To the Person Who Reminded Me Others Have It Worse After My Hospital Stay

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The conversation with you happened over two years ago, and yet I still remember it vividly.

I was only a month out of the hospital when you cornered me in the hallway at work. You knew my mom had moved to live with me because I was extremely sick, but I don’t think you fully understood how close to dying I had come. You asked me how I was doing.

I answered honestly, but vaguely. I told you I was doing slightly better, but I was still very medically unstable. I had to take each day at a time, and sometimes even each moment.

I don’t believe I’d even finished my sentence before you responded, “Oh. Well, you should think of those worse off than you. You know, like those that have cancer. Or a chronic disease.”

You rendered me speechless as I tried to gather my thoughts into coherent words.

It was then I told you I do have a chronic disease. And actually, it was my chronic disease that was making me so ill. That didn’t stop you though. You still responded with, “Oh. Well, think of those worse off than you. Like those living with cancer.”

I wish I had the courage to tell you how much those words stung. At the time, you had no idea how many scary and painful medical tests I was having done. How many specialists I was seeing. How that particular hospital visit gave me PTSD that I still struggle with to this day. I didn’t disclose any of that to you.

You also didn’t know I watched my close friend die from cancer not even two years prior. How I sat late at night with her, both of us crying, because we didn’t know what our futures looked like. How we both had our lives planned out and knew what we were supposed to accomplish before it seemed like our dreams were stolen from us. How we both had scary medical labels associated with our pain and suffering. I lived. She didn’t. But I also almost didn’t live. Your careless words brought back a tidal wave of memories with her.

Amber and her friend Kara

I’m not sure what you hoped to accomplish by stating that phrase, not once, but twice to me.

I wish you had the wisdom to merely acknowledge the fact that I was going through a difficult time and you didn’t know how to respond. You could have encouraged me and reminded me I didn’t need to compare my journey to anyone else’s in order to validate it.

If you’re struggling with something and someone feels the need to remind you other people have it worse, remember this: It doesn’t invalidate your emotions or fears. Your journey is your journey. Someone might have it worse, but someone also might have it better. Don’t ever doubt the difficulty of your journey. Guilt over your emotions will help no one.

Follow this journey on Clearly Alive.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the People Who Don’t Know How to Respond to My Chronic Pain

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To the people who don’t know what to think or say about my life with dystonia and chronic pain, it’s OK. I have no expectations. For a while, I was angry when I didn’t feel like my pain and other symptoms were fully acknowledged. After 15 years, I’m OK with it. I’ve learned that I have to be. It’s too exhausting trying to explain and please others. My comfort and happiness must come first — as must yours. We can all take better care of each other if we take better care of ourselves.

That being said, I secretly wish you could live in my body for just one day. I don’t want you to suffer, but a day in my shoes would help you better relate and make me feel more understood. Here’s what I believe you’ll learn about life with dystonia and every other chronic illness.

I’m still a worthwhile human being. I still want to enjoy work, family, friends and leisure activities, but I feel stuck inside a body over which I have little to no control, keeping much of that out of reach. Doctor’s appointments, treatments, medications, the rest needed to function, anger, worry, frustration and fear are all part of my every day life.

Making plans is often uncomfortable because I may not be feeling up to following through. Sometimes driving is difficult. I’ve also become sensitive to certain stimuli, such as bright lights, noises, crowds and certain smells, so I carefully pick and choose my activities.

I may not know how well I will feel each day, let alone hour to hour some days. There are days when I can do more than other days, but just because I did something one day doesn’t mean I can do it again the next.

It’s frustrating dealing with people’s expectation that I get better faster, get over it already and act as though I’m cured when my physical symptoms are unseen or after I get a treatment, most of which just mask my symptoms at best.

When I say I’m fine, it doesn’t mean I’m not experiencing pain or discomfort. Sometimes words aren’t adequate to describe how I am feeling. I attempt to hide my symptoms to avoid being a bother and to try and forget. I desperately want to feel “normal.” The kind of pain I experience has forced me to adopt coping mechanisms that don’t necessarily reflect my real level of discomfort. When I say I’m in pain, it’s usually worse than usual; much of the time I’m just coping and trying to sound happy and look normal.

“Getting out and doing things” doesn’t make the pain vanish and can often exacerbate my symptoms. If I were capable of “getting on with things,” I would. I’m constantly striving to improve and do the right things to manage my symptoms so I can “get out and do things” more. Sometimes I hear others say, “You just need to push yourself more; try harder.” It may be hard to read how I feel on my face or in my body language, but I push myself all the time — sometimes too much and I pay for it later with worse symptoms. Finding balance is one of my greatest challenges. Some days I do nothing but push just to get through the day.

Each day has to be taken as it comes. I have to mentally prepare and carefully consider if an activity is going to cause more symptoms. This can lead to a great deal of fear and anxiety because I never really know how much my body is going to cooperate. Going on day long trips or walking through the mall may be out of the question for me. I tend to need frequent rest breaks so “making a day of things” means something different to me than it once did.

Sometimes I sense that I’m unwanted and unwelcome. This is logical since it probably feels like a slap in the face getting rejected almost every time people ask me to do something. Even if I say “no” most of the time, I still hope you will ask. It’s important to know I haven’t been forgotten and am still valued. Just because “no” is a common response, there are times when I will say “yes.”

It’s hard for me to sit on the sidelines, and I feel deprived when people stop asking me to join in activities. When I am physically and mentally able, I will always say “yes,” so please give me that opportunity.

If listening to the details of my condition makes you uncomfortable for a short while, consider this: what is your short-term discomfort of lending an ear compared to the long-term, chronic discomfort of a friend or loved one?

Talking about dystonia is one of my most important coping tools. Denying me of my best survival mechanism makes a hard day even harder, but bringing it up on my own has become tiring. However, I rarely exhaust of answering questions. I love it when someone takes the time to ask about my condition. Efforts to understand makes me feel valued.

Since you can’t really live in my body for a day to see what it feels like, I hope you will now better understand why I live my life the way I do — self-preservation so I can enjoy every moment to the fullest!

Edited excerpt from Diagnosis Dystonia: Navigating the Journey (2015), by Tom Seaman

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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Why I Want Everyone to See My ‘Coming Out’ Photo

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Women are defined by their looks on a daily basis. Comments made in daily conversations pass judgment as if people were talking about the weather…

“She wears too much makeup!”

“Her shorts are way too short. She’s too old to wear Daisy Dukes.”

“Have you seen her hair? I knew blond wouldn’t look good on her.”

Growing up in a society that places so much emphasis on our looks makes girls acutely aware of their appearance. And at the age of 15, this became extraordinarily clear to me. I was diagnosed with alopecia areata three years prior, when we found a couple bald spots on the back of my head. Easily disguised, these spots would come and go without notice but never affect my day-to-day life. In 2005, that would all change. On break from school for Easter holiday, my hair began to simply fall away. It began in the shower when I noticed an abnormal amount of hair fall out when shampooing. Within a week, I had lost 90 percent of my hair. A couple weeks later, while over at a friend’s house (and a bit of liquid encouragement for Mom), we talked them into shaving off the rest of my hair to rid myself of the little strands that reminded me what once was. Our wonderful and creative friends filmed that process, which has since become a bit of an anthem.

This is where my story begins again. Filming the toll alopecia had on me, my family and our friends gave me a positive place from which to share my story. Celebrating beauty and freeing myself from hair built my emotional foundation. It gave me enough strength to love myself and inspired me to share that experience with people who haven’t been able to love themselves in years. Fifteen years old and bald isn’t something people see every day — and that was OK. Embracing my uniqueness not only helped me, but it helped others accept my differences, too.

That has become my life theme. Helping others has helped me. It inspired me to create the above picture as a form of “coming out” from wigs, stereotypes and assumptions. By setting your own definitions of beauty and acceptance, you also set a new standard for society. It draws people’s attention away from the external ideas of beauty, which encourages new reflections:

“She looks awesome without hair, her face is beautiful.”

“I wish I could rock a look like that.”

“You prove that hair is very little to the makeup of a woman.”

What makes up a woman is who she is on the inside, regardless of how she looks. Beauty starts from within, owning your “abnormality” starts the discussion of acceptance — and starts the change within society.

To my fellow alopecians struggling with acceptance and self-love: you are never alone.

As William James said, “We are like islands in the sea, separate on the surface but connected in the deep.” Alopecia can feel like you’re on an island surrounded by people with hair, little understanding and loads of sympathy. But the sympathy doesn’t make you feel better; it worsens the situation. Take the proverbial leap and swim away from the island. You’ll be amazed to see who comes through and who fades to black. I’m so thankful alopecia gave me the truest friends in the world.

Sometime’s it’s easier to hide behind makeup and glue on eyelashes and wigs, but then no one will know your journey. Love begins with you. Learn to love your most minor details and people will love you the same way.

Everyone struggles with self-love. It’s one of life’s most difficult challenges. But by loving and embracing what makes you “you,” it gives you something others don’t: self-love and acceptance. Give yourself a little self-love every day:

“Wow, I look really good in this outfit today.”

“I love this color on me. It brings out my happy side.”

“My makeup is perfect today. I love feeling sexy.”

It’s never too late to start. Life is short — better love every second of it!

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5 ‘Helpful’ Responses to My Child’s Complex Issues That Don’t Help

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I believe one of the biggest challenges special needs parents face is trying to unravel the complex issues associated with our children. Sometimes it’s asking, “Why won’t he eat?” or “Why is she so anxious during social events?” Parents like my husband and me not only have to deal with issues such as these, but we’re also trying to understand everything associated with our son medically.

For example, a few years ago, my son started a new medication to treat his primary diagnosis, tuberous sclerosis complex (TSC). A year after starting this medication, he was seizure-free, but he also stopped eating. Feeding issues weren’t new to him, but giving up eating was, and we became concerned. After asking adults on the same medication and speaking to his clinic and nutritionist, we have a better understanding of how the medication may be affecting him and a plan to help him get the nutrition he needs, but we still don’t fully understand it. He could be refusing to eat because of his autism, medication or behavioral issues. We also realize we could be partly to blame for finicky eating habits.

It’s particularly difficult for us to understand how to manage issues like this, so when others ask questions or make suggestions, trying to explain it to them is almost impossible.

I know my husband and I aren’t the only parents exhausted by the questions and unwanted advice over subjects we’re trying to understand ourselves. I want to share a few insights about what it can feel like for special needs parents when conflicts arise over our child’s issues.

1: Unwarranted parenting advice makes us feel like we haven’t done enough for our children.

Although we’ve spent years with professionals to try to help our child work through various problems, there’s no magic fix. There will still be times when he has a meltdown, inflicts harm on himself or others and many other things we’d rather not see. This doesn’t grant anyone the right to offer advice when it isn’t needed. The truth is, we don’t like seeing our children struggle either. That’s why we work hard to help them. Don’t forget they’re often having trouble in ways we don’t understand.

2: Telling us what you think our child should or should not do causes unwanted stress.

There’s a party and all the kids are lined up, ready to play a game, and someone says, “Everyone plays, even (insert our child’s name here).” We’ve even been told we have to sing the “Happy Birthday” song to our son even though it causes him anxiety and will set off a meltdown. We do want to help our child test his boundaries, but we’re also well aware of those boundaries. We certainly don’t appreciate someone else making assumptions about what our child can or will do. Asking before assuming is always the best approach.

3: Pointing out our child’s issues is upsetting.

I don’t understand why others feel the need to point out our child’s issues. We’re obviously aware of these things; he’s our child. Instead, try acknowledging the good things our child is doing.

4: Trying to “fix” our child undermines our parenting.

Trying to “fix” things, especially without our consent, is not welcome. We aren’t neglecting our child when we choose not to do or offer things others may feel he needs. Sensory issues are usually behind the anxiety he feels over getting a haircut or being offered a new food (with a new look or texture), so unless you’re a expert on sensory or anxiety issues associated with autism, please stop. The best thing to do is ask, “How can I help?”

5:  Ignoring requests associated with our child will indeed cause friction in our relationships.

My late grandfather meant well when he would ask my son if his food was “good” every time my son sat at the table with him. My son’s response to the question was always the same: he’d scream and hit himself. This never stopped my grandfather from asking. Mealtime is usually the biggest cause of anxiety for our son. It takes a lot of effort to get him to sit at the table for a meal, and getting him to eat is an even bigger deal. After all the work involved, it would be undone with the same question from my grandfather: “Is that good?” Ignoring the obvious friction the question caused made mealtime a problem for all of us.

Sometimes an innocent question or action could cause anxiety for our child, so please respect our requests regarding him.

The bottom line is this: We need the support of those around us. We understand it’s hard for those who love our child to feel helpless because they want to help. The truth is, we feel helpless, too, but we’re doing our best even though we don’t have all the answers. We want to be trusted to know what’s best for our children. When we all work together, we have the best chance at helping these wonderful children have a happy future.

Follow this journey on Crossroad Trippers.

Lead photo source: Thinkstock Images

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To My Social Media Friends, From a Woman With Schizophrenia

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Dear social media friends,

When I was in fifth grade, there was a boy named Kenny who sat behind me. Kenny had been diagnosed as hyperactive. He was constantly drumming on this desk, kicked the seat in front of him and occasionally started talking in the middle of class.

One day the school psychologist called me out of class and asked me to help Kenny settle down so his behavior wasn’t so disruptive. Apparently Kenny had told the psychologist I was a person he trusted. As an 11-year-old girl, this felt like a huge responsibility. On one hand, I had compassion and empathy and didn’t want to see Kenny hurt or mistreated. On the other, if I showed him too much attention I would be the object of cruel jokes by my classmates.

After that day, I occasionally told Kenny to settle down in class, but I didn’t show him too much kindness. If I could go back in time, I would hold his hands to keep them still, sit with him in the lunch room and try my best to be a calming presence and friend.

The thought of Kenny struggling with his illness so publicly, but all alone, makes my heart hurt.

It’s with the knowledge of this experience that I write to you about my own illness, paranoid schizophrenia. I’ve noticed any time a close friend of mine or family member posts the words paranoid schizophrenia on one of my social media sites, many of you unfriend or block me.

I realize there’s a great deal of misinformation and stereotypes that surround paranoid schizophrenia. I realize it may seem scary or weird to have a “friend” with that diagnosis. But I ask you to please give me a chance to dispel the myths surrounding my illness rather than shut me out altogether. 

The world of social media is frequently painful for me. I see people with breast cancer, heart disease and other illnesses receive so much support, good will and even fundraisers to offset their treatment. I can’t help but feel a little lost and hurt by a “community” that rallies around a person with one illness while completely locking out someone with another.

I’m not asking you to feel sorry for me. I’m asking you for a small opening. I’m asking for the opportunity to show you the truth about someone living with paranoid schizophrenia. There are not too many times when we get the chance to make a choice that has a lasting impact on someone else’s life and well-being. You have that chance with me. If you decide to unfriend or block me, I can only hope someday you’ll come around. You might see me as I see Kenny now.  

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When Doctors Made a Crushing Comment About My Symptoms

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I was recently admitted to the hospital for four days. I was in a high acuity room, which is somewhere between standard admission and intensive care. Initially, I felt well cared for, despite repeatedly being given things I was allergic to, but we’ll save that for another day.

Then, on the third day during rounds, the doctors told me they didn’t know what was wrong, but there may be a “psychological component,” and either way, I would be going home soon. I was caught off guard and managed to get a meek “OK” out before they left my room. After thinking a moment, I requested just one doctor come back to speak with me about their decision. The doctor explained they felt I was sick for so long that I got used to it and wasn’t trying hard enough. Suddenly, and quite unexpectedly, I began crying. Well, not just crying. It was loud, “I-can’t-make-intelligible-words” sobbing. In between sobs, I tried to say, “I just want to play with my son again. I really feel I’m trying hard,” and continued to sob loudly after the doctor left for over an hour.

I have had many friends and strangers tell me stories about doctors telling them their illnesses were all in their heads. I had never heard that myself. Even though I had several diagnoses, I figured at some point in my life I would hear this, too. Having that forethought, I thought I would handle it well. But I didn’t. I shut down, was deeply depressed and barely spoke for two days. I left the hospital just as sick as I went in, and on top of that, I felt terrible about myself.

I saw how damaging that simple statement had been. My husband offered evidence of how hard I’ve been trying, and it was possible the doctors felt a need to give a diagnosis before I left. I have left hospitals many times with the “I don’t know” statement. While that can be disheartening, it’s not so crushing as “It’s in your head.”

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I don’t expect everyone to know what’s wrong with me all of the time. After all, doctors are human, too. I know I’m quite complicated with five autoimmune diseases and have grown accustomed to the “I don’t know” response.

The “It’s in your head” statement is counterproductive and painful. This statement puts the blame back on you, the patient. It says the problem is not in the mechanics of your body; it’s inherent in who you are. You’re not trying hard enough to be well. I’ve either faked a mountain of lab tests, imaging, respiratory tests, vitals and nurses rushing to alarms, or I don’t warrant enough concern, simply because my symptoms don’t fit a clear textbook pattern. Just because they don’t fit together, doesn’t mean I don’t feel their consequences.

I understand this is not the way they hoped it would come across, but this is the way it is often perceived. I’m not one to complain without any ideas for solutions, so I’ll offer this: I would much prefer to be told, “I’d like to start you off with a counselor to speak with, since being ill for so long can be difficult and stressful.” This would get me to the same end goal of receiving counseling without the added feeling of ineptitude and being unheard. It refocuses the problem on your body rather than who I am as a person. Lastly, if doctors are really unsure about your symptoms, that should be their response.

Follow this journey on Tiny Salutations.

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