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Chronic Illness Q&As Roundups

Community Roundup: What’s The One Thing People Should Know About Chronic Illness?

We asked Folks' social media followers what the one thing they need others to understand about their experience. Here's what they told us.

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It’s hard to understand the experience of chronic illness if you’re not chronically ill yourself. So when the topic comes up in conversations, even well-meaning people can end up being insensitive at best, and offensive at worst.

That’s why, for this week’s Community Round-Up, we asked Folks’ social media followers: What’s the one thing you want others to understand about living with a chronic condition?

Amy Nicewicz

Amy Nicewicz:

I want you to know that every day is a battle. I may pretend that I am alright when I am not because I do not want to burden you. I need you to be there for me because some days I don’t know how much more I can fight. I want to be around you but some days I do not feel well and need to rest. The appointments with doctors and specialists never end. Life is not easy. Fighting illness can feel lonely. I need your understanding and your time. I need you to stay by my side and never leave me behind.

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:

Rhiann Johns

I suppose if I could choose one thing that I wish people could understand about living with a chronic condition is that appearances can be deceptive; you can’t judge a book by it’s cover.

I can have a smile on my face but still be overwhelmed by numerous symptoms. Very often, a smile is a mask that I wear to let others know that I am OK when in reality I am feeling anything other than fine. I can be bothered by pain, fatigue, dizziness and weakness throughout my lower limbs but still the mask I wear stays on, hiding the physical and emotional effects that my body has on me. It’s a smile that conceals so much.

On my face I can wear make-up and look carefree, healthy and ‘normal.’ The truth is that it conceals the very dark circles beneath my eyes from the extreme exhaustion after endless nights battling insomnia caused by intense pain in my legs. A light foundation and blush that gives me a healthy, natural glow that hides my true pale, and sickly looking complexion. I wish that people would not judge based solely on what is in front of them. To dig deeper and see our true selves: the truth that we often try so hard to hide but is there if others look hard enough.
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.  

Jed Finley:

Jed Finley

Our conditions are chronic, meaning life long and incurable. We understand people mean well and want to help, but to those who want to share with us diet, exercise, herbal, and other lifestyle treatments, believe us when we say: we’ve probably considered and/or tried it. Yoga is great for you, but for me it hurts. I have so many dietary issues it would make your head spin. Suggesting your latest diet fad might not take into account what I can and cant have. Fish is supposed to be amazing for me! I’m allergic to fish. You want to know the best way to help us? Stop suggesting and start asking. Take time to learn more about your chronic illness friends before you start throwing out get well quick schemes. We love your time and support. That’s what will help us the most.

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. 

Sonya Huber:

Sonya Huber

The one thing I wish people knew about living with a chronic condition is that invisible really does mean invisible. Many people have an irrational impression that they can “tell” who looks sick and who looks well, or that a disability should be visible on the body. The constant surprise I face–and the “but you don’t look sick” comments–are meant to encourage, but after day after day of hearing them I get the impression that my daily experience is not believed by people who mean to be supportive. Being complimented for passing as non-disabled ends up being such a sad experience for me, because it implies that disability is a category I should be happy to avoid.

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.

Eric N. Valor:

Erin N. Valor

The reality of living with a chronic condition is that it can be extremely isolating. Whether it be pain, skin conditions, neurological issues, etc., people with chronic conditions often cannot engage in social engagements and/or may be quite volatile in mood due to their condition. It’s not that they are hostile or anti-social. Chronic conditions are extremely frustrating. Patience from others is necessary and appreciated.

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.

 

Claudia Merandi:

Claudia Merandi

My reality is: I have a chronic illness, not a curse. There’s strong medications and pain associated with my Illness. It’s a burden on friendships, on intimacy, on work, but it’s my reality of living with a chronic illness. How you cope is how you get through living with a chronic illness. We all cope differently. Finding your coping mechanism is key.

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.


Want to be part of the Folks community? Follow us on Twitter (@folksstories), Instagram (@folksstories), or Facebook and join the conversation.

Creative Commons photo by tamckile

Chronic Illness Disability Q&As Roundups

Community Roundup: How Do You Talk To Your Friends And Family About Your Condition?

You're past the diagnosis. Now what do you tell your loved ones?

In the days following a diagnosis, some turn naturally to their friends and families for support, but for others, it’s more complicated. Even if they mean well, loved ones might not know how to accept your new reality, or support you. Even if they do, though, opening up to the people you know most can be a fraught and vulnerable experience, filled with doubt. That’s why, for this week’s Community Round-Up, we asked Folks’ followers: How do you talk to your friends and family about your condition?

Claudia Merandi:

Claudia Merandi

When I finally broke my silence about my illness, I broke it big time and I wrote a book. Friends and family felt as though I had been living a secret life for 30 years. Because depression comes with my illness, I was embarrassed to talk with people about it. I was raised to be strong and being depressed meant being weak. At 50 years of age, I know that not to be true. Crohn’s Disease has a stigma attached and it’s not a pretty one. If I could give chronically ill people advice, it would be to educate your friends and family about your illness, especially your spouse. When you break your illness down in different pieces for people, they are more apt to understand and accept it.

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.

Amy Nicewicz

Amy Nicewicz:

Talking to people about my illness is not always easy. I worry I will be left behind, unwanted, or misunderstood. I find myself living in fear which hinders my mental health. When the time is right and I have built trust with an individual I will eventually open up. After I share my struggles I usually feel a weight of burden lifted because I have nothing to hide and can be myself. If the person is accepting, I offer to answer any questions they have and spread awareness. My illnesses are a part of my life but I work to overcome them so I do not want them to be the center of attention all the time.

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. 

Sonya Huber:

Sonya Huber

Because my pain makes me really irritable sometimes, I try to notice as soon as I’m feeling pain so that my mood isn’t perceived as angry and/or my family members don’t take it personally. In general with family and friends I am trying to be more vocal about the effects of the disease so that they know it’s always with me and always on my mind. I often find that I have to tell friends that having my cane isn’t necessarily a “bad” day and that walking without my cane isn’t necessarily a “great” day.
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.

Eric N. Valor:

Erin N. Valor

I tend to be clinical in such matters. So I explained what ALS is, what the prognosis is, and what I planned to try to do about it. My family already had an idea what ALS is and were quite unhappy with the news. My friends had no idea but were equally unhappy. I find with such news that you can only be matter of fact with it.

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.

 

 

Saidee Wynn:

Saidee Wynn

The way I talk about them depends greatly on who I’m talking to. When talking to someone about my illnesses for the very first time, I’m sure I resemble a hummingbird as I flit from issue to issue and symptom to symptom, attempting to explain how all the pieces connect. I attempt to educate while spreading awareness.

With close friends and family, I talk about it like an annoying younger sibling that follows me wherever I go, causing trouble all the way. I might whine, exclaiming “my freaking EDS is kicking my butt again,” or something more explicit, but the focus always tends to be on what I’m feeling and experiencing in the moment. It’s a big part of my life that is constantly in flux, so it’s gonna get talked about a lot.

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

 

Rhiann Johns:

Rhiann Johns

When living with a rare condition it can be really difficult to adequately explain to friends, family or even passing acquaintances the exact nature of your condition.  If it’s not something they’ve heard of, it can just lead to more and more questions so I usually describe it in as little detail as possible! Of course when asked how I am then I truthfully tell them the kind of day I’m having due to my symptoms but very often the grimace on my face, the way I hold myself and my mood tells them all they need to know. Besides, I would much rather have a discussion on the latest book I’m reading or one of the many television programmes I’m loving as frankly I think there are much more interesting things to talk about regarding my life than my illness, especially as it gets way too much attention already!

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.  

 

Farrah Kaeser:

Farrah Kaeser

I think it may just be me – my personality and education – but I find that being very direct, honest, and somewhat clinical works best for me. I don’t owe anyone an explanation about my health, but for those I care about, I want them to understand the mechanism behind my struggles, not just that I feel crummy all the time. So I usually use a balance of technical descriptors like “orthostatic intolerance”and “sacroiliac subluxation” and cute explanations like “my all-of-me hurts!” It makes my struggle clear and legitimate, but also keeps the overwhelmingly awfulness of it from being too oppressive. It seems to have been an effective strategy for me thus far.

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

 

Amber Blackburn:

Amber Blackburn

Talking to friends and family about my illness has been hard at times, and has been a learning experience for me. In the beginning I opened up too much I believe. I wasn’t really sure what living with a chronic illness looked like because it was all new to me, so I shared just about everything. By doing that it seems I scared off some people who I thought were life long friends, and they chose to walk away. Because they couldn’t deal with the things that were going on in my life. After that happened I became very closed off and didn’t share much about my health with anyone. Which wasn’t the right way to deal with it either because by not sharing some felt that I wasn’t being truthful. So over the years I have come to the realization that every person in my life is going to need something different. Some people want to know everything that is going on and others don’t need to know unless something big happens. So honestly, it depends on who I am talking to in regards to what I share.

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.

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: What Advice Would You Give The Recently Diagnosed?

If you had just one piece of advice to give at the beginning of a friend's journey post-diagnosis, what would it be?

Most conversations about health revolve around getting better as quickly as possible. We push forward through illness with the expectation of improvement. Yet for those with chronic conditions, there’s a different calculus required. The question becomes how to live well with an illness when there’s no recovery date in sight.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: What advice would you give someone recently diagnosed with a chronic condition?

Jed Finley:

Jed Finley

Do as much research as possible. You need to be the expert of your condition. Doctors are educated but unless they are a specialist in your condition, they are also working with patients with several other conditions. You theoretically need to get your Masters and your Doctorate in your condition. That said, don’t hyper focus on every symptom. For me, Ankylosing Spondylitis has an unending list of possible symptoms. Many of them, I don’t have. Be aware of them, but don’t obsess.

Be aware of your body. Keep a symptoms diary to keep track of how you feel. When I go into the doctor I want to be able to tell her exactly how I’ve felt and what I did that might have lead to that pain of lack there of. Make the most of your time. Most doctors only spend five minutes actually looking at you. Make sure all your concerns are heard, and if you aren’t satisfied, don’t let the doctor leave. He or she is working for you! Simply put, be an active patient!

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. 

Claudia Merandi:

Claudia Merandi

I was six years old when I experienced my first flare with Crohn’s Disease. As I would get older, the flares became intense. Sometimes the pain was so severe that it would take my breath away, my mouth would get dry, and I would rock back and forth until the pain would pass. This became the norm in my life. I was accustomed to pain. When my second daughter was born, my world stopped at home but it continued in a hospital bed for the next ten years. I no longer identified as being a successful court reporter, mother, and a  daughter, I only identified as being a person with a chronic illness. I remember closing off the world and living only as a sick person.

Eventually, I would rewire my brain and I became a chronically ill person living in a healthy person’s world and I learned to acclimate.  I started delivering Meals on Wheels, and then I, eventually, began to advocate for elderly. It’s imperative, as a person living with a chronic illness, to remember that their illness is a part of life but there’s many other pieces. My illness does not define the person that I am today. My illness aided in the person that I am today. Sadly, there’s no manual that comes with being a chronically ill person because it’s a lifetime challenge. It’s the club that nobody is knocking on the door to get into. But once you’re in the club, you need to learn the rules of the club. On the days that you’re sick, rest. On the days that you’re healthy, you need to embrace those days. Remember your passion, remember what makes you smile.

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.

Forester McClatchey:

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

My first item of advice to someone recently diagnosed with a chronic condition would be to find a community of fellow sufferers. Immediately. However you choose to cope with the news—self-pity, stoicism, defiance—all that can wait until you plug yourself in to a community, which can take many forms (forums, fundraising events, summer camps). There’s no substitute for speaking with people who understand what’s happening to your body and your emotional life. It organizes your experience, allays confusion/fear, and gives you a support network. So that’s my advice: find a community right away.

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

If I could give advice to someone who had recently been diagnosed with a chronic condition, I would pass along three thoughts. First, I would express the importance of a good support system. Whether that be from family or an online support group, we all need to have people to talk to who truly understand what we are dealing with.  Secondly, I would pass along that it is perfectly okay to ask for a second opinion or for a change of doctors. If you don’t feel that you are getting the care you need then by all means please ask for another option! Our health is of the utmost importance therefore we deserve only the best care. Lastly, I would stress the importance of advocacy. Not just for the condition as a whole but for yourself.  No one will ever hold your care and health to the level that we do for ourselves.

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.

Eric N. Valor:

Erin N. Valor

I would say two words: “be prepared.” For Person(s) with ALS (PALS) such as I am, it’s crucial you stay ahead of the disease by making required adjustments to your home, obtaining necessary equipment (crutches, powered wheelchairs, a wheelchair-accessible van, etc.), and other preparations BEFORE you need them. With an average survival of 2-5 years, PALS don’t have time to wait. Unlike Mick Jagger, time is not on our side.

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.

Rhiann Johns:

Rhiann Johns

There are so many things that I wish someone would have told me after being diagnosed with a neurological condition; or even during the many years when searching for an explanation to the symptoms I was experiencing. In my experience, even after gaining a diagnosis, and particularly one which is not well known I still felt incredibly alone and isolated.  So, I would advise others to seek support, whether this involves a face-to-face support group or even by finding others with the same condition online. Find your tribe, and I promise you, you will never feel alone again.

But, even when you’ve found your tribe, remember that not everyone’s experience with a neurological condition is going to be the same. These conditions are complex, and no two people experience the same set of symptoms.  So don’t compare your experiences with others in your situation – it will only drive you crazy and often will make you terrified of what your future may entail.  And don’t let other people draw comparisons for you, as they almost always have bad endings or suggest unproven treatments to try!  Work out a treatment plan that works for you, and your symptoms with your healthcare team. There will be dark days, and so I suggest to develop a sense of humour, even a dark humour – you have a fall in the street?  So, what?  Laugh it off, get back up and carry on!  Laughter helps you get through the day, especially those not too good days and makes the uncertainty a little bit more bearable.


After being diagnosed, there are certainly many more hospital appointments in the future.  So, when visiting your neurologist or other healthcare professional involved with your care, prepare!  Write a series of questions you have or concerns that have cropped since you last saw them in advance.  Also, keeping a personal health journal is something I would recommend, so you don’t forget to mention certain symptoms or other issues that you’ve encountered.  As don’t forget, you are the best reporter of your symptoms and your experience with this condition!

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.  

Amy Nicewicz

Amy Nicewicz:

If you are newly diagnosed with a chronic condition I want you to know how important it is to establish a support network. When you are having a rough day you should not need to be afraid to reach out. Fighting alone will not work. You need a stable team by your side to help you get back up when you want to give up. You have to be your own advocate sometimes. Let others know what you need in order to succeed. Communication is the key. Not everyone understands what you are going through. It can be beneficial to talk to others battling the same condition. This helps you realize you are not alone and can provide another perspective. Try your best not to let your condition stop you from doing what you love. Let your illness empower you. Fight back!

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. 

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.

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.

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.