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When I Asked 25 Kids With Ehlers-Danlos Syndrome What Their Lives Are Like

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At least three of my four kids have Ehlers-Danlos syndrome (EDS), which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.

Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises.

But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder.

Averie, 10 years old (hEDS) – “The hardest part is telling other kids that I can’t do certain things, like play on the monkey bars, or do everything that my classmates are doing in gym class. EDS hurts a lot. It’s frustrating that you can’t do as much as your friends, and that postural orthostatic tachycardia syndrome (POTS) is really frustrating because I just have to explain myself more when I’m getting up more slowly than others, and having to draw attention to myself.”

Anonymous, 7 years old – “I feel stretchier. It makes me feel like I’m the special kid. It’s because I have something that other people don’t and that’s why I’m feeling that way. It affects, like, sometimes I try to run and then part of my body hurts and then I stop.”

Anonymous, 6 years old – “I just feel like I’m extra good at gymnastics, and I wonder why other kids don’t have their knees ‘fall off’ like mine.”

Kyle, 9 years old (hEDS) – “It doesn’t really bother me, it just makes me who I am. The only thing I really hate is when I go dizzy and fall.”

Harriet, 8 years old (hEDS) – “Unhappy. I want to be normal. It’s horrible being in constant pain and it’s very unfair. I shouldn’t have to deal with all this at such a young age. It is spoiling my childhood.”

Nicholas, 11 years old (hEDS) – “Awkward and painful.”

Charlotte, 4 years old (hEDS) – “I fall over loads, and I’m always tired. I wish I could run about like my friends without pain.”

Nicole, 17 years old (hEDS) – “I hate life. I’m constantly in pain, and I want to be like my friends. I hate that no one believes me (apart from family, close friends, and Professor Grahame) and I want to be able to work and earn money like my friends.”

Dylynn, 11 years old – “I hate being clumsy, and I hate the knee braces, but I love the aqua therapy.”

Kaitlyn, 16 years old (hEDS) –  “I’m lonely and in pain, nauseous, weak, extremely fatigued and foggy headed, dizzy and feel like passing out. I haven’t been to school in three months. I’m tired of it all!”

Brandi, 6 years old (hEDS) – “It’s not bad. When my hands and feet are sleepy (numb) is what I hate the most. Oh, and my legs. They stay tired a lot.”

Sebastian, 5 years old (hEDS) – “I don’t like it. I wish I didn’t have pain. It’s not fun, and my medicine is gross.” You can follow Sebastian’s journey at My Sweet Zebras.

Jack, 7 years old (hEDS) – “I don’t like that I’m so different and can’t keep up with my class. It makes them be mean to me sometimes because I’m not as fast as them and I can’t play football or ride a bike like everyone else. I don’t like being in pain and tired all the time or having to take medicine every day, especially when it doesn’t work.”

Jessica, 4 years old (cEDS) – “It’s too many doctors. I hate my boots (AFO braces). I’m tired of getting hurt.”

Kyler, 7 years old (cEDS) – “It’s pain. I want to run with my friends and play sports. But it hurts.”

Simara, 12 years old (hEDS) – “I wish I didn’t have EDS, Mummy. Make it go away. I hate having to wear my braces. The kids ask me too many questions [about] why I have to wear them. I hate my EDS.”

Nikolas, 9 years old (hEDS) – “It hurts me. I love to draw, but it hurts my hands. I hate when bits go the wrong way, like my elbows and feet. I hate when my shoulders won’t move.”

Mathew, 7 years old (hEDS) – “I hate that it’s made me stretched (marfanoid habitus) and that I bruise and get nosebleeds all the time. I can’t walk far and running really hurts. I hate sports but my friends like it so I feel left out.”

Jack, 6 years old (hEDS) – “I don’t like my wobbly ankles and wrists and having no teeth like my friends, but I like showing my teachers how I can pick my nose with my tongue.”

Luke, 4 years old (hEDS) – “I fall over a lot which is OK, but not when my face gets cut. I don’t like wearing my boots (braces) with shorts. I can’t hold my pencils like my friends at school, too.”

Abigail, 8 years old (hEDS with vascular crossover)– “EDS makes me feel unique. It feels like I am hiding a secret because I don’t really tell people that I have EDS. People just don’t ask, so I don’t tell. Sometimes I am sad when I can’t play or do other activities that my friends do.”

Kyler, 10 years old (cEDS with vascular crossover) – “I don’t like when people stare at me all the time (he uses forearm crutches), or that people don’t believe me (that he has EDS). I miss being a ‘normal’ kid. But I know God made me this way for a reason.”

Dax, 7 years old (cEDS) – “It feels very sad. l have to be sick every single day of my life. I feel like I have the flu every day. It feels like stabbing.”

Katie (my daughter), 9 years old (hEDS) – “I’m different than my classmates. I like EDS because my class likes to see what I can do (um, we’re going to have to have a talk about this!). I don’t like that I hurt all over somedays.”

I also talked to Kathy, whose 12-year-old daughter, Ellen, has hEDS with a vascular crossover. Here’s what she had to say:

“Looking at the photos of Ellen… she looks healthy, happy and unaffected by her illness. The other day, she opened two packages (gifts), posed for photos and then was suddenly ‘done.’ Shortly after I took the photos, Ellen had a complete emotional meltdown. She was sobbing about how badly her body hurts and how she can not get away from the pain. It is frustrating when moving so little can cause her such distress. I, as her parent, feel helpless and heartbroken about this.

As a parent, we want to help our children any way we can. I have no idea how I can do that. I can’t take away the pain. I struggle to help her find ‘comfort.’ She agreed to take a bath and just relax in the tub for awhile. I could tell she skipped her pain meds as she was completely, mentally undone. I let her sleep in that day, and it completely slipped my mind. Obviously the Gabapentin is working. I just don’t think it is at the level it needs to be quite yet. My heart breaks for her.

This type of pain for a 12-year-old is difficult to describe, understand or help. I have watched my child crash and be crushed by the weight of the pain that comes from EDS. I have watched her miss school, day after day after month after year. Her friends continue to live life. She doesn’t know how to find her place with them anymore. The anxiety and isolation are horrific. It is more normal for her to sit in a doctor’s office and have a relationship with her providers than to sit in a classroom with friends. That speaks volumes to what life with EDS is like. There isn’t a day that she is not struggling. Not a day where her monstrous pain doesn’t rear its head. Not a day she doesn’t fight tears and sadness for everything she is missing out on.

When I asked Ellen how EDS has affected her life… She replied ‘what life.’ Heartbreaking.”

You can follow Ellen’s journey at Empowering Ellen.

So, right there are 25 reasons why I’m working so hard to raise awareness and research funds for Ehlers Danlos Syndrome. Because these kids deserve it.

You can find Hannah raising awareness for EDS at Sunshine and Spoons.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Ingram Publishing

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Being Subjected to Judgment Because of My Invisible Illness

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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.

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Thinkstock photo via Wavebreakmedia.

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How CrossFit Adapts for People With Disabilities

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The fittest on earth. The sport of exercise. Picking up heavy things, putting them down.  Burpees, box jumps and Olympic weightlifting moves. The world of CrossFit may seem like the last place you’d expect to find anyone with a disability. But in reality it is exactly where you should expect to find someone with a disability.

As I’ve continued along my journey of being “differently abled” I’ve found one thing is true – people understand to the level of their perception. Those who love me, know me, or take the time to truly understand have learned that disability takes shape in many ways, it is not the same for everyone, and there are good days and bad days. Those who don’t invest the time in education on the topic may think disability is a cookie cutter diagnosis – one that remains static. As such, those individuals often expect people like me to “perform” disability – there is an expectation that each day will be the same, and that what they see from me matches their schema for what it is like to be disabled.

Sometimes the same is true, but in a different way. I often find the people who know me the best don’t see me as having a disability, which in some ways is a fantastic thing. These friends and family see my unlimited potential, a few differences that make me unique, but never anything that is life-limiting or a disadvantage. However, like when someone says “I don’t see color,” there is an inherent problem with this. The dictionary defines a disability as “physical or mental condition that limits a person’s movements, senses, or activities.” By that definition, as individuals move in to their 40’s, most of us have something that doesn’t work well – so in turn we may all have a disability – a sensitive stomach, migraines, etc. I believe it is how we opt to let these things define us that changes a disability into either a disadvantage or a unique approach to the world.

For the past five years I’ve participated in the extreme sport of CrossFit, finally finding a permanent home at a small box (as our gyms are called) with a set of unique coaches who do not shy away from differences. I remember walking into the box the first day and explaining my Ehlers-Danlos syndrome, its comorbidities, and the nerve damage and spinal cord issue it had opened me up to sustaining. Despite having no clue what any of that meant as an athlete, they welcomed me with open arms and told me we would figure it out – and boy did we. A few years later our box is home to several coaches with their adaptive endorsement, provided by Crossroads Adaptive Athletic Alliance, and multiple seated athletes.

How is this possible in a sport known for extremely chiseled abs, highly tuned athletic ability, and endurance unlike any other? Because in my experience, CrossFit is the most adaptable sport on the planet. If you register for a local softball league, take karate, or join a kickboxing class, there is typically one standard of doing things. The sport of CrossFit recognizes the unique abilities and areas of weakness of each athlete and incorporates that concept into the core of its program. CrossFit inherently adapts itself as a sport for “normal” athletes, not at their peak fitness, those nursing a weekend warrior injury, or someone who just isn’t as strong in a particular area. This is known as scaling, or making an exercise/movement/workout appropriate to the athlete’s level and ability.

An example of this might be a workout that has box jumps in it.  Not only are box jumps a highly ballistic movement, they are something the average human in their first exposure to CrossFit is unlikely to achieve. The “scale” or adaption on this for “normal” athletes is to step up on the box. This achieves the same outcome, replicates the movement, and exposes the athlete to the move until they progress. Ironically, this “scale” is the same for “normal” athletes as it is for someone with a disability such as myself. Depending on the day, my body, and how I am doing I either step up on the box independently or step up holding on to the rig (the equipment used for pull-ups and weightlifting) for stability if my left leg is dragging.  The adaption I had to make as a “disabled” or as we prefer “adaptive” athlete is essentially the same as a normal athlete who simply has not mastered the box jump maneuver.

Can’t walk? No problem; for seated athletes or those lacking the full use of their lower body, the move becomes a transition from wheelchair or floor to box, utilizing the arms, and then back again. As you can see and imagine from the above, in a box with 15 athletes working out, each one may be doing several variations on the movement – but all athletes compete together against themselves – and no one ever feels different for the adjustments they need to make. In this sport, the athlete who doesn’t have box jumps mastered is no different, nor is their workout any different, than the athletes who will never be able to complete a box jump due to a permanent disability.

I recently had the opportunity to participate in the CrossFit Open, an international competition amongst athletes where individuals complete standard workouts and are able to rank themselves against others. Crossroads Adaptive Athletic Alliance and WheelWod partnered to provide workout standards that were challenging but worked to adapt the released standards for each disability category.

I encourage everyone who has some sort of disability, be it permanent, progressive, minor, or major, to look at the sport of CrossFit as a way of gaining strength, independence, confidence, and seeing themselves as the equal of others. In the famous words of Albert Einstein, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” As I adapt everything in my life, I’d like to adapt that quote saying, “Everyone is an athlete, but if you judge a person on their ability to exercise in one one uniform movement, they will live their life seeing themselves as disabled, and thusly disadvantaged.” However, if you introduce a person to a sport where adapting and scaling is part of the norm, that person will come to see themselves as the athlete they are.

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Spoonies — Show Me Your Spoons

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I’m just gonna go ahead and get this out. Hi, my name is Saidee and I have an invisible illness. Multiple illnesses, actually. Well, they are invisible to most, but they are very visible to me.

I see it in my purple feet, thanks to blood pooling in my legs. I see it in the weight I’ve gained due to exercise intolerance. I see it in my weekly schedule, high on doctor’s appointments and low on social engagements. I see it in the loss of a career I loved greatly. I see it in my daughter’s face when I tell her I can’t pick her up or carry her. What is invisible to many, is so clearly visible in my life. And being invisible can feel incredibly isolating.

An article on umass.edu states that, “It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability.” It goes on to estimate that one in two Americans has some type of chronic medical condition. One in two! Half of the U.S. population is walking around with an “invisible” condition and, yet, most of us are walking around feeling completely alone.

An invisible illness, as you’ve probably guessed, is an illness that isn’t immediately visible to others. Such conditions include: depression, anxiety disorder, Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome, celiac disease, irritable bowel syndrome, and so many others that I could never possibly name them all. These conditions range from common to rare.

I happen to have multiple invisible illnesses which have become debilitating for me. When I am in my wheelchair or using my rollator, my illness becomes visible to others. I have run into many people who are quick to help me or accommodate my needs when I am using a medical device. I get looks of pity and am often talked down to, but that’s a subject for another post.

But when I’m out in public without my wheelchair or my Rollator, I am met with looks of criticism and judgement. I get eye-rolls that read, “God, what a drama queen,” if I’m out and exclaim to my boyfriend that I need to sit down so that I won’t pass out. I’ve had people laugh when they hear me out of breath after walking across a parking lot, yet, they don’t realize that I’m panting because my heart rate is getting dangerously high and I’m on the verge of passing out. I’ve heard several whispers and snickers because of my not-so-fashionable compression socks and leggings. I wonder if they would still be whispering and judging me if they knew that my compression wear is the only thing keeping my blood from pooling in my legs instead of circulating?

How is it that 50 percent of US citizens have some kind of chronic medical condition, and yet, our society immediately assumes that someone walking slowly is just being a pain in the ass rather than having a legitimate medical condition? Even with my wheelchair, if someone sees me stand up and get out of it, their looks go from pitying (not an enjoyable look either) to horrified and judgmental. There are several different reasons that someone might need a wheelchair. Being a paraplegic is only one of them.

Could it be that the reason people have a hard time believing in and understanding invisible illnesses is because they are so often kept hidden? Or is it that we feel we have to hide our illnesses away to make others feel comfortable? Often, as I explain my condition to people, I see their eyes gloss over and their faces contort into an expression that says, “Oh dear God, what do I do? This is so awkward.” They seem unsure of how to handle what I’m telling them. Are they supposed to pity me? Are they supposed to offer solutions? Are they supposed to tell me they’ll pray for me? Or that they’re sure that things will get better one day?

I have heard all of those reactions and more. I end up feeling trapped in this weird place of wondering if I should be honest and talk about what’s going on in my life or pretend that everything is OK so that the conversation doesn’t get weird. But then, I’m not really left with much to say. I don’t talk about my illnesses to get pity or attention. I talk about them because they are a pretty big part of my life right now. They inform most everything that I do. There isn’t a day that goes by where I don’t have to think about my illnesses. Leaving out my illnesses in everyday conversation feels like I’m being dishonest because, honestly, my illnesses are an everyday thing.

A female with a spoon on her nose.

So, I choose to talk about my illnesses. Not because I want to make others uncomfortable, but because I want to make it more normal to talk about these things. I don’t want to be afraid to tell someone that I’m getting dizzy and need a break just because society says that I’m supposed to suffer in silence. I don’t want to shy away from telling people what I’m feeling, or being honest with myself, because I’m afraid of judgement. Because, the truth is, I know a secret that society doesn’t seem to know.

I know that my illnesses are a sign of strength, not a sign of weakness. No matter how bad things get, and sometimes they get really bad, I know that I will continue fighting. I will continue to try to find the best in each situation. I will continue to try to find new ways to combat symptoms. I will continue to try to be the best mother, girlfriend, daughter, teacher, etc., that I possibly can be – even if those roles look very different than how I hoped they would. And I will continue to fight for others with chronic illnesses, to erase the stigma that keeps us hidden away from the world. I will continue to be a warrior, just like every other person who is battling a chronic illness.

This is where I call on all of you to help. Let’s make the invisible visible. I’m calling on all Spoonies out there, whether you are disabled or not, and all Spoonie supporters to, “Show me your spoons!” If you are up to the challenge, then take a picture of yourself with a spoon (preferably hanging on your nose because…well, because it’s fun) and post it to social media. Tag it with #showmeyourspoons. Some other tags I’ve used are #endthestigma and #maketheinvisiblevisible. Feel free to share what chronic illness you are fighting, but it’s also OK if you aren’t ready to share that yet. Just sharing your spoon is enough. Let’s show the world just how many of us there are!

Follow this journey on Spoonie Warriors.

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Thinkstock Image By: AlexRaths

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Canceling Plans Because of My Illness Is Not a 'Cop-Out'

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We make plans, and I have to cancel last minute. I know you probably don’t understand and feel like it’s a cop out. Or are sighing, thinking, “Oh great, she’s sick again.” Maybe you think I’m avoiding you, I don’t know. I understand because I’m frustrated with myself and my own body. But it’s not a cop-out. It’s not because I’m just not pushing through. It’s not because I don’t want to be there, because 110 percent, I do. But this isn’t just “being sick.” It’s not like, a cough or a stomach thing I can get over.

A flare-up doesn’t sound bad, but I can’t explain the depths of pain my nerves wreak on me. My muscles start to do this certain twitch, and I know it’s going to happen. I would say that’s the worst part, knowing and not being able to do anything, being terrified because there’s nothing to stop it and no medicines or resting or special things can treat it. It’s uncomfortable but I can work through it and I do until my muscles start to drag, and are so heavy I can’t even move. It’s frustrating, and scary.

Then my nerves start to fire, and it starts as a light tingle across my skin, escalating into hot pokers over every inch of my body. The heat and pain intensifies and all I can do is cry and hold as still as possible and try to remember how to breathe until it goes away. It hurts to be touched, by anything. People, clothes, even a feather feels like glass. And eventually, it’ll start to subside. And when my nerves have exhausted themselves, I’m so completely drained, I have nothing left. Sometime this process takes a few hours, sometimes it has taken a few days. These are the worst moments of my life when I start to believe the only feeling worse is hell, and honestly it scares me straight a little for fear of going there. In addition to dealing with pain, I have to handle the guilt of knowing I let you down, again.

Sometimes I wonder if I did something to deserve it, and other days I know that it’s not my fault, and it’s not your fault that you don’t understand.

You don’t get it until you get it. And I pray you never have to experience anything like this. This is only one part of dealing with the mess that is my body.

Please understand, I never mean to let anyone down, and I wanted to be there.

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5 Things I Don't Want to Say Out Loud When My Illness Gets Worse

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I am currently lying in bed awake because my skin tingles so bad I can’t sleep. The torn muscles in my hip don’t help much either. I couldn’t even finish a sentence today because I kept stuttering. My normally stoic roommate looked at me with a mix of pity and concern. But I have people who care. And I can’t tell you how much of a difference that makes. If not for the man laying beside me, I would be curled up in a ball sobbing hysterically right now. That’s how bad things have gotten.

But there are things I still don’t tell him. Which is why I’m writing it. I want you all to know that I love you. Your support, your help and your faith in me to make it through impossible odds. But there are things I (and others with chronic illnesses) don’t want to say out loud.

1. I don’t feel like a person.

Right now I have so many different things going wrong in my body that I don’t even feel human anymore. I feel like a broken vase that can’t be glued back together. I feel like a bundle of illnesses. Of broke bits and diseases. I need to be able to go out and do things that make me feel normal. So don’t suggest that we cancel a trip. Maybe make suggestions as to how we could help my mobility during the trip. This will not only surprise most of us but show us that you really do care.

2. Please don’t baby me or try to coddle me.

It’s bad enough that my own body hinders me. Let me try to do things on my own first. Let me come to the conclusion that I can’t do it on my own. I don’t want to take my frustration at the situation out on you. I know you mean well but I need to come to terms with my illness on my own in this. Ask before doing anything or helping and please don’t be offended if I curtly turn the help down.

3. Don’t freak out on trips to the ER.

This was a new one for me recently. I have had two trips to the ER in as many weeks. The first time is always scary. But go prepared. Bring their phone charger. Bring warm fuzzy socks. Bring snacks for yourself while you wait. They may not be able to eat or drink until they see the doctor but they also don’t want you to suffer. Bring little things like Chapstick because hospitals tend to be very dry environments. Keeping your loved one entertained while we wait helps both of you keep your mind off why you are there. It wouldn’t be a bad idea to keep a list of your loved one’s medications and current conditions on had as well. Maybe stashed in the car somewhere.

4. Sensation can be painful.

Whether it’s sound or touch or watching someone bounce their leg, some of us can get overstimulated easily. If your loved one places a hand on your knee to stop it from bouncing, understand that the motion is probably making them nauseous. The scratching on their leg might feel like fire. Rubbing their back might make them want to scream. Hearing music or TV too loud might be too much for them to concentrate on anything else. My body is trying to process all of my pain signals and sometimes that’s enough to drive me to distraction. Anything extra seems a special kind of hell.

5. Be patient.

We are learning our illness right along with you. It may feel to us at times that our world is out of control because we have a new symptom that we don’t know how to cope with. We may be moody. We may snap at people we care about. But it likely doesn’t have to do with you. We are going through our own grieving process of losing our mobility and our independence in some cases.

It’s a tough road to walk. But with those of you who stick by our side we somehow make it through. We love you dearly and come to rely on you for more than you may realize. So please, be patient and love us. That’s all I ask.

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Thinkstock photo by 2Mmedia

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