ensconced in chains that prevented me from living a half-way normal life; chains of unrelenting nerve pain. The pain is still there, but the chains weighing me down are gone. My service dog lifted those. I need my service dog to go everywhere with me because without his assistance, I could fall and be stuck on the ground unable to move. I wouldn’t be able to go up stairs in public buildings. I wouldn’t be able to open public doors. I wouldn’t be able to stand up after sitting for more than 20 minutes. I would be constantly getting bombarded with pain flare after pain flare until the chains wrapped around me again and forced me down once more. My needs are not a joke. My disability is not a joke. My service dog and his job are not a joke. I am not a joke. Sally’s service dog helps load the washing machine. Last night, I had the “privilege” of being in a room full of people who know I have a real service dog. They were making jokes at my expense because they think it is so preposterous to have to take your dog everywhere. They were even thinking of doing it themselves so they could take their dog everywhere too. Within moments, a family gathering that I was able to attend because of my service dog’s assistance turned from decent to sour. I became the punchline to a very cruel joke based in misinformation, lack of education, ignorance and a little bit of heartlessness. Some people think it’s laughable, the idea that someone would need to take a dog everywhere with them, and even that it sounds like fun. They don’t get that for many disabled people, it isn’t an option. It’s work with an assistance dog, go everywhere with your dog, or have no shot at life. Needing a service dog means your whole life is forever altered. They don’t get that one day it could very well be them who is disabled, or they could have a loved one who needs a service dog, because disability doesn’t discriminate. They don’t get that it means opening yourself up to harassment and interrogation from complete strangers demanding to know your medical history or your dog’s name. They don’t get that it means having a medical condition that likely involves being in horrible pain or living with limitations and restrictions that threaten to overwhelm you and all your dreams. They don’t get that lately it sometimes means being the butt of a joke. Real service dogs are lifelines. Real service dogs are literally helping to give disabled people like me a chance at a full life. They are lifting the chains that would otherwise force many disabled people to remain shut-ins. They are not a joke.

Sally Fowler

How Fake Service Dogs Hurt Real Service Dog Teams

We are drowning in a plethora of misinformation about service dogs and emotional support animals. Every week a new article about a fake service dog or an ESA on an airline gone wrong finds its way into the media. These stories tell one side of the story, while the truth remains invisible, working in silence, working without drawing attention, because that’s how trained dogs are supposed to behave. That’s how real teams are supposed to operate. Up until last night, I thought the worst side effects to this plague of misinformation and entitlement were the actual risks of an untrained dog hurting a person or a real working team, the unintended damage done to a pet who isn’t properly prepared for handling the stress of being in public, and the increase in frequency of real service dog teams or real ESAs being turned away from accommodations based on previous bad experiences with fakes. Last night, I realized there’s one more piece that adds to this conversation. As the ridiculousness smothers the real, the real is being lumped alongside the fake and everyone becomes a punchline. Real teams, real people who need their dogs for medical assistance are becoming jokes, and that’s not OK. The internet is a wonderful and terrible thing. It allows people to share information in the blink of an eye, and doesn’t necessarily scrutinize whether that information is true or false. As a result, there is a ton of information about service dogs and emotional support animals available online. The question then becomes, what do you believe? Who do you believe? There are people right now scamming anywhere from $60 – 100 dollars from ignorant people online by creating fake service dog registries that give out official-looking paperwork and ID cards, but don’t require any proof of training. Within minutes anyone’s dog can go from pet to service dog or pet to emotional support dog with a click of a button, or so they think. The Truth: It takes between 600 – 2000 hours to train a service dog to do its job, or about two years. Service dogs undergo extensive training to learn how to listen to their disabled handler in a wide array of situations, how to behave at home and in public, how to perform complex activities known as tasks to assist their disabled handler, and how to remain confident around all sorts of stimuli, scenarios, and environments. A person must be disabled in order to need and partner with a service dog The handlers (person with a disability) of service dogs are permitted access rights to any public space. This access permission is different from what’s given to therapy dogs or emotional support dogs. Therapy dogs are only permitted in certain public spaces and must have prior permission. Emotional support dogs are only permitted on flights, in non-pet housing, and sometimes doctor or therapist appointments. Under U.S. law, service dogs aren’t required to be registered or certified. Therapy dogs are required to be certified. Emotional support animals are not required to be registered or certified, but a doctor’s note is strongly encouraged and can be required in some situations. Service dogs have a specific function to perform. They work exclusively with a disabled person in managing that person’s medical condition. Therapy dogs are highly trained companions who offer support to strangers and assist communities in coping through difficult times. Emotional support animals/dogs are pets with very minimal rights for those who truly need the emotional comfort provided by the animal. Emotional support animals are not trained to do a specific function. They are not trained in how to be a working animal. They may help their owners, but they do so by existing, not from being rigorously trained to do so. The media perpetuates the cycle of misinformation every time they share a story about a fake ESA or fake service dog and don’t bother to provide their readers with accurate information. The media perpetuates the problem when they share stories about people who successfully parade an ESA all over town, declaring that they have the right to because they “need their dog.” They often don’t bother to research more about that person to determine the truth, and blatantly ignore the fact that owners of ESAs do not even have that kind of access permission. People are more likely to click on an article that seems outrageous and funny than one that is informative and possibly boring. There are plenty of real service dog stories circulating around, but they aren’t remembered as profoundly as the person who claimed they needed a peacock on their flight for emotional comfort or that funny scene on “Grey’s Anatomy” with a rogue ESA acting out. ​I’m not here to demean or criticize the needs of people with anxiety, depression, chronic pain, or other disorders who genuinely find solace in the presence of an emotional support animal, but don’t necessarily need the extensive level of help that comes from a service dog. Whoever you are, good for you for doing what you need to help take care of yourself. But I really hope you’re making smart decisions about how you utilize that golden ticket of “emotional support animal” and are keeping in mind the toll that being in public and being untrained will have on your pet’s own mental stability. I don’t read articles that talk about the newest outlandish animals someone is calling a service animal or an emotional support animal. They make me fume inside, which triggers stress and pain flares. Each time someone reads an article about a fake service dog, an outlandish emotional support animal, watches a show or movie that cracks jokes about people who must have their dog with them, or watches a show where people fake a dog as a service dog just to take it into a restaurant, the value of real service dog teams is being stripped away. The perception that there really are people out there who need a dog’s assistance is being eroded bit by bit. Sally getting help with sensory overload from her service dog. We Are Not Your Punchline There are thousands of real service dog teams all over the world. Right now there are thousands of dogs keeping their disabled handlers alive by helping them manage their various medical conditions. The man with epilepsy who relies on his service dog to alert to seizures before they happen so he has time to take medication or get someplace safe genuinely needs to take his dog everywhere with him. His needs are not funny or a desperate plea for attention. He is not a joke. The woman who relies on her guide dog to be her eyes, to help her navigate safely across the road without being hit or to bring her various items she needs to get through her day genuinely needs the aid of her guide dog. Her needs are not funny. She isn’t pretending to be blind so she can take her doggo everywhere. She is not a joke. I rely on my service dog to prevent pain flares before they strike, to prevent falls before they happen, and to be my hands when my body fails me. I live with a severe, perpetual nerve pain condition, called complex regional pain syndrome. I rely on my service dog to get me off the ground when my brain forgets I have legs, causing me to suddenly collapse. I rely on my service dog to pick up items I drop so an intense migraine or muscle spasms that could dislocate my jaw aren’t triggered when I try to bend over. I rely on my service dog to help me do simple activities like going for walks, doing laundry, bringing firewood into the house and more because without his help I would be bedridden. I know that for a fact, because before I had his help, I was bedridden. I was ensconced in chains that prevented me from living a half-way normal life; chains of unrelenting nerve pain. The pain is still there, but the chains weighing me down are gone. My service dog lifted those. I need my service dog to go everywhere with me because without his assistance, I could fall and be stuck on the ground unable to move. I wouldn’t be able to go up stairs in public buildings. I wouldn’t be able to open public doors. I wouldn’t be able to stand up after sitting for more than 20 minutes. I would be constantly getting bombarded with pain flare after pain flare until the chains wrapped around me again and forced me down once more. My needs are not a joke. My disability is not a joke. My service dog and his job are not a joke. I am not a joke. Sally’s service dog helps load the washing machine. Last night, I had the “privilege” of being in a room full of people who know I have a real service dog. They were making jokes at my expense because they think it is so preposterous to have to take your dog everywhere. They were even thinking of doing it themselves so they could take their dog everywhere too. Within moments, a family gathering that I was able to attend because of my service dog’s assistance turned from decent to sour. I became the punchline to a very cruel joke based in misinformation, lack of education, ignorance and a little bit of heartlessness. Some people think it’s laughable, the idea that someone would need to take a dog everywhere with them, and even that it sounds like fun. They don’t get that for many disabled people, it isn’t an option. It’s work with an assistance dog, go everywhere with your dog, or have no shot at life. Needing a service dog means your whole life is forever altered. They don’t get that one day it could very well be them who is disabled, or they could have a loved one who needs a service dog, because disability doesn’t discriminate. They don’t get that it means opening yourself up to harassment and interrogation from complete strangers demanding to know your medical history or your dog’s name. They don’t get that it means having a medical condition that likely involves being in horrible pain or living with limitations and restrictions that threaten to overwhelm you and all your dreams. They don’t get that lately it sometimes means being the butt of a joke. Real service dogs are lifelines. Real service dogs are literally helping to give disabled people like me a chance at a full life. They are lifting the chains that would otherwise force many disabled people to remain shut-ins. They are not a joke.

Sally Fowler

How Fake Service Dogs Hurt Real Service Dog Teams

We are drowning in a plethora of misinformation about service dogs and emotional support animals. Every week a new article about a fake service dog or an ESA on an airline gone wrong finds its way into the media. These stories tell one side of the story, while the truth remains invisible, working in silence, working without drawing attention, because that’s how trained dogs are supposed to behave. That’s how real teams are supposed to operate. Up until last night, I thought the worst side effects to this plague of misinformation and entitlement were the actual risks of an untrained dog hurting a person or a real working team, the unintended damage done to a pet who isn’t properly prepared for handling the stress of being in public, and the increase in frequency of real service dog teams or real ESAs being turned away from accommodations based on previous bad experiences with fakes. Last night, I realized there’s one more piece that adds to this conversation. As the ridiculousness smothers the real, the real is being lumped alongside the fake and everyone becomes a punchline. Real teams, real people who need their dogs for medical assistance are becoming jokes, and that’s not OK. The internet is a wonderful and terrible thing. It allows people to share information in the blink of an eye, and doesn’t necessarily scrutinize whether that information is true or false. As a result, there is a ton of information about service dogs and emotional support animals available online. The question then becomes, what do you believe? Who do you believe? There are people right now scamming anywhere from $60 – 100 dollars from ignorant people online by creating fake service dog registries that give out official-looking paperwork and ID cards, but don’t require any proof of training. Within minutes anyone’s dog can go from pet to service dog or pet to emotional support dog with a click of a button, or so they think. The Truth: It takes between 600 – 2000 hours to train a service dog to do its job, or about two years. Service dogs undergo extensive training to learn how to listen to their disabled handler in a wide array of situations, how to behave at home and in public, how to perform complex activities known as tasks to assist their disabled handler, and how to remain confident around all sorts of stimuli, scenarios, and environments. A person must be disabled in order to need and partner with a service dog The handlers (person with a disability) of service dogs are permitted access rights to any public space. This access permission is different from what’s given to therapy dogs or emotional support dogs. Therapy dogs are only permitted in certain public spaces and must have prior permission. Emotional support dogs are only permitted on flights, in non-pet housing, and sometimes doctor or therapist appointments. Under U.S. law, service dogs aren’t required to be registered or certified. Therapy dogs are required to be certified. Emotional support animals are not required to be registered or certified, but a doctor’s note is strongly encouraged and can be required in some situations. Service dogs have a specific function to perform. They work exclusively with a disabled person in managing that person’s medical condition. Therapy dogs are highly trained companions who offer support to strangers and assist communities in coping through difficult times. Emotional support animals/dogs are pets with very minimal rights for those who truly need the emotional comfort provided by the animal. Emotional support animals are not trained to do a specific function. They are not trained in how to be a working animal. They may help their owners, but they do so by existing, not from being rigorously trained to do so. The media perpetuates the cycle of misinformation every time they share a story about a fake ESA or fake service dog and don’t bother to provide their readers with accurate information. The media perpetuates the problem when they share stories about people who successfully parade an ESA all over town, declaring that they have the right to because they “need their dog.” They often don’t bother to research more about that person to determine the truth, and blatantly ignore the fact that owners of ESAs do not even have that kind of access permission. People are more likely to click on an article that seems outrageous and funny than one that is informative and possibly boring. There are plenty of real service dog stories circulating around, but they aren’t remembered as profoundly as the person who claimed they needed a peacock on their flight for emotional comfort or that funny scene on “Grey’s Anatomy” with a rogue ESA acting out. ​I’m not here to demean or criticize the needs of people with anxiety, depression, chronic pain, or other disorders who genuinely find solace in the presence of an emotional support animal, but don’t necessarily need the extensive level of help that comes from a service dog. Whoever you are, good for you for doing what you need to help take care of yourself. But I really hope you’re making smart decisions about how you utilize that golden ticket of “emotional support animal” and are keeping in mind the toll that being in public and being untrained will have on your pet’s own mental stability. I don’t read articles that talk about the newest outlandish animals someone is calling a service animal or an emotional support animal. They make me fume inside, which triggers stress and pain flares. Each time someone reads an article about a fake service dog, an outlandish emotional support animal, watches a show or movie that cracks jokes about people who must have their dog with them, or watches a show where people fake a dog as a service dog just to take it into a restaurant, the value of real service dog teams is being stripped away. The perception that there really are people out there who need a dog’s assistance is being eroded bit by bit. Sally getting help with sensory overload from her service dog. We Are Not Your Punchline There are thousands of real service dog teams all over the world. Right now there are thousands of dogs keeping their disabled handlers alive by helping them manage their various medical conditions. The man with epilepsy who relies on his service dog to alert to seizures before they happen so he has time to take medication or get someplace safe genuinely needs to take his dog everywhere with him. His needs are not funny or a desperate plea for attention. He is not a joke. The woman who relies on her guide dog to be her eyes, to help her navigate safely across the road without being hit or to bring her various items she needs to get through her day genuinely needs the aid of her guide dog. Her needs are not funny. She isn’t pretending to be blind so she can take her doggo everywhere. She is not a joke. I rely on my service dog to prevent pain flares before they strike, to prevent falls before they happen, and to be my hands when my body fails me. I live with a severe, perpetual nerve pain condition, called complex regional pain syndrome. I rely on my service dog to get me off the ground when my brain forgets I have legs, causing me to suddenly collapse. I rely on my service dog to pick up items I drop so an intense migraine or muscle spasms that could dislocate my jaw aren’t triggered when I try to bend over. I rely on my service dog to help me do simple activities like going for walks, doing laundry, bringing firewood into the house and more because without his help I would be bedridden. I know that for a fact, because before I had his help, I was bedridden. I was ensconced in chains that prevented me from living a half-way normal life; chains of unrelenting nerve pain. The pain is still there, but the chains weighing me down are gone. My service dog lifted those. I need my service dog to go everywhere with me because without his assistance, I could fall and be stuck on the ground unable to move. I wouldn’t be able to go up stairs in public buildings. I wouldn’t be able to open public doors. I wouldn’t be able to stand up after sitting for more than 20 minutes. I would be constantly getting bombarded with pain flare after pain flare until the chains wrapped around me again and forced me down once more. My needs are not a joke. My disability is not a joke. My service dog and his job are not a joke. I am not a joke. Sally’s service dog helps load the washing machine. Last night, I had the “privilege” of being in a room full of people who know I have a real service dog. They were making jokes at my expense because they think it is so preposterous to have to take your dog everywhere. They were even thinking of doing it themselves so they could take their dog everywhere too. Within moments, a family gathering that I was able to attend because of my service dog’s assistance turned from decent to sour. I became the punchline to a very cruel joke based in misinformation, lack of education, ignorance and a little bit of heartlessness. Some people think it’s laughable, the idea that someone would need to take a dog everywhere with them, and even that it sounds like fun. They don’t get that for many disabled people, it isn’t an option. It’s work with an assistance dog, go everywhere with your dog, or have no shot at life. Needing a service dog means your whole life is forever altered. They don’t get that one day it could very well be them who is disabled, or they could have a loved one who needs a service dog, because disability doesn’t discriminate. They don’t get that it means opening yourself up to harassment and interrogation from complete strangers demanding to know your medical history or your dog’s name. They don’t get that it means having a medical condition that likely involves being in horrible pain or living with limitations and restrictions that threaten to overwhelm you and all your dreams. They don’t get that lately it sometimes means being the butt of a joke. Real service dogs are lifelines. Real service dogs are literally helping to give disabled people like me a chance at a full life. They are lifting the chains that would otherwise force many disabled people to remain shut-ins. They are not a joke.