The Chronic Illness Advice That Could Quite Literally Kill Me

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When it comes to autoimmune disorders, one size does not fit all. Even our doctors deal with us on a case-by-case basis:

“This drug works for him, but can she tolerate it?” or “It isn’t doing anything for her at all, even after six months.”

“This drug is superb for joint aches caused by rheumatoid arthritis! But your white blood cell count has been flaky from Sjögren’s syndrome, so we’ll have to stop using it.”

“This is the latest drug that has worked for almost all our patients, but it costs $10,000, and there is no guarantee it will work for you too.”

It isn’t quite like a cough or a sore throat, where you go to the pharmacy to get the same prescription as everyone else.

Even patients with the same classification of illness might not understand the full spectrum of their own disorder. For example, there are actually four different types of Lupus and hundreds of different symptoms.

It might destroy the kidneys of one person, but for someone else with the same disease, his skin might be affected instead. Each of these parties may never understand what it feels like to be in the other person’s shoes, despite being diagnosed with the same disorder.

I’m sure almost everyone with a chronic illness has a pet peeve. Mine, hands down, would be health advice given by acquaintances who have no idea who you really are as a person, what you do on a daily basis or the specifics of your disorders.

They dispense advice for exercise but are not there beside you in the mornings when you’re struggling to sit up in bed. Or maybe you’re already doing more exercise than them, despite your pains.

I’ve had many people enthuse about magical beans and seeds or suggest I go vegan. This can be little tricky when one has APS (antiphospholipid syndrome), a disorder where your blood has a tendency to clot. The blood thinners I take require close monitoring of the foods I eat — variations in my diet could, quite literally, increase the risk for blood clots that could kill me (hence the title of this piece). I once ate a plateful of quinoa and woke up to a giant bruise covering half my arm.

Who knew that a non-green food would be that dangerous? I discovered that while quinoa in itself does not contain vitamin K (the vitamin which helps with blood clotting in a normal person but must be controlled in APS), the shell enclosing it contains saponins, which triggers blood thinning instead. Anyway, who knew a plate of organic, healthy stuff wasn’t so good for me?

These days I am trying to understand the perspective of a “healthy” person a little more. I put myself in their shoes and ponder, “How could they possibly understand? I can’t blame them for that.”

My psychologist has also played a key role in my journey towards psychological healing for the past year, and presented this issue to me in a different light: while you are not their number one concern, their thoughts are still coming from a good place and their intentions are not malicious.

This thought calms me down, and I smile, nod and meditate on it whenever someone comes along and does just that again. I try to listen — perhaps they actually do have something new I could consider. If not, I try to let the comments slip off before they permeate the barrier of my mind to trigger anger… or maybe I am just getting older.

Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please see a professional before starting or stopping a diet regimen. 

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WNBA Star Jewell Loyd Shares Her Dyslexia Story on Times Square Billboard

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WNBA star Jewell Loyd’s face is plastered on a 32-story, three panel LED billboard in Times Square for one purpose: to tell her story about living with dyslexia and to encourage others to do the same. The billboard is a part of the Share-Ability campaign by Eye to Eye, a mentoring group for and by people with learning disabilities.

The mission is to encourage “different thinkers,” or people who have learning disabilities, to share their stories. More than 20 percent of the U.S. population (1 in 5 children) who have learning disabilities. “I believe that sharing my story is one of the most powerful things I can do,” the 22-year-old Seattle Storm guard said in an Eye to Eye press release. Loyd, the 2015 WNBA Rookie of the Year, is one of many athletes partaking in Eye to Eye’s Share-Ability campaign, joining the ranks of Indy500 race car drivers Sir Jackie Stewart and the late Justin Wilson, who both had dyslexia. Her story is the first to be featured on a Times Square billboard. At age 12, after struggling in school and being accused of being lazy by teachers, Loyd learned she was dyslexic. She recalls the term “learning disability” initially freaking her out. “I wondered, ‘What are my friends going to say,” she said in the press release. “I was afraid people would think I was stupid.” 

Loyd is also an Honorary Eye to Eye Diplomat, where she mentors and advocates for kids with learning disabilities. When it comes to serving as a role model, Loyd encourages kids to turn disability into ability and to live by her motto, “You have no idea how able I am.” Her ultimate goal through the #Share-Ability campaign: helping kids change their lives and dream big.

“I want to encourage kids with learning disabilities to be proud and dream big,” she said. “To think that I am able to change lives is really such a dream come true.”

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When Advocating Becomes Bullying in the Autism Community

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As someone on the autism spectrum, I definitely consider myself to be a major self-advocate. I truly love sharing my experiences. My hope is that others can take what I’ve been through and apply it in a way that may help someone else on the spectrum.

Sometimes it can be difficult to be an advocate. I need to remember that I’m not the only one with an opinion. I need to remember to be respectful, even if I disagree. But I’ve been seeing another issue lately. That issue is when I see others — both on and off the spectrum — attacking each other and complaining about the things they don’t like. I don’t just mean disagreeing. What I’m seeing is almost bullying.

As World Autism Awareness Day draws near, I have seen multiple strong-worded posts about how people who aren’t on the spectrum should and shouldn’t act. And they were posted in a support group for people who aren’t on the spectrum. I saw other posts bashing people simply for trying to show support to an organization of their choice.

I see a lot of people complain about the way others spread awareness (and I will be the first to admit that I’ve been guilty of this at times, too!). But I think there comes a point where the autism community needs to stop criticizing the way others advocate, and start to just ignore those actions if they really dislike them that much. Instead, just advocate the way you would like to. Stop telling others what not to like, and spread the love of what you would like to see instead.

Let’s be happy for others, instead of taking positive stories and turning them into something to be unhappy about. Advocating shouldn’t be about tearing down the people who you disagree with. It should be about supporting others who you appreciate and lifting them up.

I’m going to try to remember to do this more often. It’s tough at times, but I am tired of the hate. There’s a fine line between taking a stand and being negative or even downright rude or mean.

April is Autism Awareness Month. Let’s remember to be kind to one another when we spread autism awareness, acceptance and understanding.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Submit a Story page for more about our submission guidelines.

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To People Who Ask How I Can Have Such a Good Attitude With Chronic Pain

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Over the past 12 years of my devastating diagnosis of irreversible nerve pain that will in fact get worse with every additional surgery I have for hydrocephalus, I’ve gotten this question a lot. “How can you have such a good attitude when you have so much stacked against you?”

I think the first thing I would say to that is that it’s a multifaceted question. The first thing I would say is I am human, so no, I’m not always happy. I try to be in a good mood most of the time because the facts are the facts: “I’m not going to get any better, and with every additional surgery, I’m only going to get worse.” I accepted that because I had to, not because I wanted to. Because one day when I realized my energy level was about a third what it used to be, I sat there and thought to myself, “Is this really what you want to waste what little energy you now have on? Something that will never change, no matter how mad you make yourself? Or do you want to focus your energy on making yourself the best you can be, mentally?”

I believe happiness is a choice. Just like anything else, it takes practice. Lots of it. You aren’t just born happy. I think it takes disappointment to prove that happiness exists and that you yourself can attain it. I can’t change the cards I’ve been dealt, so why not just turn them into something new? It’s no different than turning a six into a nine. You just need to shake up the cards you’ve been dealt and deal them in a new way. A better way. I have no reason to be unhappy.

Look at my life — I was adopted by the most loving, giving couple in the world. I gained four amazing siblings and an amazing extended family. I have four parents who love me! What is there to be upset about?! Yes, my health situation isn’t fantastic, or even good in most peoples’ minds, but if that’s the only thing wrong with me, I will celebrate, because I’ve gotten through many tougher things in my life!

With health problems, you don’t get to choose a lot of things in life. Your life’s plans are chosen for you by your illness, or by your doctor’s schedule. So why not choose to be happy? It’s the one thing you can choose! There is no rhyme or reason to it — you just must make the choice. You have two choices in life: to be happy or not. So why not be happy? There are very few things you can control with a chronic illness. Well, at least most of the time. Of course it’s painful and I would do anything not to have it, but I do. So I do the only thing I can do. I live!

So here’s the short answer. There’s no magic pill that’s going to take my list of problems away. No magic wand. I wish! I made a choice. That’s no different than you making a choice of what color socks you’re going to wear that day. Well, maybe a little different. But it was a choice I felt like I had to make to survive. If you were faced with the choice you had to make to survive and thrive in the world, what would your choice be? You already know what mine is.

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Kimi (left) and a friend.

Follow this journey on Blessings In Hydro.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

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The Many Challenges I Faced to Get an Education With My Cerebral Palsy

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Since I was a little girl I always felt I was carrying a label on my forehead, like an item on a shelf. Back in my birthplace, the Dominican Republic, once I stepped out of the door, the label “cerebral palsy” became visible to others because of my physical appearance and the way I walked, talked and stood. In the small town where I grew up, I was not seen as a “normal” child. Actually, when I went with my family to the park or when we sat on our porch, people asked my parents what was wrong with me.

It never crossed through their minds that I might have cerebral palsy (CP) because that word was unfamiliar to them. The country lacked resources and awareness about CP. Even the doctor wasn’t familiar with it. From the doctor’s point of view, there was no hope that I would be able to walk, talk, eat, or bathe on my own. I didn’t have a childhood like the other kids who were running, jumping, making friends and attending school. I didn’t have that privilege.

As a little girl, I didn’t know what it was like to sit in a classroom because I couldn’t attend school. There was no way for children with cerebral palsy to get enrolled in school. Since I was 6 months old, my parents had to drive me to a city miles from home so I could get physical, occupational and speech therapy, until a rehabilitation center was built in my town.

Years later, in 1988 when I was 15, my family moved to Paterson, New Jersey, and a new chapter in my life began. The hope that I would start school soon was my major dream. However, once I was in the U.S., the CP label was still with me. Those two words automatically meant I would not fit into a mainstream classroom because I would not be able to meet the academic responsibilities. Plus I would need specialized teaching methods from my teachers, but worst of all, I would not be welcomed by my classmates.

A couple months after I turned 16, I started going to school for the first time in my life. It was a school for students with disabilities near home. I attended for five years. During that period, I exceeded expectations despite my lack of formal education and not being able to speak English. My age became a legal battle because the age limit for enrolling in special education was 21. My mother and I requested permission from the Paterson Board of Education. The request was approved. I was able to stay the four years and obtain my high school diploma.

Then, I started college, which became a bumpy road. I faced many challenges. Academically I wasn’t ready because back in high school I didn’t receive the support needed to succeed in college. I was still learning English. Also I was having a hard time balancing my class schedule, homework and my personal life. Moreover, my physical limitations and ability to understand the class material made it so hard to meet the academic responsibilities. Plus I was discouraged by former counselors who assumed I would not be able to make it.

I had lost faith in myself and didn’t trust people anymore. I was desperately searching for a purpose to keep going. Then one day, in an unexpected way, I found the purpose I was looking for. Some might call it coincidence or destiny. I call it God’s miracle: It was my purpose to not give up.

Recently I published a memoir. In “I Made It!” I share my life experiences and how I made it despite the challenges that I had to deal with. The purpose of my book is to show our society that living with a disability, physical and/or mental, should not prevent an individual from developing her full potential as a human being. In my book, I want to create an awareness about prejudice towards people with disabilities. I didn’t let the label CP prevent me from developing my potential.

My next goal is a documentary based on “I Made It!” I passionately believe this documentary will have a much-needed impact on people facing similar challenges as well as educating the public on the realities of what it means to be disabled in our culture. Unfortunately, I lack the financial resources to do this film, but I am working on getting the support needed to get this project underway.

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Juana working at her college library.

To learn more about Juana’s project, visit her website Juana M. Ortiz for contact information.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When You Ask a Child on the Autism Spectrum to Stop What He or She Is Doing

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I like to try to explain things by using bodily functions as examples. Because often with people on the spectrum, some of the things we do seem less important to others. But for us, it’s a need, not a want.

Imagine you really had to go to the bathroom, and you finally get to go, but then someone makes you stop and go with them to the grocery store instead. Or go eat lunch. Or say it’s time to do dishes.

That would seem like a form of punishment or torture, right? Not only would it make you upset, but it would make you feel incredibly uncomfortable. The whole time you’re supposed to be doing this other activity, and all you’re going to think about in the back of your mind is going back to the bathroom and finishing your business. You might even plead with the person who made you stop!

“Please!? I’m almost done. Just a few more minutes. I’ll be quick. I’ll come right back and go with you…”

Now imagine a little kid, one who hasn’t had as much practice with social cues or “appropriateness,” or who needs a little more help in areas you might do quite well in (after all, adults have had more practice). Imagine that he’s watching cartoons (or playing with Legos, or whatever), and you need to leave to run an errand or it’s time for dinner, etc.

You tell him it’s time to go. To stop what he’s doing and come with you. To some on the spectrum, that can be a really hard thing to do. Their brains and their bodies might be telling them it’s not time yet. They’re in the middle of something. They can’t leave yet, they’re not finished.

So you get a little more stern: “I said let’s go!”

It registers that they’re going to have to leave before they’re finished. So they get angry or upset or start crying. Maybe they plead with you: “Please! Just a little bit longer! It’s not over yet! I’m not done!”

To you, this may seem like defiance (and hey, I don’t know your kid — maybe it is), but more than likely it’s because they didn’t have enough time to prepare for what was going to happen. They didn’t have time to finish what they started.

Which is why transitions are a big thing within the autism community — transition songs, transition actions or “warnings.” I know some people who use timers, and some who sing the clean-up song while they’re cleaning, then they’re able to use it as a warning. They can start singing it in the background while they’re playing to let them know what’s to come. 

It’s also one of the reasons routine can be such a big deal. With routine, they know what’s coming. They know they have enough time to finish their show, because every time it ends, that’s when we do whatever comes next.

So, the point I’m trying to make with this is — remember to try to be patient.

Nine times out of 10, they’re probably not trying to give you a hard time. They’re the ones having a hard time and communicating and expressing that stress or frustration in the only way they know how.

Instead of getting upset, try to find ways to help them through it.

At bedtime, we do the exact same thing every night. We never leave the house after that bedtime routine should be started. We never stay out longer than we should. Company isn’t allowed over when we start that routine (unless I know it’s not going to affect them specifically). Because their calm, happiness and understanding is important to me. And I don’t want to cause more stress and strain on them or me. Sure, it means we might not get to do some fun things, but until they understand better and can cope better, this is what we’ll do.

I suggest really paying attention. Are there situations that could be helped by making sure your kids (or grandkids or students) understand what’s coming next and better preparing them for it? So their heads and bodies aren’t shouting, “What are you doing? We’re not done! Don’t leave!”

Maybe wait until the credits are rolling to leave, or ask to help them finish their Lego masterpiece so they’ll come do the dishes.

Each kid is unique and may need something completely different than the next in order to succeed in life. And that’s totally OK. We just need to figure out what it is so we can help.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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