How the Stigma of Opioid Medication Hurts Those With Severe Chronic Pain

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I understand why the news talks about the opioid crisis in the way it does. It is very real, very serious and needs to be addressed.

However, they are doing a disservice to patients who require opioid pain medication just to make it through the severe pain they have every single day.

Not all patients abuse, misuse or turn to street drugs.

I have required narcotic medication for more than a decade. I have never doctor-hopped. I have never been a drug-seeker at hospitals. I’ve never abused my medication or taken more than I am supposed to. I am responsible and take it as prescribed, just as I take my other medication for my health issues.

The chronic pain specialists I have seen have said that the 30 percent pain relief I get from narcotics is the most I can ever expect to get. Because kidney pain is just that bad. Opiates can’t even help 50 percent of my pain. But, with how painful chronic kidney stones are, you can bet I am extremely grateful for that 30 percent of pain they ease for me.

Most people have heard about how painful kidney stones are. I have a kidney disease that I was born with which causes me to constantly make kidney stones. I pass an enormous amount of tiny ones on a regular basis and have needed emergency surgery on some larger ones.

I also get chronic kidney infections, which are extremely painful as well.

As it is, even with strong pain medication, I have days where I just can’t handle the pain. I truly don’t know how I would have made it through the last decade without pain control. I would not have wanted to live. The pain is unbearable. It is so severe.

 

Not everyone is irresponsible with their medication. Some people are. They need help and understanding. But, patients like myself who are not abusing these medications are being treated like addicts by the people who watch a news program or read an article that talks about how every patient is an abuser.

I don’t tell people what meds I take because I’ve sat in a room with acquaintances, listening to them all talk about how no one needs opioids. That they are never necessary. That all patients abuse them and turn to street drugs.

A stigma has been created and is being nourished. I have to hide that I take medication, lest I be judged and treated poorly. Yet, none of these people talking down about patients who take narcotics have any clue that I take pain medication. Why? Because I am never high. I despise feeling loopy or out of control. I don’t take enough to impair me. I take enough to take the edge off of my severe, daily, constant pain.

Please, the next time you go to judge all people who take opioid medications because of something you saw or read about, think about what you are doing. You may be talking down about someone who is sitting right beside you.

It’s happened to me.

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What I'm Thankful for in the Midst of My Rare Kidney Disease

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I have a disease that is commonly referred to as focal segmental glomerulsclorosis (FSGS). It’s a kidney disease, a horrible one. In 2013 it changed my life forever. From December of that same year I would have no kidney function and would require frequent dialysis for the rest of my life. I’d never been in the hospital or even had a blood test. It’s strange how quickly a life can turn upside down.

You may think I’d be living in a deep depressive state. It’s true that for the past three years I’ve struggled with my mental health. I’m willing to admit that because for a long time, I struggled by myself and didn’t know how to talk to anybody about this strange, rare disease I had. I think when it’s a rare disease, you are thrown into an even deeper hole of people seemingly having no investment in researching your condition at the level they would with a more common disease, and that can be really sad.

Surprisingly, despite every bad thing about my circumstance, I am quite grateful. Here are the reasons why.

1. Medicine

If it wasn’t for the fairly modern invention of peritoneal dialysis, I would not be alive today to write this. It astounds me that before the late 1980’s, it was a death sentence to have what has afflicted me for over three years now. I do hope that kidney medicine advances substantially, though, as this is the only option for me to once again have a healthy life. It will take the invention of some kind of artificial kidney that can be implanted into me like a kidney transplant is so that the biological impacts of scarring cannot affect the new organ. At the moment they are developing medicine more and more, and for this I am grateful. 3-D printed biologically grown kidneys are of no help to me. Though, I need an artificial or robotic technology that will do the job of a working kidney. In the future when this is finally possible, I will be forever grateful.

2. Family

Family is something that will always be important to me. Especially because of how much I rely on them in daily life. I am able to achieve many things I probably would not be able to because of my family. Why would I not be grateful for them? As my family grows, so does the amount of kind people who I know genuinely care for me. Wherever I go and however successful I am while I live and thrive on this planet, I hope my family will always be there sticking by me like they always have done in the hardest times of my life.

3. Talent

There is nothing better than knowing exactly what you want to do in life. For me, this has, for a long time now, been writing. I once wanted to be a doctor, a fireman, an astronaut and a zoologist, so my career prospects were quite varied. Much like any job in life though, there has to be some iota of talent that presides inside a person for them to do well. It seems that I’ve always enjoyed writing, which gives me a certain special kind of confidence that makes me determined that I will become a great writer of amazing things. I have never been that big headed or sure of myself. This is why when I look at things I have written, it cheers me up to see that this is stuff I would want to read myself. It’s always good to be your own biggest fan, it improves your personal outlook of life substantially.

4. Hope

When I would sit in silence in a dark, cold hospital room on a hard bed poised upright, I needed hope. It was the most important thing I could muster up inside my confused mind to even comprehend what was going on in my life. Hope would allow me to begin to think of the future again on the darkest of days. When I was lying there in pain thinking about whether I should “end it,” there was hope.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world

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Sarah Hyland Responds to Body-Shamers in Post on Twitter

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Sarah Hyland explains how her health challenges have affected her body and speaks out against body-shamers.

Read the full version of Sarah Hyland Responds to Body-Shamers in Post on Twitter.

Read the full transcript:

Sarah Hyland Has a Point to Make About Weight Fluctuations and Chronic Illness

The “Modern Family” star is speaking out against her body-shamers about physical changes in appearance due to an illness.

The actress has Kidney dysplasia and underwent a kidney transplant in 2012.

In her post, Hyland says she hasn’t had “the greatest year” and that it’s brought “a lot of changes and with that, physical changes.”

Hyland said she’s striving to be “as healthy as possible” and is not “promoting anorexia” as people have claimed.

She also acknowledged how hard it can be to watch her body change, calling out the effects of Prednisone.

Prednisone is a corticosteroid used to treat inflammation in the body and known for causing weight gain, including in the face.

“Am I bothered by my appearance right now?”

“Because I know that my face is swollen from medication that is saving my life.”

“For those on prednisone I know what you’re going through and I commend you sticking it out as I have.”

“Don’t let other’s comments alter any part of you! Love and positivity is what we need most.”

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Sarah Hyland Responds to Body-Shamers in Post on Twitter

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“Modern Family” star Sarah Hyland is speaking out against her body-shamers with words that may resonate with anyone who has experienced physical changes in their appearance due to an illness.

In an essay shared on Twitter, Hyland responded to comments she’s received about her body in response to her recent Instagram posts as well as her appearance on the ABC television remake of “Dirty Dancing” that aired Wednesday night. The actress has kidney dysplasia and underwent a kidney transplant in 2012.

In her post, Hyland says she hasn’t had “the greatest year” and that it’s brought “a lot of changes and with that, physical changes.” Explaining those changes, she wrote:

I have been told I can’t work out. Which, for me, is very upsetting. I am an activist for activity (and for eating junk food in bed but it’s all about balance right?) I love to be outdoors. I love to be strong. (I’ll be using that word a lot.) Strength is everything. Being strong has gotten me where I am. Both mentally and physically. I am not a fan of “being skinny” which many of you have told me that I am too much of. “Eat a burger, your head is bigger than your body and that’s disgusting” and you’re right! I should eat a burger! Cause they’re fucking delicious! But guess what. I do. And again, you’re right. No one’s head should be bigger than their body but considering I’ve basically been on bed rest for the past few months, I’ve lost a lot of muscle mass. My circumstances have put me in a place where I’m not in control of what my body looks like.

Hyland said she’s striving to be “as healthy as possible” and is not “promoting anorexia” as people have claimed. She also acknowledged how hard it can be to watch her body change, calling out the effects of prednisone — a corticosteroid used to treat inflammation in the body and known for causing weight gain, including in the face.

Since I’m here…you may wonder. Am I bothered by my appearance right now? Well it’s never fun to look in the mirror and see your hard work at the gym fade away or have your legs be the size of one’s arms. But I know that when I get clearance I will be able to get back to the STRONG, lean and fabulous self I know I can be. You all will probably have something to say about that as well but it won’t affect me. I don’t mind when you say that I look pregnant. Or fat. Because I know that my face is swollen from medication that is saving my life. For those on prednisone I know what you’re going through and I commend you sticking git out as I have.

She concluded by encouraging others to stay positive in the face of judgment. “Don’t let other’s comments alter any part of you! Love and positivity is what we need most,” she wrote.

Photo courtesy of Disney ABC Television Group via Flickr
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What Chronic Kidney Disease Taught Me About My Life

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I was diagnosed with end-stage renal failure when I was 12. The doctors were unable to figure out the cause, but under the circumstances, they just told me to undergo dialysis three times a week.

In the beginning, I assumed that it was only for a short period of time and then everything would go back to normal. You see, the enormity of the fact that my kidneys had failed permanently did not sink in just yet and my mother was too shocked and heartbroken to make me understand the entire truth. But when weeks turned into months, then years, and I was still forced to go to dialysis, I began to comprehend the fact that my life would never be the same again.

A chronic kidney disease (CKD) patient on dialysis is poisoned by everything that they put inside them. The term “bloody hell” takes on a very literal meaning for people on dialysis. It takes almost 12 hours to get over the side effects of a single session of dialysis, which leaves us with only twelve hours of relative freedom before the beginning of another session.

As a teenager, I spent more time at the hospital than I did at school. Obviously, I envied others who could eat, travel and live as they please, whereas I had to depend on a machine just to survive each day. But slowly I also began to realize that despite my debilitating health, the fact that I am alive is a huge privilege in itself. It does not matter if I am unable to live the way I want, I am still capable of experiencing something and the pain I felt during dialysis was just a reminder that my life is worth living.

The fact that I had to undergo dialysis regularly as a teenager caused some major changes in my personality. It made me understand the importance of having a sense of humor. I realized that all you need is a little bit of imagination to find humor in the bleakest of situations. You could actually turn your day around with laughter. As a 12 year old kid on dialysis, I felt immensely better when I imagined bonking my scary doctor on the head with a dialyzer for not allowing me to drink enough water.

Being a CKD patient for 10 years, I discovered that pity usually comes at a price. In high school, I was labeled as “that poor girl who is sick” and was automatically excluded from most group activities. People usually do not want to take unnecessary risks with the sick kid. This behavior made me more reluctant to share the details of my ill health with my peers in college.

Although it was quite tough at times to conceal my condition from my friends and classmates, and I had to come up with new and creative excuses every time I was absent from class, I still got a chance to feel like a normal kid after a long time. And in the process of managing both college and dialysis, I learned the meaning of perseverance, efficiency and time management. What others did in 24 hours, I learned to manage in 12.

I finally underwent a transplant last year. Now when I look back at my life I see that I have come a long way from that immature 12 year old who constantly complained about her boring life. Most people assume that I had a pretty terrible adolescence which could not have been farther from the truth.

CKD taught me so many things about myself which I could not have learned in any other way. The knowledge that I could pull through this kind of adversity gave a real boost to my self-confidence. It made me both stronger and wiser as a person. Although dialysis was a pretty painful process, I believe I am better off for having lived through this experience than I would have been without it.

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My Not-So-Typical Wish List to Santa as Someone With Kidney Disease

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“Santa! I know him!” “Buddy the Elf, what’s your favorite color?” “I just like to smile; smiling’s my favorite.” These are quotes from my favorite modern Christmas movie, “Elf.” I’ve seen this movie four times within the last two weeks. Do you what that means? The holidays are upon us! With less than 10 days to go, what follows is my wish list to Santa.

Dear Santa,

I hope you don’t find it odd that I am writing you again after a 25-year hiatus. While I may have stopped writing, I never stopped believing in the magic of the holiday (chalk it up to being a kid at heart). The days between Thanksgiving and New Year’s have always been, and continue to be, my favorite. From the sights and sounds to the joys of celebrating with family and friends, I never want the season to end.

In the past few years, the magic of Christmas has meant even more to me because I am truly grateful to be alive. Three years ago, a couple weeks before Christmas, my world was turned upside down. I spent 10 days in ICU where I was eventually diagnosed with end stage renal (kidney) disease and had to start dialysis immediately. The details are a little fuzzy because I was so out of it, but my mom told me at first the doctors didn’t know what was wrong or if they could save me. She also told me she spent a lot of time praying. Looking back, the prayers definitely helped but I believe so did the magic of the season.

As a grown adult who almost didn’t make it, I’m not sure I have any right to be asking you for gifts, but the little kid in me has a few requests. This list is pretty far from traditional, but if you’ve been following along, you know my life lies in nontraditional these past few years.

1. More experiences. Granted, I have a chronic illness and I spend more time being a patient than not, but I have good days. And on those days, I want to go out and experience as much as possible with as many people as possible. This helps me feel “normal.” Don’t be afraid to invite me out; I may not always be able to do the things you do, but it’s still nice to be included.

2. Listen to me. There isn’t a better feeling in the world when you truly feel like you’re being listened to. I haven’t always been in a place where I want to share my story but I’m getting there. And now that I have a better understanding of what’s going on with me, I want to talk about it. Before being diagnosed I can honestly say I knew less than three people with kidney disease and those people rarely talked about it. I’ve come to realize it’s not a widely discussed disease, but it should be because it’s a leading causes of death. Does dialysis hurt? I want people to ask me questions. Do you know I don’t pee? Let me talk about my new normal. Did you know I’ve had diabetes for 20+ years? Let me stress to you the importance of getting regular check ups and not ignoring your health.

3. A good pair of headphones. I spend most of my time listening to music or Ted talks while I’m at treatment and I can’t tell you how many headphones I’ve gone through in the last few years.

4. Acceptance of myself and the mistakes I’ve made. It’s been a hard pill to swallow trying to make peace with the fact that I was mostly responsible for my kidney disease. My doctors have told me to not be so hard on myself because this would have happened down the road but down the road wasn’t at 30. Had I not thought I was invincible and actually managed my diabetes, I potentially could have held dialysis off another 10 years and gotten to accomplish a few more things on my list. I can’t change the past, I know this, and I wouldn’t want to now anyway, but it would be nice to have those voices in my head, the ones that pop up from time to time, telling me I royally screwed up, quieted.

5. Hoodies. Zip up ones to be exact. The warmer the better. I wear two to dialysis each night (it’s that cold even in the summer). They don’t even have to be that nice because I cut holes into the upper arm so the nurses have access to stick my needles in.

6. Visitors. In three years I have had 34 procedures. Imagine, if you can, all of that time spent in hospitals and out patient facilities and then the time it takes to recoup. It gets lonely. It’s not always easy for me to get out but I’m usually well enough for people to stop by. Come visit. I’ll supply the wine and who doesn’t like wine? And I get it, people are busier than ever, so if our schedules never sync up, at least reach out. A simple text letting someone know you’re thinking of them can go a long way.

7. A nose warmer. If you haven’t heard of this, don’t worry; I hadn’t either until this past year. But it’s genius! I’m always cold plus they keep dialysis centers really cold. The one part of my face I can never keep warm is my nose and then one of my technicians explained to me the awesomeness of a nose warmer. Now I need one.

8. Easier days for my mom. I know that’s pretty subjective, but however you work that out would be great. My mom works two, sometimes three jobs (to pay her bills and some of mine because I cannot work full time), has a couple of her own health issues and is my main caretaker. I’m at the age where I’m supposed to take care of her and it breaks my heart that I can’t be that daughter right now.

9. Dialysis outfits. AKA pajamas. I have two “outfits” I rotate but that means constantly having to do laundry. Fleece bottoms for sure since I’m always cold. And tops – Old Navy has the best and they’re usually on sale for $5. Short sleeves since my access is in my upper arm these days. And honestly I could care less if they’re matching or not.

10. A boyfriend. I know this is more Cupid’s area of expertise, but I know you’re friends so I’m asking for you to put in a good word. I want a guy who is interested in long term, who has a sense of humor, and good looks wouldn’t hurt either. Most importantly I want a guy who can understand dating someone who is chronically ill. I would like to go on just one date that doesn’t end with the guy telling me to get better soon. Clearly he wasn’t listening the entire time, even a transplant isn’t a cure.

11. Strength. I know this really comes from within, but just like acceptance, I could use a push in the right direction. You can’t have the good without the bad; I know this. The bad days show you what you’re really made of; I know this too. I’ve said these very words to other people before. Yet as of lately I seem to fall apart at the bad days. I question how I’m going to get through the latest issue, and although I always do, I make myself even more upset in the process. Come to think of it, I have the strength, but what I need is a good coping mechanism. Or 12, you know, if they’re on sale somewhere.

12. A living kidney donor/transplant. I know, I know, this may be a long shot but it has to be said. It’s all I wish for on my birthday, on other people’s birthdays, for the past few Christmases and New Years. I figured maybe if I write it down it’ll have more of a chance to come true. Don’t get me wrong, I’ve been so fortunate to have many people come forward for testing, but non have been a match. So I am still searching for my hero. And I know I’m working through some issues currently to get me back on the transplant list, but when that day comes, because I am confident it will, I would like to have a donor lined up.

While this list is in no particular order, I do have my top picks. When I was a child, I would go back over my list and star the things I wanted the most since I knew you couldn’t get everything. Typing this letter to you makes it a little more difficult to do that so I will just lay it out here for you. Understanding and acceptance are at the top of my list followed by new coping mechanisms for the not so good days and the nose warmer (mostly because it looks interesting).

Lots of love,

Anjelica

P.S. I promised my niece and nephew I would put in a good word for them when I talked to you next. They’re my world so I hope they’re on the nice list!

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