Chronic Illness Disability Q&As Roundups

Community Roundup: How Often Do You Think About A Cure?

When you have a condition, the prospect of a cure can inspire hope, but that hope can also sometimes get in the way of recovery. So how should you think about it?

For people living with chronic conditions, the prospect of a cure can both inspire and dishearten. After diagnosis, some organize their lives around a search for healing. Others focus on living well with their condition, refusing to be defined by sickness and cautious lest the hope for a cure distract them from the life they have.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: How often do you think about a cure? To what extent does it shape your daily reality? Some responses have been edited for clarity.

Sonya Huber:

Sonya Huber

I do sometimes think about a cure, mostly when I hear about people with rheumatoid arthritis who went into remission. I allow myself to imagine what it might be like to be fully mobile and pain-free again, but then I have to put that out of my mind. Because this is my life, this is my body, and I go forward into each day with joy only if I love and care for the skin I’m in.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Claudia Merandi:

Claudia Merandi

I never thought about my illness, Crohn’s, having a cure. I’ve only known what it is to be “sick.” But I live as a “healthy sick person.”  I never considered myself to be “that” sick. I only knew a hospital bed for 20 years and I still didn’t think I was sick. Maybe that’s why I’m still fighting. If there was a cure, I wouldn’t be who I am today and I love the person I am today. I am Crohn’s. Crohn’s isn’t me. I am everything before I am a person with Crohn’s.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.

Jed Findley:

Jed Findley

A cure? Preposterous! I never think about a cure. I am solid in the fact that Ankylosing Spondylitis is incurable. They barely have a genuine treatment right now. I think we are far far away from a cure. Thinking about what may be causes a lot of grief. Like dreaming of living comfortably in a huge house when you are barely making a living. A cure is a fairy tale and getting ones hopes up for Prince Charming is only going to lead to a huge letdown. I don’t need this kind of depression in my life. So, I don’t even dream of a cure.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941.

Saidee Wynn:

Saidee Wynn

Honestly, I don’t think about a cure that often. It will occasionally burst into the forefront of my mind, but I try to push it right back out. There may never be a cure for my illnesses in my lifetime. If I were to hold onto the belief that a cure is coming, I feel I would end up putting my life on hold.

Saidee Wynn writes about life with chronic illnesses and disabilities. She can be found on Twitter at @spwarriortweets.

Eric Valor: 

Eric Valor

Pretty much every day. I think about it in terms of my own research for a cure and about what I will do to get my life back when cured sufficiently to regain my movement. It’s my single most motivating thought.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

Farrah Kaeser:

Farrah Kaeser

On a personal level I have resigned myself to the fact that there is no cure for the conditions I have (Fibromyalgia, Ehlers Danlos, and more), and that there probably won’t be in my lifetime. In fact, doctors and scientists don’t even fully understand (and some “don’t believe in”) my conditions, so the idea of a cure seems unrealistic. Dwelling on it really doesn’t help me any, as it doesn’t change anything or move me forward in life, rather it exacerbates my depression and brings me down.

But on a professional level, it’s a different story. When I got my first diagnosis (fibromyalgia), the fact that my doctors so nonchalantly told me they didn’t even understand the mechanism behind my pain, that it would just get worse and worse, and there was no cure, good luck, flabbergasted me. So much so that I have spent the last 9 years in school for Natural Medicine. I now am completing my doctorate, in hopes of finding a better understanding of what’s happening on a neurological and cellular level in the body,  as well as possibly developing either natural or integrative options to help manage symptoms. I work every day for a cure for my conditions and others, but am aware that while my work is important and will hopefully be beneficial, likely we will not see notable results in my lifetime.

So, in conclusion, the answer is two-fold. It is both an ever-present dream and goal, but one that I do not place any hope in for myself. I hope I am surprised by a development that can benefit me. That would be life changing! But for me personally, clinging to an unlikely dream does more harm than good. But working towards making things better… that’s the key.

Farrah can be found at Twitter at @FarrahGarland and Facebook at @FarrahGarland. She blogs at www.workshark.me

Forester McClatchey:

Forrester McClatchey is a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

I don’t think about a cure very often. Partly this is because my illness (Type 1 Diabetes) has become so manageable that it’s rarely a source of great suffering. Partly it’s because I don’t want to get my hopes up. Now that I think about it, I realize that I actively avoid thinking about a cure. Here’s why. With T1D, discipline is essential to self-care. Your body is a daily science experiment, and that means you have to be a good scientist (rigorous, detached, thorough, empirical). The promise of a cure, however distant, would erode those virtues—especially the discipline—by making them seem less necessary. So I approach cure-talk with a lot of caution and skepticism. I dream about a cure, but I try not to feel entitled to getting one.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amy Nicewicz:

Amy Nicewicz

Living with Crohn’s disease has been one of the biggest battles I have ever faced. With a cure, my entire life would be different. I am used to the pain, sadness, worries, and what feels like loneliness. Every six weeks I arrive at the hospital for my treatment. I stay for a couple hours and wander the halls rolling my IV stand by my side. On the days I lose hope for a cure, I remind myself how I must live life as much as possible right now. I imagine my twelve-year-old self, lying in a hospital bed for an entire week. I was thin, frail, confused, and standing on the cliff of death. These experiences shaped me into who I am today. I aim to live in the moment more. I never forget to remind those I love how much they mean to me. Not knowing when and if a cure will come is how I power through the day. People who share the same chronic illness create their own empowering community together.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1.

Rhiann Johns:

I only really think of a cure when I am in a dark place, or when the frustrations and reality of living with a neurological condition become evident. For example, the times when I run out of ingredients while cooking.  It is times like this when I consider the reality of how these symptoms affect my life and wish I was ‘normal’ so that I could simply shop by myself instead of being so dependent on others just to get out of the house or to go shopping for me. However, in my opinion, it is not particularly productive to allow thoughts of a cure to influence or shape your daily life.  For me, doing so would only set up myself for endless disappointment and would leave me with more negative feelings and resentment toward my neurological condition.

That is why I instead to focus on the present.  By doing so, I can live the best life possible despite the neurological condition I live with and the symptoms that can cause many disruptions in my life. A promise of a cure comes with many different words such as ‘possible,’ ‘chance’ or ‘might.’  Words which are only mere possibilities and no real definites.  I prefer definites, and so I prefer the present rather than to dwell on the future and what it may or may not bring.

I will sign off with one of my favorite quotes: “Yesterday’s history, tomorrow is a mystery, today is gift, which is why we call it the present.”

Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

 

Do you have thoughts on this issue? Follow us on Twitter @FolksStories and tweet us to add to the conversation.

Chronic Illness Disability Q&As Roundups

Community Roundup: Why Should We Tell Our Stories?

Every person has a story worth telling, but all too often, those with conditions are shamed into silence. Here's what that needs to change.

When you are disabled or chronically ill, you are often denied control of your own narrative. Popular culture can treat you as invisible, except as a rote “inspiration” or–worse–something to be gawked at. Too often, then, any voice that disrupts the “status quo” or diverts from what is “conventional” is lost or even actively suppressed.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: Why is it so important for people with chronic illnesses or disabilities of any kind to tell their story? What’s lost when they don’t or when their voices are mediated or filtered?

Sonya Huber:

Sonya Huberr

Our experiences are so often medicalized, judged, and evaluated, but disabled and chronic illness people have lives as complex as any other humans. What gets lost when we don’t speak for ourselves is the beauty, dignity, humor, and urgency of our daily lives. We are the experts in living our lives and navigating our challenges.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Jed Finley:

Jed Finley

Education is the reason why sharing our stories is so important. When it comes to chronic illness and disability, we are the best teachers. Not doctors, not “experts,” not talking heads, or any kind of healthcare provider (unless they are chronically ill or disabled). We are the ones who live with our illness every single day. We know what works, or doesn’t work. We know what elevates our pain and have a better idea of how to treat it, even if we don’t fully understand it. The reason why so-called experts have the ability to speak for us is because many of us choose to suffer in silence. We can’t be silent. We need to be willing to speak and tell our stories for the benefit of ourselves and our Spoonie siblings.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941.

Saidee Wynn:

@spwarriortweets www.spooniewarrior.com

When things stay hidden, they are easily forgotten. “Out of sight, out of mind,” right? By sharing our stories, we’re demanding to be noticed. We’re refusing to be hidden, pushed aside, or forgotten. And we’re demanding that our needs be met while normalizing our normalizing our existence. We aren’t shameful secrets. We’re human beings and we deserve to be seen and heard in all spheres.

Saidee Wynn writes about life with chronic illnesses and disabilities. She can be found on Twitter at @spwarriortweets.

Forester McClatchey:

Forrester McClatchey a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

Is it “important” for such people to tell their stories? Perhaps. Probably. These stories wipe away what Virginia Woolf called “the cautious respectability of health,” and remind us that we are fundamentally alone with our bodies. Polite society prefers to ignore that relationship, and sick/disabled people are uniquely suited to break the silence. Having the temerity to do so educates the healthy and makes sick/disabled people feel slightly less alone.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amber Blackburn:

Amber Blackburn

People who live with a chronic illness must share their story. We can’t expect others to understand what we go through on a daily basis if we never tell than. We can’t expect things to change if we keep our stories hidden. Change will never happen if we don’t open up and share our daily struggles.

Amber Blackburn is 32 years old and was diagnosed with lupus six years ago. She has been blogging and acting as an advocate for a year and a half. She can be found on Twitter at @LupieWarrior511.

Corinne Meirowitz:

Corinne Meirowitz

I have a friend who works in the patient advocate community. He likes to say that he thinks of himself as temporarily able bodied. I think this is brilliant, because the truth is at some point in everyone’s lives, a part, or multiple parts of their body will stop functioning at their best. So whether you are currently ill or not, every single person can benefit from the stories and life experiences of those who are chronically ill and / or disabled. Telling our stories also serves as vital connection and lifeline to others when so often there are feelings of isolation. Growing up I did not see bodies or lives like mine portrayed in the media. As an adult I now seek out stories of those who are ill and disabled and feel seen and understood when I read these different tales. My greatest wish is for the next generation of boys and girls to not have to hunt to find themselves represented and heard.

When our voices are mediated or filtered, what is often lost is the grey matter. No individual is just one thing. When you’re reduced to either a cautionary tale or an inspiration, that is so far from the entire story. Human beings live in the grey, messy, can’t tie it up in a cute little bow, middle. The middle is where it gets interesting…

Corinne Marie is a writer, speaker, and advocate living with a rare chronic illness. She can be found on Twitter at @rin.marie10.

Erin N. Valor:

Eric N. Valor

The loss is in the perspective from the patient’s point of view. When people don’t see a patient as having a valid issue and treat them as if they were mere children (unless they are, in which case caveats still apply), the human race loses valuable insight into the experience of living and coping with chronic disease. I have become very knowledgeable about my disease (Amyotrophic Lateral Sclerosis, ALS, or Lou Gehrig’s Disease) to the point where we can have long discussions about the latest in research into it. I have also become a resource for other patients around the world. Without my ability to communicate as I am doing right now I would not be able to do my own research and would not be able to relay that to other patients as I have been doing since my diagnosis 13 years ago.

Eric N. Valor has ALS and is a self-taught Information Technology professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He continues to push the limits of patient-led advocacy and awareness, contributing to research into a treatment for ALS, and assisting other PALS with knowledge about and coping with the disease along with helping them with communications technology. He can be found on Twitter at @surfiving.

Effie:

Effie @risingabovera

By telling your story you can find like-minded people or your tribe so to speak. It’s healing to share your story because you will find someone out there has gone through the exact same thing as you. It’s a lot building connection, gaining relationships and support. Often times, depression, grief, loneliness can manifest with these conditions and it’s important that people reach out even if it’s to a family member, close friend, or a person you meet on the internet. Everyone opens up at their own pace so I don’t think anything is lost but when someone is mediated or filtered it can bring them person back into their shell. Nobody should feel oppressed or told that what they are saying needs to be changed. Everyone has a right to express how they feel. It’s of equal importance that with those with these health struggles really deal with the emotional aspect of the disease. Holding feelings, thoughts and ideas inside only makes the person feel worse. The only thing that would be considered lost if someone were to not tell their story is help. When we share with others we gain more wisdom, gain more clarity, and can find solutions to answers we were seeking. Lastly, without opening up to share their stories there would be a lack of understanding. There are still misconceptions and misunderstandings when it comes to chronic illness and disability, so keeping silent will only fuel this problem even more. When we make the effort to create change society limitations can slowly be lifted and we can all shift to a different level of understanding and eventually, empathy. Empathy is what is needed for people living with these health struggles and once we can shift people’s mindsets to this we will see less judgement and more open-minded conversations happening between healthy individuals and the chronically ill or disabled.

Effie has been living with juvenile rheumatoid arthritis for almost 15 years and is a patient and awareness advocate. She lives in Chicago, IL and can be found on Twitter at @risingabovera.

Chronic Illness Disability Q&As Roundups

Community Roundup: What Does It Mean To Be Vulnerable?

Allowing yourself permission to be vulnerable is important when facing chronic illness or disability. Here's some advice on how to do so.

Learning to be vulnerable is an important part of being human. It’s what you have to do to fall in love, to have a child, to grieve, and to accept yourself… especially in the face of chronic illness or disability.

That’s why, this week, we asked our community: what does it mean to be “vulnerable?” From learning to ask for help, to resisting the urge to feign stoicism, here’s some of the best insights on the true definition of vulnerability that we heard from our community.

Also, a reminder: for next week’s roundup, we’re asking our community about the fictional character from fiction (TV, film, literature, video games, or other) that has inspired them most in the face of disability or illness. So follow Folks on Twitter and tell us what you think!

Creative Commons image by Sandor Weisz

Roundups

Community Roundup: New Accomplishments, Post-Diagnosis

Getting married. Writing a book. Visiting Norway. These are just some of the things our readers have done after being diagnosed.

When you’re first diagnosed with a health condition, it can sometimes feel like the end of things. But even in the face of challenges, the nature of being human is to continue, and to persevere.

That’s why, for this week’s Community Round-Up, we asked Folks‘s Twitter followers: What’s something you never thought you could accommplish when you were diagnosied, that you now do?

The answers we received ran the gamut, from people telling us about how diagnosis spurred them to get married, travel new places, and finally sit down and write that book they were thinking about. But other responses we got were deeply honest and human, explaining that, for them, diagnosis didn’t have many bright sides, and we thought it was important to include those too.

For next week’s roundup, we’re asking our followers“Some people identify as disabled. Others don’t. How do you identify and why?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.

Creative Commons photo by Kristoffer Trolle. Additional reporting by Josh Andrew.

Roundups Uncategorized

Community Roundup: What’s Your Favorite Thing About The Disability Community?

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason. This week, we asked […]

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason.

This week, we asked members of Folks’ Twitter community what their favorite thing about the chronic illness and disability community was. What many of the answers we received touched on was this concept of ‘chosen family’ and how much online communities can help support someone who is dealing with a life-changing illness or condition.

Also, this week we’re asking our followers: “What’s something you never thought you could accomplish when you were diagnosed, but which you successfully do now?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.

Additional reporting by Josh Andrew.

Creative Commons photo by Lindsey Turner.

Q&As Roundups

Community Roundup: What’s The Best Advice You’ve Ever Received About Being Chronically Ill?

Tell your story. Advocate for yourself as a patient. Replace your old dreams or new ones. Here's some great advice on being disabled or chronically ill from our Twitter community.

Life is full of unwanted advice, from odious mansplainers to outmoded counsel from gently clueless elders. Unfortunately, when you’re chronically ill or disabled, this dial can often feel turned up to 11, as friends and acquaintances bombard you with advice that–while well-meaning–can often feel fairly clueless.

But that’s not always the case. Sometimes, someone actually gives really great advice, and it makes a profound impact on our lives. So for this week’s Community Round-Up, Folks‘s Twitter followers what piece of advice they had received on being disabled or chronically ill that was actually transformative to the way they handled their condition? What follows is some of our community’s best advice.

Also, this week we’re asking our followers: “What’s the most insightful question you’ve been asked about your disability or chronic illness?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.

Additional Reporting by Josh Andrew.

Chronic Illness Roundups The Good Fight

Community Roundup: How To Be A Good Ally To The Chronically Ill

From baking a sick friend a casserole to protesting with them on the front lines of the disabled rights movement, here are some of the best ways to be an ally to the chronically ill.

In today’s social and political environment, much is said about the importance of allyship to disenfranchised groups fighting the good fight, such as the #MeToo campaign against sexual harassment, #BlackLivesMatter, LGTBTQ activist orgs, and more.

The chronically ill and disabled need good allies just as much, and sometimes more, than those groups. But what does being a good ally to those dealing with health issues actually mean, and how does one go about becoming one?

So through our Twitter account, we asked our community: what does it mean to be an ally to someone with chronic illness or disability? We learned a lot from the answers we got back. Here’s some of the best:

What do you think? What’s the best way to be an ally to someone with chronic illness or disabilities? Follow us on Twitter @folkstories and let us know!

Q&As Roundups

Community Roundup: Imagining A World Where Disability Is Normal

From workplaces offering 'good health' days instead of sick days, to universal, affordable health care, a world in which it is 'normal' to be disabled or chronically ill doesn't sound dystopian at all. In fact, it sounds like heaven.

What does it mean to be normal? There’s lots of ways to answer that question, but if we’re being honest, most people would probably not consider chronic illness and disability as part of the recipe. But that’s wrong. In our lifetimes, every person will get sick, manage a health condition, or become disabled, so it’s *just* as normal–if not more so–to be dealing with these issues as it is to be walking around in so-called “good health,” with no health conditions whatsoever.

That got us thinking. If the average person’s definition of normal is so far off-base, what would the world look like if people with disablities got to define the idea of a ‘normal’ life?

So through our Twitter account, we asked our community, and the answers we got back were amazing. Here’s some of the best we received:

What do you think? What would the world look like if people with chronic illness or disabilities got to define the definition of ‘normal’? Follow us on Twitter @folkstories and let us know!