Marcia Lee Aulebach-Lagomarsino

@marcialeeaulebachlagomarsino
Mlee Parkinson's group VA
Erin Migdol

21 Things That Seem Obvious About Chronic Illness, but Aren't

Since many people have at least heard of chronic illnesses like fibromyalgia, Crohn’s disease, Lyme disease, etc., you’d think there would be some basic truths about chronic illness in general that people would understand. But people who live with chronic illnesses know from the questions and comments they get on a regular basis that the general public actually doesn’t know a lot of seemingly obvious realities of chronic illness (if the number of people who ask you when you’ll “get better” is any indication…). Last week, graphic designer Louie Mantia posted a question on Twitter: “What’s something that seems obvious within your profession, but the general public seems to misunderstand?” While he focused his question on careers, we thought the question would apply perfectly to chronic illness, too. So we asked our Mighty community to share something about chronic illness that seems obvious, but people always seem to misunderstand. In order for our friends, family and the general public to support this community, they should at least be educated on these “obvious” realities. Let us know in the comments if you have any “truths” to add. “There is no break. I’m always operating with some high level of pain, usually in more than one spot, and I don’t get enough sleep/rest of top of it, which makes it worse and creates a cycle. And where I live in the south, the weather can be horrible one day and send me into a flare for weeks.” — Jenn W. “It doesn’t end! I know that sounds pretty obvious, but people honestly think you should be getting better. In a ‘regular life’ they get sick, or hurt, take some time and they get better. They do things to help symptoms, or speed recovery even, and it just happens, they return to ‘normalcy.’ This is ingrained in us from a very early age. I think that even people with chronic illness deal with this, on a very primal level, sometimes without even realizing it. ‘If I just do this/don’t do this I will get better’ echoes around in my brain, over and over, even though I know logically this is not true. But I am not sure how to educate the general public about it, when we the sufferers have not even really grasped it.” — Terri T. “When someone with chronic illness says that they are tired, it means something very different than when someone without chronic illness says the same thing. There is no guarantee that our energy will be replenished after sleeping.” — Ami C. “ I am unable to work because I’m just exhausted all the time. But, I still have two children who I have to run around, prepare meals for, do laundry and try to rest in between. Most people think just because I don’t actually go out to work and stay home, that I do nothing! Staying home and having one or more chronic illnesses is like false advertising! It’s like telling the uninformed general public that staying home due to a chronic illness is a luxury!” — Lisa G. “I’ve been told ‘You should have a plan, you’re 24,’ but how am I supposed to have plan when I have no idea when or even if I’ll be better enough to go to school full-time or support myself? People don’t always seem to understand how difficult it is to plan ahead when your future and abilities are a big question mark.” — Bailey CK “When I tell people I have fibromyalgia, they assume it’s just pain I deal with. When I begin to talk about other symptoms they seem shocked that I go through so much with having fibromyalgia.” — Letia N. “Just because I’m not limping or struggling walking into the store from my [accessible] parking space, doesn’t mean I won’t be on the way out.” — Merri S. “Being on disability isn’t fun. I don’t get a lot of money like people must think. It’s struggling each month to pay your bills. It’s worrying if they may take your benefits for whatever reason at any time. It’s having to report small changes. It’s a loss of independence and the ability to provide for yourself. It’s a reminder of just how limited you are now. Chronic illness is lonely, isolating and debilitating.” — Marissa R. “After a diagnosis of chronic illness, you are still the same person, just with a new reality to deal with. We still have dreams and goals, likes and dislikes, personalities and idiosyncrasies. Chronic illness doesn’t suddenly wipe away the person that you are, it just means you have to adapt to a new reality so that you can continue being the person you always were. That often requires accommodation and assistance that looks different than it does for healthy people, but let’s not pretend that healthy people do everything on their own with no assistance or accommodation.” — Laura J. “Putting on a brave face in public is tiring and sometimes frustrating. But I don’t do it for you, I need to feel ‘normal’ sometimes, even if the consequences are dire.” — Chris K. “Just because I work a full-time job and can manage going to appointments and therapies pretty well on my own doesn’t mean I’m doing OK. I am putting every ounce of effort into managing my diseases and conditions. I’m still struggling, I just put on a game face so I can provide for myself and make ends meet.” — Amelia H. “Just because I post happy photos on social media, that doesn’t mean I really feel good. We all have good moments, and who wants to post photos of themselves lying in bed with a miserable frown on their face? Like that would go over well. So you’re damned if you do (post happy photos), and damned if you don’t.” — Stacey A. “Chronic does not mean incapable. It is insulting and frustrating for people to assume that because we are ill we need help, we cannot do things for ourselves, or we are unable to think or make decisions.” — Gwendolyn A. “The public needs to believe people with chronic conditions. I see so many ill people suffering deeply because their families and others in their life think it’s not real, just because they can’t see it. They can’t see what our bodies are doing internally. They think I can do anything a healthy person could do. I know they can’t possibly understand something they have never experienced, but I wish more would try to empathize. I don’t want pity, just realization of my limitations.” — Sheila W. “I already considered and most likely also already tried pretty much all the things they come up with as ‘solutions for the problem.’ Also: that sometimes I just want to be able to tell somebody the truth when they ask me how I feel, without actually asking for absolute pity or a solution!” — Inge V. “What works for one person won’t necessarily work for another. Just because a certain diet or supplement worked for one person, doesn’t mean it’ll work for another. We can be trusted to determine what is worth trying and what isn’t, and we don’t owe anyone an explanation either way.” — Phoebe B. “That medication is the magic ‘fix it all’ button. For example (having fibromyalgia), the Lyrica commercials portray that someone who takes the med can suddenly go to amusement parks and do all this physical activity and be fine, when that isn’t the reality of living in constant chronic pain.” — Kaitlyn Y. “When I say I can’t do something, it really means I can’t do something. I work hard every day to keep myself going, so on off days I really do need to stop, so don’t make me feel guilty for doing so.” — Gina N. “With chronic conditions that affect immune systems, something they catch which means they’re in bed for a few days can put us in the hospital or worse.” — Sarah C. “It takes months to see specialists and then months to get a plan and course of treatment going that works. You can’t walk into an office and walk out feeling 100 percent better, it takes months and pushing your body to its limit to ‘get better.’” — Raya D. “Empathy. Just because you do not share my or others’ experiences regarding chronic illness or pain does not mean you cannot show kindness, compassion and support. This is so much harder for people than I ever realized.” — Amy M.

Ehlers-Danlos Syndrome: Receiving Judgment With Invisible Illness

The Dysautonomia Support Network, in honor of EDS/HSD Awareness Month, is doing a daily my awareness/my story challenge. When I was adding my little story to Facebook for the challenge, I realized that this one hit a nerve pretty hard. Day five: Describe how invisible illnesses EDS/HSD subject you to judgment from strangers, friends and family. This is one I could have done a video of because it’s one of those that hurts your heart. I’d just be a blubbering mess though. When you constantly say you’re in pain, people stop listening. They get tired of it. Then they judge you for it. In high school, my teachers judged me. They didn’t believe that I was very ill. Really in pain. Even when the principal had to call 911 because I collapsed in the middle of the hall and had be taken to the hospital, they still didn’t believe me. I clearly remembered two teachers who told me I wouldn’t make anything out of my life because of my “so-called illness.” Friends and family get tired of canceled plans. They may not even realize they are judging me for it. I can understand that they get sick of making plans and then last minute (very last minute) things have to change. It’s one of the ways I’ve lost so many friends. Lost so many connections. Work. Work is the hardest. Your coworkers judge you for being out even when you work from home, plus doing an extra four hours a day to make sure no one has to cover your job. Your managers, especially those micro-managers, get tired and stop believing you’re in pain. They stop believing you’re at doctor appointments, physical therapy, etc. It gets worse when you have that one good day and you’re able to dress to impress, wear a full face of make-up and do your hair – they don’t understand why you’re not “on the ball every day,” though they have seen you go from a stellar employee to trying to survive each day. They go from friend to manager to enemy. They don’t understand how hard it is to have to physically call them when you’re on your way to the ER at 4:00 a.m. Then when you do – and you’re sobbing or barely able to bring together a coherent sentence – they think you’re acting “childish” or “overly dramatic.” An email won’t do. A text doesn’t satisfy their needs anymore. They manage your FMLA down to the minute as if you’re trying to steal time. They decide that you are faking it or become ridiculously suspicious when you can do some work at 3:00 a.m. because you are unable to sleep and might as well try to cover your job. And I haven’t even talked about the judgment you get from others if you happen to use your disabled parking permit on bad days. Some days it takes everything to just walk from your parking spot to the front door. You’re young and maybe not in a wheelchair – you don’t “look sick.” Luckily I have not had any nasty conversations or received notes on my car but the fear is there every time I use it. Wow. I guess this one meant a lot to me. The judgment hurts. Mainly because I can’t help being sick. They may understand, but it still hurts them since I cancelled. We have to remember others’ feelings too while still taking care of ourselves. It’s a delicate balance. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Wavebreakmedia.

Tessa Hearth

My Ability to Function With Chronic Illness Says Nothing About My Pain

I’d like to tell you the story about two women. The first was in her early 20s at the time, had severe chronic migraine and fibromyalgia . She had three young children, one of whom with her own set of medical diagnoses, as well as developmental delays. She hurt every single day. Her pain was often an eight, nine or ten on the hated pain scale. She was always exhausted. Not “tired,” not “sleepy,” but exhausted . She frequently described the worst of the fatigue days as feeling like she was walking through molasses with weights strapped to her legs. She was constantly coming down on herself because she was terrified her children would only remember how sick she was as they grew up, and they would miss out on their childhoods because of her health. Her husband was incredibly supportive, but his job frequently took him away for extended periods. His bosses were not at all understanding, and any time he had to ask for time off work to help her or their child get to an appointment, he would catch no end of hell. She was frequently told it was in her head, or accused of making it up to manipulate her husband’s schedule so he would stay home. When they initially started having children, her husband and her had decided they both wanted her to be able to stay home with the kids when they were young. As time passed, it became obvious it was also necessary for her health. That she would not be able to work even part-time, due to her pain and fatigue. A few hours at the beach with her kids would land her on the couch for a week at a time, or longer. Standing for any length of time caused severe pain in her legs and back, and left her limping for weeks. Very few people saw the extent of her pain, she hid it even from most friends. She was frequently completely unable to function, often spending days and weeks between trying to live a normal life half-comatose on the couch while her young children watched TV, just awake enough to make sure they were safe. She knew this was not a workable long-term solution, that it was not healthy for her or her children. She felt like the worst parent on the planet, constantly. But every time she asked for help from physicians, she was met with disbelief. Her symptoms and the severity of their impact on her life were blatantly ignored. She was “too young,” she was “just depressed.” She tried for years. Begged for help. At the time, fibromyalgia was just getting real traction as a recognized condition, and more people believed it was a made-up condition than not. Nobody had a direction for her, nobody had viable treatment options. After a while, she just stopped asking. She stopped talking about it. The second woman in this story is in her late 30s. She has chronic migraines, fibromyalgia, lupus, Sjogrens syndrome, arthritis and several spinal injuries. She hurts every single day. Her pain is frequently an eight, nine or ten on the same hated pain scale. She often describes her fatigue as crushing. She also has three children, though they are older. Two of her children have high medical needs, as well. She has had better luck with physicians, and has managed to find a team of doctors who listen, who appropriately present and discuss treatment options and take her symptoms seriously. Because of this, she has been able to gain a direction to take her treatment, but is still learning to manage her conditions. She works full-time, and often longer than full-time hours, out of necessity. She spends her days in meetings, on the phone, in appointments and doing paperwork. She wakes up exhausted and in significant pain, spends the entire day hoping she can make it to the end of it, while at the same time knowing by pushing herself, she is perpetuating a very damaging cycle for her health. But because she has to, she gets up and gets dressed. She makes it to her meetings and appointments. One by one, she checks off items on her daunting to-do list, always having to prioritize things that are the most important and the most time-urgent. She has a terrible memory, and frequently forgets details of conversations, sometimes within minutes of the conversation. But because of her job, she has to remember certain things, so she has learned to use tools to help her. By midway through the day, her pain has spiked. Brain fog has set in, but she still has hours of her day left to get through. By the end of the day, she usually collapses on the couch, hoping she can do enough to manage her pain so she has a chance of sleeping that night. She has to remind herself to stretch and move gently, because she knows she will be worse off if she doesn’t. If she has the energy, she will soak in the tub before bed. Most days, she doesn’t have the energy. Up the next day to rinse and repeat. People know she has health issues, and she frequently gets asked questions like, “How do you do it?” Or told things like, “But you look so good!” And, “My other friend has lupus, too, but theirs is worse.” She gets complimented on her organization skills, and people often come to her for help with things because she’s known to be a good critical thinker, or because it’s something she deals directly with in her job so they know she is a good resource. People often only see how functional she is, and they miss the reasons behind why she has to function, as well as the struggle she’s gone through to get to where she is at. They see the results of her ability to push through and function, and not the price she pays. Surprise… both women are me. I’m still the same woman in both stories. I still have high levels of pain and fatigue every day. The same pains and fatigue that rendered me nonfunctional 18 years ago have become the expectation for daily life. I wake up, and my first conscious thought is pain. If I can manage to get to sleep, I dream of pain. Every moment, of every day. My pain didn’t get better. In fact, over the years, it’s gotten worse, with a wider variety in types of pain. My fatigue has continued to be debilitating. I still describe it as walking through molasses with weights strapped to my legs many days. On top of having a hectic enough schedule to make a fully healthy adult exhausted, I have to go through my day and try my best to mitigate things that will aggravate my pain and fatigue. Which ironically, takes additional precious energy. Some days, I am more successful than others. Some days, I fail utterly, and pay the price. Life didn’t stop because I had chronic pain. It didn’t stop because I needed a week-long nap. Not wanted. Needed. So, what changed? Simple, and not so simple. I learned to utilize every possible tool around me. I learned to use reminder lists and shared calendar events for appointments, to compensate for my terrible memory. I’ve learned to navigate the insurance and medical systems, because it was that or pay thousands upon thousands in medical bills. I’ve learned coping mechanisms. They don’t change the degree of my pain, but they do help me get through the things that I have to do. Unfortunately, this also means many people don’t see the toll it takes. They see me appearing to function at a high level. They didn’t know me when I wasn’t functional. They don’t see the decades of physical, emotional and psychological struggle it took to get here, and they don’t see that my ability to “push through” has actually become a detriment to my health. That struggle continues. I’m in the fight of my life, and most people in my life have no idea. The truth is, I actually need to be significantly less functional, for the sake of my organs and my sanity. Even if you share the same condition with someone, their experiences and yours may be similar, but each is unique and individual. We are all at different stages with our illnesses, and we each cope differently. Don’t tell your friend with chronic illness that your cousin’s friend’s daughter had this, too, and theirs was worse. Don’t joke they should just “suck it up,” because I can pretty reliably guarantee you they already are. Don’t tell them because they’re functional, they’re healthier than Joe next door. Even within the chronic illness community, I have encountered this. Because the hard truth is… you have no idea.  Remember always that what you see is the surface. This is true of life in general. And what you see on the surface is never the whole story. Be kind.

Tessa Hearth

My Ability to Function With Chronic Illness Says Nothing About My Pain

I’d like to tell you the story about two women. The first was in her early 20s at the time, had severe chronic migraine and fibromyalgia . She had three young children, one of whom with her own set of medical diagnoses, as well as developmental delays. She hurt every single day. Her pain was often an eight, nine or ten on the hated pain scale. She was always exhausted. Not “tired,” not “sleepy,” but exhausted . She frequently described the worst of the fatigue days as feeling like she was walking through molasses with weights strapped to her legs. She was constantly coming down on herself because she was terrified her children would only remember how sick she was as they grew up, and they would miss out on their childhoods because of her health. Her husband was incredibly supportive, but his job frequently took him away for extended periods. His bosses were not at all understanding, and any time he had to ask for time off work to help her or their child get to an appointment, he would catch no end of hell. She was frequently told it was in her head, or accused of making it up to manipulate her husband’s schedule so he would stay home. When they initially started having children, her husband and her had decided they both wanted her to be able to stay home with the kids when they were young. As time passed, it became obvious it was also necessary for her health. That she would not be able to work even part-time, due to her pain and fatigue. A few hours at the beach with her kids would land her on the couch for a week at a time, or longer. Standing for any length of time caused severe pain in her legs and back, and left her limping for weeks. Very few people saw the extent of her pain, she hid it even from most friends. She was frequently completely unable to function, often spending days and weeks between trying to live a normal life half-comatose on the couch while her young children watched TV, just awake enough to make sure they were safe. She knew this was not a workable long-term solution, that it was not healthy for her or her children. She felt like the worst parent on the planet, constantly. But every time she asked for help from physicians, she was met with disbelief. Her symptoms and the severity of their impact on her life were blatantly ignored. She was “too young,” she was “just depressed.” She tried for years. Begged for help. At the time, fibromyalgia was just getting real traction as a recognized condition, and more people believed it was a made-up condition than not. Nobody had a direction for her, nobody had viable treatment options. After a while, she just stopped asking. She stopped talking about it. The second woman in this story is in her late 30s. She has chronic migraines, fibromyalgia, lupus, Sjogrens syndrome, arthritis and several spinal injuries. She hurts every single day. Her pain is frequently an eight, nine or ten on the same hated pain scale. She often describes her fatigue as crushing. She also has three children, though they are older. Two of her children have high medical needs, as well. She has had better luck with physicians, and has managed to find a team of doctors who listen, who appropriately present and discuss treatment options and take her symptoms seriously. Because of this, she has been able to gain a direction to take her treatment, but is still learning to manage her conditions. She works full-time, and often longer than full-time hours, out of necessity. She spends her days in meetings, on the phone, in appointments and doing paperwork. She wakes up exhausted and in significant pain, spends the entire day hoping she can make it to the end of it, while at the same time knowing by pushing herself, she is perpetuating a very damaging cycle for her health. But because she has to, she gets up and gets dressed. She makes it to her meetings and appointments. One by one, she checks off items on her daunting to-do list, always having to prioritize things that are the most important and the most time-urgent. She has a terrible memory, and frequently forgets details of conversations, sometimes within minutes of the conversation. But because of her job, she has to remember certain things, so she has learned to use tools to help her. By midway through the day, her pain has spiked. Brain fog has set in, but she still has hours of her day left to get through. By the end of the day, she usually collapses on the couch, hoping she can do enough to manage her pain so she has a chance of sleeping that night. She has to remind herself to stretch and move gently, because she knows she will be worse off if she doesn’t. If she has the energy, she will soak in the tub before bed. Most days, she doesn’t have the energy. Up the next day to rinse and repeat. People know she has health issues, and she frequently gets asked questions like, “How do you do it?” Or told things like, “But you look so good!” And, “My other friend has lupus, too, but theirs is worse.” She gets complimented on her organization skills, and people often come to her for help with things because she’s known to be a good critical thinker, or because it’s something she deals directly with in her job so they know she is a good resource. People often only see how functional she is, and they miss the reasons behind why she has to function, as well as the struggle she’s gone through to get to where she is at. They see the results of her ability to push through and function, and not the price she pays. Surprise… both women are me. I’m still the same woman in both stories. I still have high levels of pain and fatigue every day. The same pains and fatigue that rendered me nonfunctional 18 years ago have become the expectation for daily life. I wake up, and my first conscious thought is pain. If I can manage to get to sleep, I dream of pain. Every moment, of every day. My pain didn’t get better. In fact, over the years, it’s gotten worse, with a wider variety in types of pain. My fatigue has continued to be debilitating. I still describe it as walking through molasses with weights strapped to my legs many days. On top of having a hectic enough schedule to make a fully healthy adult exhausted, I have to go through my day and try my best to mitigate things that will aggravate my pain and fatigue. Which ironically, takes additional precious energy. Some days, I am more successful than others. Some days, I fail utterly, and pay the price. Life didn’t stop because I had chronic pain. It didn’t stop because I needed a week-long nap. Not wanted. Needed. So, what changed? Simple, and not so simple. I learned to utilize every possible tool around me. I learned to use reminder lists and shared calendar events for appointments, to compensate for my terrible memory. I’ve learned to navigate the insurance and medical systems, because it was that or pay thousands upon thousands in medical bills. I’ve learned coping mechanisms. They don’t change the degree of my pain, but they do help me get through the things that I have to do. Unfortunately, this also means many people don’t see the toll it takes. They see me appearing to function at a high level. They didn’t know me when I wasn’t functional. They don’t see the decades of physical, emotional and psychological struggle it took to get here, and they don’t see that my ability to “push through” has actually become a detriment to my health. That struggle continues. I’m in the fight of my life, and most people in my life have no idea. The truth is, I actually need to be significantly less functional, for the sake of my organs and my sanity. Even if you share the same condition with someone, their experiences and yours may be similar, but each is unique and individual. We are all at different stages with our illnesses, and we each cope differently. Don’t tell your friend with chronic illness that your cousin’s friend’s daughter had this, too, and theirs was worse. Don’t joke they should just “suck it up,” because I can pretty reliably guarantee you they already are. Don’t tell them because they’re functional, they’re healthier than Joe next door. Even within the chronic illness community, I have encountered this. Because the hard truth is… you have no idea.  Remember always that what you see is the surface. This is true of life in general. And what you see on the surface is never the whole story. Be kind.

Finding Joy When Illness Means Life Doesn't Go the Way You Want

I will tell you a secret. Life (almost) never goes how you want. I learned this at the wise old age of 13. Suddenly, I no longer was who I had planned to be. I no longer would be able to run again, I would have to go through high school having waist down reconstruction surgeries, and I would treasure each new step like it was my first. I have learned so much about how people never treasure things until they are gone. I saw it with my brother when he had to endure a life-altering and a life-taking accident. I saw it when my mom got a kink in her back and didn’t move as easily. And I have felt it in everyone during this epidemic. I have been almost completely homebound since I was a senior in high school. And that wasn’t because I was healing from my surgeries. I learned long ago how to deal with being stuck at home with little to entertain you after years of friends, parties and shopping. The frustration you feel. The complete lack of control and the tears that you don’t really know what is coming. The difference was that I was forced to stay at home, in bed even. I was forced by my own body to become a hermit. It is so sad knowing the majority of your friends won’t check in on you when you are unable to text back. The first thing that was taken from me was my hands. As a senior, I had to have my parents come to school with me so that they could write for me on the tests I had to take. The writing on my last finals? My dad wrote them for me. The heart-wrenching pain when you can’t do a gosh dang thing about what is happening to your crashing world is unexplainable. You don’t get it until you have overcome it. And that is the thing, you don’t just overcome it within a few months, it can keep coming back each time you ponder how different and perhaps even lacking your new life is. You don’t realize the love you have for things until their dependability suddenly stops. I had to relearn how to walk at the age of 15. Ever since I am grateful of the steps I take. As I say my nighttime prayers, I always am grateful for walking. My family couldn’t understand when, after months of being in a wheelchair and struggling to walk, I still couldn’t walk, and that was when the panic attacks began. I couldn’t understand it. It was an hour of pure terror and this incredible knowledge that I would never be able to walk again. I sobbed for that long hour when I was on vacation with my family, supposed to be having fun, supposed to be enjoying myself. But I was surrounded by people who didn’t have a clue what my life was like, and they didn’t understand pain like I did. I hated each time they told me to “put on a happy face” as if I was being overly dramatic after having my legs broken in eight places and twisted to be straight. They had no clue. Looking back, I can give forgiveness easily. People — no matter how empathetic — cannot understand what they have not experienced. People think “I broke a finger once, I understand pain.” Or “I had to stay home for a few months when I was really sick, I understand being home/bedbound.” But that is only a taste of what life is like. Just a little niggling in the mind that makes you think, “Wow when I was sick I was so miserable, life is so much better when I am healthy.” Those little thoughts that we appreciate what we have because we didn’t have it once. I’ve learned life is not about all the things we do or accomplish that we can show off to everyone. Life is not about accolades or how much money you have in the bank or your wallet. Life is about what you accomplish in your heart, mind and soul. Some of the happiest people have the least amount of things. They appreciate every little thing that comes because they have not only been without, but they know the worth of things as they are. For me, raspberries my selfless parents buy for me are treasures I savor and thank God for each time. A simple moment when my dog makes me laugh when no one is looking is a gift from the universe. Happenings in the world don’t affect me as much as others. Not just because I am still stuck at home in my bed all these eight years later with a fading body that can’t do what I need because of excruciating pain. But because I’ve found that not only does life not even remotely go the way you want (in fact I have found it tends to take you through your greatest fears) but actually, life takes you where you need to go. If we live life to the fullest, no regrets, nothing can really touch our peace. I don’t mean living life to the fullest based on your wants. I mean living life to the fullest because the things most worth our time are often the things that serve others. Savoring family, being there for a friend when they need you most, treasuring food on the table and a full fridge. Even savoring each step you are able to take. It is true we never realize what we had until it is gone, but if we treasure all the important things and live searching for the gifts we all are given, regret will be a word we happily will struggle to understand.

Woman Responds to Stranger Who Asked If She Forgot Her Wheelchair

Justine Van Den Borne, 41, was diagnosed with secondary-progressive multiple sclerosis at the age of 35, and though many of her symptoms aren’t yet visible, she knows that won’t always be the case. Unfortunately, Van Den Borne can’t explain this to everyone who sees her, and she’s been targeted a number of times for using handicapped parking spots near her home in Melbourne, Australia. People with secondary-progressive multiple sclerosis (SPMS) experience symptoms such as fatigue, muscle stiffness, pain, difficulty with mobility, cognitive issues and bladder problems, according to the National Multiple Sclerosis Society. There’s no cure for the disease, and it’s progressive. After shopping with her daughter at a local mall last week, Van Den Borne was upset to see someone left a nasty note on her windshield that read, “Did you forget your wheelchair???” Van Den Borne posted a photo of the note and wrote a lengthy post on Facebook in response. The post currently has over 25,000 likes on her page and has been shared nearly 5,000 times. To person that left this on my car last week at Mitcham Shopping Centre- I was diagnosed with Multiple Sclerosis when I…Posted by Justine Van Den Borne on Monday, November 9, 2015 “I am sick of people like yourself abusing me on my good days for using a facility I am entitled to,” Van Den Borne wrote. “A disability doesn’t always mean a person has to be wheelchair bound but lucky for you I one day will be… Before you ruin another persons (sic) day remember you don’t know everything and just because you can’t see it doesn’t mean a person isn’t struggling to put one foot in front of the other.” “Because of my age, [people] look at me, and automatically presume I'm doing the wrong thing,” Van Den Borne told Australian news outlet The Age. “But actually I can't carry my own shopping, can't walk long distance, I have the bladder of an 80-year-old.” Hopefully, her viral response will ensure incidents like this happen less frequently.

Community Voices
Liz Bernstein

What I Want You to Know About Being a Service Dog Handler

They see his fur first, then they see his face. The awkward smiles start. The “ooos” and “aws” follow. Then they begin to speak to him in a higher-pitched voice. Parents point him out to their uninterested children, saying, “Look at the doggie!” As if they had never seen a dog before. Some even try to pet him without asking. Then you have the individuals who scream (literally) when they see him. None of them really notice the individual on the other end of the leash. I hold my hand up and say, “Please don’t. He’s working.” They suddenly notice me and give me a look of shock, disdain or repulsion. Some even become combative because I don’t want them speaking to or petting my service dog. Liz’s service dog Mac This is a normal day in the life of a service dog handler. People will randomly come to you and try to interact with your dog. They unknowingly or don’t care that by distracting the dog, they are putting the handler in immediate danger. If you see a service dog team in a public place, they are most likely there for the same reason as you. Service dog handlers do not allot the extra time that is needed to allow everyone to say hello to their dog. Many of us just want to get what we need done and go on with our day. Service dogs are legally medical equipment under federal and state laws. A service dog goes through 1.5 to 2.5 years of intense and specific training in order to mitigate their handler’s disability. You must be disabled in order to utilize a service dog. In many states, they fall under the white cane law. While they are an optional piece of medical equipment, they are helpful in some cases. Emotional support animals and therapy dogs are not service dogs and are not covered under the Americans with Disabilities Act. And no matter how much you pay for an ID or vest on a website, it does not make your animal a service animal! Service dogs are medical equipment when they are working. They need to pay attention to their handler and be able to perform the tasks they have been trained to. Tasks are based on the handler’s needs, not wants. Legitimate tasks include opening and closing doors/cabinets, retrieving dropped or named items, guide work, pulling a wheelchair, blood glucose changes detection, deep pressure therapy, etc. “Just being there,” “cuddles/comfort” and tethering a child to a dog are not tasks. Service dogs must be proficient in advanced obedience, public access training and task training. These dogs cost thousands of dollars to train and maintain. They can range from $10,000 to $50,000 to train. Even owner training is expensive. I have about $25,000 in my current service dog and $9,000 in my service dog in training. Liz’s service dog in training, Linc These dogs are not pets under the law. They do get to enjoy life and have time off. Many handlers participate in extracurricular activities such as obedience competitions, agility (there are many videos of handlers in wheelchairs participating in this sport), rally-o, etc. Service dogs must be in tip-top shape when working. They must be clean and healthy. In my experience, i t is frowned upon in the service dog community to work a dog with a disability of their own. Service dogs rely heavily on their senses (sight, hearing, smell and at times touch) in order to work and assist their handlers appropriately. So, when you distract a service dog, they are no longer able to perform the tasks they need to. So next time you see a service dog team, please do not make any sounds toward the dog and handler and do not try to pet a working dog. It is rude and very dangerous for the handler if you do. You should also never touch an animal you don’t personally know or don’t have permission to touch. We are not a walking petting zoo. Please respect us as a team and allow us to go on with our day. For more information about service animals: Frequently Asked Questions About Service Animals and the ADA U.S. Department of Justice: Service Animals Service Dog Central Disclaimer from the author: The breed shown in this article is not normally trained for service dog work due to their natural instincts. The author of the article has over 10 years of canine training experience and understands canine body language and behavior. Choose the dog breed based on your disability(ies) and your needs, not on the look of the dog. The dogs in the article were chosen based on the author’s needs, not looks. This article does not back any trainers or organizations; all information provided is to educate about service dogs. Follow this journey on Liz’s blog.