Illness Advocate Touches My Heart

  • b04 Illness Advocate Touches My Heart

kelly fricke Illness Advocate Touches My HeartLisa shares about a new illness advocate that you should know about

Awhile back I was browsing some of the videos on YouTube for those who live with chronic illness and this young woman, Kelly Fricke stood out. I started watching a video and got hooked. She spoke from the heart, was very warm–and real. Some videos she has on her perfect make up and “looks fine” but her words share just how much she knows about living with an invisible illness. Other videos, I teared up with her as she described her pain, wondering if she should head for the hospital.

This last month I am honored to have connected with Kelly and she will be our featured guest for our chat session today for Invisible Illness Awareness Week. She made a special video in honor of the week too that I am sure you can relate to.

I asked Kelly to share a little bit about herself.

She is 23 and has been sick for 10 years, a lot of the time being spent on trying to figure out what she had exactly. She says, “I’ve been quite a mystery with doctors, but I have been diagnosed with Inflammatory Bowel Disease (Crohn’s), Rheumatoid Arthritis, Gastritis, and suspected Endometriosis.”

How did she got started with the videos and how it has made a difference?

“I made my first video 2 years ago (in October!) and after that I just got hooked! I started blogging and reaching out every since! I do videos, posts, writing, to be the voice for those struggling with chronic illnesses. I originally started all this to help myself, but then soon realized that so many people were struggling and didn’t have the voice to stand up and say what they were feeling.

I remember being so scared in my room and not having anyone to talk to about the way I was feeling, and I don’t want anyone to ever feel like that. I want people to know that they are loved and that there is always hope. Doing all that I have done has helped me cope so much.”

I felt like I had no purpose when I lost so much in my life, but then I felt blessed because I realized that maybe this was my purpose after all. God uses our suffering to propel us to a new direction of victory! When something goes wrong, sometimes I smile and look up, because I know God is up to something!

So far, Kelly spends most of her online time on Facebook and Youtube reaching out to people. I asked her what people will find there.

“I hope that they can find comfort in knowing they aren’t alone, and always leave feeling renewed of hope and strength to get through another day,” she says. “I want them to understand that just because they are ill, doesn’t mean that they are worth any less than anyone else; If anything, they are more special, beautiful and deserving!

When I asked her why encouragement is so important when we are ill she replied, “I think it’s so easy to slip into depression, because you lose so much identity and self worth when things start to fall apart. If you are encouraged through your struggles, you tend to see the light of hope and have a different perspective about your suffering and pain.”

“Encouragement is such a key role in getting through the day with a chronic illness,” says Kelly. “Encouragement gives you that little push to keep going, even when you have no idea what the next step in your journey will be.”

I hope you will be blessed by Kelly’s video–and her heart–as I have been.

lisa signature1 Illness Advocate Touches My Heart

  • b04 Illness Advocate Touches My Heart

Friday Chat: When identity, jobs and more get lost

September 12, 2013 by  
Filed under Seminars, What's New, What's New, How to Help

  • b04 Friday Chat: When identity, jobs and more get lost

chat friday pinterest Friday Chat: When identity, jobs and more get lost

We had our last chat, Friday at 10 AM PST/1 PM EST (USA) at our Facebook page for Invisible Illness Awareness Week, with special guest, Kelly Fricke. Many of you know her from her videos online and encouragement on Facebook.it really was a great conversation, chatting about our loss of identity when we may not be able to do what we dreamed of, perhaps we are working but it’s not a job we can keep much longer.

Here are the links to the specific questions and answers. You can read them anytime and still comment.

work Friday Chat: When identity, jobs and more get lostCan you believe it is already Friday of Invisible Illness Awareness Week? … If you would like to comment below, please tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness. —> Read more here

One of the hardest losses we have when we have a chronic illness is our loss of identity. This often includes some kind of work, whether it is one where we get a paycheck or just the idea of making a difference. How has your work/volunteering/accomplishments changed since you have had an illness?  —> Read more here

Many of us wish we could do what we love and the money would follow. It doesn’t always work that way. How have you found ways to make a living desire your limitations? Feel free to share links in your comments for a gig you have, an Etsy shop, etc. —> Read more here

Sometimes our illness is a full time job, other times we have seasons when we can do something more. How have you learned to balance taking care of yourself with other activities?  —> Read more here

Whether you work or not, in whatever capacity, how do you find purpose with your illness? What is it that gets you out of bed on days you don’t feel like it? —> Read more here

If someone with an illness came to you, asking how she could make a living me find her purpose, despite struggling with daily pain, what advice would you tell him or her?  —> Read more here

Kelly stays to answer questions —> Read more here

We had a GREAT video workshop last year with Tiffany Westrich about finding our identity when ill. If this is an area you would like to understand better and walk through the process of who you were “before illness” and now “after illness” this is an awesome resource. Bookmark it to watch later!

And this closes our official chats for Invisible illness Awareness Week. Thank you sooo-o-o much for participating this week. You can return here anytime and write additional comments or read comments. You can also do a search in Facebook for #invisibleillnesschat for all of our chats this week. We will also link to this at our website, invisibleillnessweek.com . Be sure to visit Kelly’s web page too at Facebook.com/FindingStrengthThroughPain —> Read more here

lisa signature1 Friday Chat: When identity, jobs and more get lost

  • b04 Friday Chat: When identity, jobs and more get lost

I am Too Young for This Waiting Room

  • b04 I am Too Young for This Waiting Room

too young2 I am Too Young for This Waiting Room

Most of us expect to face illness in our lifetime, but too often it arrives when we are way too young for the pain and the places it takes us.

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” Bill Cosby

On Thursday, as I sat in the waiting room of my cardiologist’s office, I realized that I don’t know if I’m in a doctor’s office or at the Huxtable residence.

Flower printed Victorian style chairs in burgundy, beige and stale green line the pale yellow walls. Pictures of an empty café in Paris or Prague hang idly on the walls and brochures for better health tempt you with promises to a cure a disease you don’t even have. . . yet. Wilted silk flowers haphazardly placed in rusted iron vases attempt to spruce up the joint and a shiny coffee table covered in dated magazines serves as the distraction to the awkwardly quiet environment everyone here is trying to escape from.

All of it so simple–yet so overwhelming–for the newcomer or the regular. No matter how often you sit and wait in the room, you are not here because Bill Cosby wants to share his pudding pop with you and give you parenting advice. This is definitely not the Cosby show.

As I look around, I am clearly
the youngest person in the room

Aside from the bubbly but incompetent receptionist at the counter –who looks maybe about 19 on a bad day–everyone, including the African American lady who can’t see the forms she’s filling out–has a few grey strands Of hair.

Two ladies are asleep, heads nodding forward, but still able to clutch their purses for comfort. I scan the room some more and see a sea of loose skin, age spots, double saggy chins and necks and wonder what they think of me.

There are three men who are sitting, legs crossed, reading magazines. They sit the way I imagine they do every morning they wake up to another day of retirement or disability: upright and determined not to die. Only at home they read with a cup of coffee at their side and not the nagging sensation of impending doom.

I realize that everyone that enters and exits the room limps, hobbles, coughs, spatters, stutters or needs help.

too young 3 I am Too Young for This Waiting RoomEveryone but me.

I am young. I am limber. And despite my 5-night stay in the ICU 40 days ago, I still feel like I can conquer the world. Now, if only they knew how many meds it takes for me to feel this way.

You see, truthfully, I am jealous of the long lives they have already lived. I am envious of the fact that it’s taken them this long to get to the point I’m already at. I know that whether or not this is their first visit or their 100th, society’s standards of what is “normal” is that . . .

I.

Shouldn’t.

Be.

Here.

. . . for at least another 30 years. I don’t belong here.

The guy from across the room looks up from is iPad momentarily and makes eye contact with me. I know what he’s thinking. I know because he does a double-take when he notices my wrinkle-free face and full of head of hair. His eyes look alarmed and curious for just one moment and then he quickly returns to his distraction so that I can’t read his thoughts.

I catch him looking at me again as I write and I know he is completely confused. He is trying to make sense of why I’m there. Waiting on an older relative? Selling pharmaceuticals? Did I get lost on the way to the OBGYN? He pretends to scan the room but spends too much time sizing me up. I smile at him and keep writing.

I know that his thoughts and assumptions won’t matter two hours from now when I finally have my echo results or when I go home tonight and have to pop 5 more pills just to prevent the side effects of the 8 I took this morning.

What matters now is that –this

this waiting room, these looks, the pills, the pain, the endless doctor’s visits, blood work and cancer causing procedures . . . are my normal.

And I know that even though I shouldn’t be sitting here for another 3 decades that I am. I know Bill Cosby isn’t going to walk through the door of the waiting room and cure me with a bowl of Jell-O and a laugh. And all of that precious knowledge is what makes the fake flowers and the gaudy green lounge chairs seem all the more ominous.

Ominous because my sitting here is not a choice, it is a necessity that is now my norm.

Yet behind the looming what ifs? and how comes? and why nots? I will choose to find laughter and joy.

I will choose to love. I will choose to put on an old sweater, cock my head to the side and in my best and most horrific Bill Cosby voice, offer you a pudding pop and a smile in exchange for one moment of peace and the hope of survival.

jasmine I am Too Young for This Waiting RoomJasminne Mendez is a performance poet, actress, teacher and published writer. She captivates audiences through the passion and energy of her words and voice. Her work covers topics ranging from living with scleroderma and other auto-immune diseases to what it was like growing up Afro-Latina in America. Mendez has been published both nationally and internationally and her first multi-genre memoir My Family, the Island & Me will be released by Floricanto Press later this year. Visit her web site here.

photo credit for coffee cup: Dewayne Neeley via photopin cc

  • b04 I am Too Young for This Waiting Room

Thurs Chat: Being an advocate for awareness for any disease

September 11, 2013 by  
Filed under Seminars, What's New, What's New, How to Help

  • b04 Thurs Chat: Being an advocate for awareness for any disease

chat thursday pinterest Thurs Chat: Being an advocate for awareness for any disease

We’re talked about advocacy on Thursday at 11 AM PST/2 PM EST (USA) at our Invisible Illness Awareness Week Facebook Page. Whether you have an illness-related blog to just posting about invisible illness stuff on Facebook occasionally, chances are you are an advocate.

We were joined by special guest, Tiffany Westrich. She is the CEO and Co-Founder of the International Foundation for Autoimmune Arthritis (formerly known as the International Autoimmune Arthritis Movement) and Event Coordinator and Host of World Autoimmune Arthritis Day.

Below are links to the questions we chatted about and the responses. You can still click on any link and find the conversation and Facebook and comment.

healthadvocate Thurs Chat: Being an advocate for awareness for any diseaseHello, friends! I am so glad you are here to participate in today’s chat. We’re excited to have Tiffany Westrich with us and she is an advocate! She is the CEO and Co-Founder of the International Foundation for Autoimmune Arthritis (formerly known as the International Autoimmune Arthritis Movement) and Event Coordinator and Host of World Autoimmune Arthritis Day. —> Read more here

We will be chatting about how we are advocates and if we feel we make a difference.  Tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness. —> Read more here

If you are participating in today’s chat, you are taking your first step in being an advocate just for showing up. Being an advocate means to publicly support a cause. So there are varying degrees of advocating. How do you advocate for something illness-related and share what health-related topic it is? (blogs, social media, writing, videos, etc.) —> Read more here

The Internet gives the opportunity for us all to be advocates, even when we don’t feel well. When I began my organization it was 1996 and one of the few ways to advocate was in your own website or a newsgroup. Have YOU become more of an advocate than 5 years ago? How has it made you feel? Tiffany, maybe you can start us off because you have done a lot of advocating! —> Read more here

Some people are advocates in a more inspirational way, supporting those with a health condition, through writings and videos. What kind if advocate do you typically respond to? Those with clear causes and steps to make a difference, or those who inspire you to make changes in your own life–so you can inspire others? —> Read more here

Being an advocate for our own health–making sure we are assertive for our own treatment–can be exhausting. How would you encourage other people who have an illness to continue advocating when they are ready to collapse and let someone else decide things for them? What tricks or tools do you use to advocate for yourself? Tiffany, do you have some tips? —> Read more here

How does it feel to be an advocate for a health cause? Tiffany is an advocate for specific illnesses. When you are able to encourage others who are fighting the same battles, does it help you focus on how to spend your time and energy? Do you see your advocacy as something fun to do, something necessary, or a part of your calling and purpose for having this disease? —> Read more here

Is there a question you would like to ask Tiffany? She will be here a few more minutes if you would like to find out how she went from being a patient to an advocate for patients. —> Read more here

Thank you for participating in today’s chat about advocacy and we appreciate Tiffany joining us today! —> Read more here

 

lisa signature1 Thurs Chat: Being an advocate for awareness for any disease

  • b04 Thurs Chat: Being an advocate for awareness for any disease

Creativity and Chronic Illness, Why I Create

September 11, 2013 by  
Filed under Guest Bloggers & Articles, What's New

  • b04 Creativity and Chronic Illness, Why I Create

creativity2 Creativity and Chronic Illness, Why I Create

The question we ask this year at Invisible Illness Awareness Week is ‘what do you choose?’

 

Patti shares why she chooses to create.

I don’t always consider my autoimmune arthritis a benefit, particularly when one day–or five days–have been cancelled due to lack of ability. But there are gifts that come with the burden that are too valuable to bury beneath self-pity.

patti art1 264x400 Creativity and Chronic Illness, Why I CreateI’ve learned so much about understanding the need for . . .

. . real priorities

. . . . valid choices

. . . . . . insightful empathy

. . . . . . . . living in the moment

and the need to abandon the false ego that really does waste a lot of time.

I’ve lived the better part of the last decade with illness and I choose to call myself an “altered artist.” Though I’ve been a writer and photographer nearly all my life, I never picked up a paint brush until the expanding need for self-expression gave me an ultimatum: either work to nurture an evolving, explosive passion or, well . . . go nuts.

I say that lightly knowing how fortunate I am to have had that opportunity.

Saturday I was on day-four of a major flare and as the anger swelled, and the bitter, mean, self-taunting voices began shouting, I grabbed my headphones, paint, and my watercolor book and dove in (gently).

I persevere.

Not because it’s my career (I’ve already done that, though I’m far too young to be retired) or because I have big plans–which invariably derail midstream.

No, aside from a few random events, the only people who see my art are you, my family, and close friends. But I don’t create for the sake of potential sales, exhibition, or publication.

I choose to make art because I can and because it helps me stay in touch with the gentle encouraging voice that is always there, whispering, “you make a difference, you have a purpose.”

Patti Edmon Creativity and Chronic Illness, Why I CreatePatti Edmon, a lifelong writer, began creating mixed-media art after chronic illness yanked the rug from beneath her feet. Over the years she has learned to make the most of life and, despite the many obstacles faced by those with chronic (invisible) illness, she has learned to love the new self she has become and appreciate the invaluable lessons. Visit her website
http://pattiedmon.blogspot.com

 

 

 

 

photo credit for scissors: Ivana Vasilj via photopin cc

  • b04 Creativity and Chronic Illness, Why I Create

2 Women With Invisible Illness Week Online Events

September 10, 2013 by  
Filed under Articles, What's New, What's New, How to Help

  • b04 2 Women With Invisible Illness Week Online Events

We have some people who have helped spread the word on our Invisible Illness Awareness Week event with their own spin on it.

Make a video about your choices

jenniprokopy 2 Women With Invisible Illness Week Online EventsJenni over at ChronicBabe has created a video of “I choose to… ” that you can watch and if you make your own video you may just win a prize from her! Yep, she is giving away some very cool goodies. Find out more at her web site here. 

(Our contest is for photos only, one cannot upload a video, but you can load your video to Facebook, Youtube, or another service and let us know where it is. We’d love to see it!)

Jenni has made her own video of her choices below.

 

Take a photo your hand. . . and hope!

hopehands 2 Women With Invisible Illness Week Online EventsKes Elliot is a young woman who is a chronically ill artist and has started a project called Hope Hands for a Cause to spread the word about Invisible Illness Awareness Week. She has late stage chronic lyme disease and this is the second year of her project.

The concept calls upon participants to create artistic images of hands displaying within their image a message of hope.

Kes explains that she wants to help raise awareness for the chronically ill and make the “invisible” more visible. “The more illnesses are seen, recognized, and talked about, the more people become familiar and learn to understand,” she says.” Each entry symbolizes your support for all the brave warriors fighting silent battles.”

If you are interested in participating it’s easy:

  • Create an artistic hand, edit and include within it a message of HOPE. You can use photos, quotes, editing apps, whatever you like
  • Be bold and get creative
  • Post your images to Instagram, Eye-em, Facebook, Pinterest, Twitter or other social media networks including the hashtag #HopeHandsForACause
  • Explain a bit about the project and extend an invite to all
  • If possible, tag at least three friends to join!

“Every time a new entry rolls in I get excited,” says Kes. We love that her project focuses on hope! You can view photos in a variety of places Pinterest | Facebook | Instagram

She shares the quote by George Iles, “Hope is faith holding out its hand in the dark.”

See photos and find more information at her Facebook page, CFS Warrior Art.

  • b04 2 Women With Invisible Illness Week Online Events

When a Friend is Ill, The Right Words Are a Blessing

  • b04 When a Friend is Ill, The Right Words Are a Blessing

friend is ill When a Friend is Ill, The Right Words Are a Blessing

A friend who is ill might need different words than you expect.

When your friend is coping with a chronic illness, it’s easy to try to reach out and make him or her feel better with quick encouragement such as “just fight it, don’t give in, you’re stronger than this disease, don’t let the illness win.”

For those who live with an invisible illness, however, these words can be less than comforting. Consider for a moment that living with the emotional adjustment of illness can be as difficult as the physical changes. It’s in the midst of trying to pace one’s self through the fatigue, pain, and loss of physical freedom–while still juggling the chaos of life–that the advice starts arriving.

And it can be heartbreaking.

Because regardless of the care and concern that may be behind the words, they are heard differently. Carla Yount, who lives with endometriosis and interstitial cystitis explains, “I just need for someone to realize and validate that I am pushing as hard as I can.” Rather than validating one’s pain and effort, the cliche comments like, “My sister’s friend’s neighbor had that and he tried some vitamin water and he’s fine now,” end up sounding more condescending than concerned.

When people offer advice on treatment options, it can be hard for those of us who are ill to be receptive. Usually those treatment tips we are told we should try, we have tried or already spoken to our doctors about. If there is a commercial about it on TV or the ad is in magazines, we’ve likely known about it for years.

Erin Burris who lives with Multiple Hereditary Exostoses (MHE) says, “It makes me feel like I’m stupid. Do they think I haven’t looked everywhere for treatment options? It also makes me feel like I’m not trying hard enough to get better.”

Generally, our society believes that chronic illness is something that happens to older adults. “It frustrates me when people speak down to me because of my age,” shares Brittany Washburn who lives with Reflex Sympathetic Dystrophy. It’s not uncommon for young adults (anyone under 50) to hear “You are too young to have that!”

“I am not incompetent,” says Brittany. “And I get hurt and upset when people compare me to others, especially to something completely different from what I have and live with every day,” referring to how we quickly lump illnesses together that sound the same.

And although fresh air may be good for most people, a little vitamin D is not a cure. Being told to just get out of the house or find something to take one’s mind off of the pain usually backfires.

Laura Seil Ruszczyk, who lives With dysautonomia responds, “It is not that easy to just get out of the house or stay busy. Some days I can’t get off the couch, let alone get anywhere else, so for someone to tell me to stay busy and things will be fine is very annoying. I need to pace myself as energy is at a premium and once it is gone it will not come back for awhile.”

Invisible Illness Awareness Week is coming up in September and part of their purpose is to validate those with chronic illness as well as educate healthy friends on what words hurt and what words help. The following video shares some of the comments people give to those with illness that can sting or even cause the tears to fall moments after walking away.

Although many of these remarks may seem harmless or even encouraging to the one disbursing them, those who live with illness have heard them many times and they only bring up negative feelings that should be avoided.

“I feel very annoyed, frustrated, and sometimes angry,” explains Stephanie Emory, who lives with dermatomyositis. “I just need someone to genuinely care and listen–not a lecture on something they know nothing about, or information that I already know and have tried. I think what bothers me most is some people are so condensing about it.”

So how can you encourage a friend?

There are a wide variety of ways people can encourage those who are coping with a chronic illness. Consider times in your own life when you have coped with grief, loss, or trauma and the kind of comfort you desired. Odds are if someone handed you a book about coping you were more likely to throw it at the person than read it.

“I believe you. We know this is real and you are not imagining it,” are precious words to Kathleen Keith Eakins. She was blessed to have family members who said this to her when the doctors told her that her disease was all in her head.

Megan Fulsom, who lives with dysautonomia and fibromyalgia among other illnesses, shares words she appreciates. “That I am strong and persevere. So much of the time I feel so weak–and know that physically I am–but I like to hear that I am emotionally strong and an overcomer. I always want to be recognized as a person that doesn’t give up and who faces chronic illness head on and with hope.”

Other kind words include, “Can I pick something up for you at the store? Could I borrow your kids for a play date while you rest? Would you like company while you wait for your test results? I can bring you dinner tomorrow! Chicken or lasagna? It’s okay if you want to just sit and cry. I am not going anywhere.”

When in doubt, just listen. And if you need to say something to a friend who is hurting, simply say, “I don’t know what to say, but I am here and I care.”

Invisible Illness Awareness Week is September 9-15, 2013. You can find more information at http://invisibleillnessweek.com

lisaaug13 93x100 When a Friend is Ill, The Right Words Are a BlessingLisa Copen is an author and speaker, encouraging those who live with chronic illness through her ministry and outreach as an advocate. She is the author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend among other books. Lisa has lived with rheumatoid arthritis and fibromyalgia for twenty years, since 1993, and resides in San Diego with her husband and son.

  • b04 When a Friend is Ill, The Right Words Are a Blessing

Having a VISIBLE Invisible Illness (You read that right)

  • b04 Having a VISIBLE Invisible Illness (You read that right)

visible invisible Having a VISIBLE Invisible Illness (You read that right)

Would you rather have a visible-or invisible–illness? Megan explains why this simple question can be difficult to answer.

By Megan Fulsom

Oftentimes, when people find out that I’m chronically ill I get asked the question “Would I rather have a visible or invisible disability?”

It’s such a hard question because there are “advantages” and “disadvantages” of each. Plus, I’ve never been on both sides of the coin before. How was I supposed to know if I would prefer having a visible disability if I didn’t know what it was like?

Well, now I kind of know. I have what I’m calling a visible invisible disability. How can I have a visible invisible disability, you may ask? Easy. Sometimes my illness is visible and sometimes it’s not.

I have several different chronic illnesses and until about three weeks ago they were all invisible–until I was passed out on the floor. Thanks, dysautonomia.

Invisible illness rarely show our struggles

It’s always been so frustrating to explain to people how I could look like a perfectly healthy 20-something female and yet be so sick at the same time. On the outside I’m the picture of health. On the inside my body is at war with itself 24/7 and no one can see that part, or understand it, but me.

And then they could . . .

Things started becoming more visible in my invisible illness world

I started using a wheelchair recently, especially when I’m at school, to help with the extra weight of my book bag which prevents me from passing out as much. I can no longer stand for more than ten minutes–and that’s on a really good day. I also the wheelchair it to counteract the pain from my fibromyalgia and EDS.

Let me tell ya what though, having a visible illness is very different than having an invisible illness. You are more noticeable. People start offering to do things for you that you can do yourself even in your wheelchair, but they feel sorry for you.

What does a visible invisible illness feel like?

How does it feel to be someone with a visible invisible illness? Weird, that’s how.

I use my wheelchair to get into school and class because I have my book bag. Then I walk to the bathroom. I see the same people both times and so I need to explain that I just need to use it for certain things because I have a condition that causes me to pass out sometimes.

And they just stare.

. . . And it’s awkward.

. . . . . . So I turn around and scurry back to class.

And then there is the parking spot.

I feel like I have to explain why some days I do not have to use a handicap parking space and some days I do. Some days my pain is less and some days it’s pretty high, but you can’t see it either way.

Lately, my tiredness and fatigue is showing up on my face. I have had multiple people tell me the past two weeks that I look tired. While part of me is excited that I’m finally starting to look as sick as I feel, I’m not excited that so many people are noticing the part that does not flatter me.

Every day is different

Anyway you cut it, having any type of illness visible or invisible is a journey every day. Either provides perspective for being grateful for the small things.

But I think that being able to live in the realm of having a visible invisible illness gives you the best perspective. You know both sides of the story, how to accept anyone for themselves their uniqueness.

Therefore, having a visible invisible illness seems like an amazing thing to me, so if that’s you, embrace yourself, because you are awesome!

megan Having a VISIBLE Invisible Illness (You read that right)Megan Fulsom has Dysautonomia, Fibromyalgia, EDS, Celiac, Colitis, PCOS, Endometriosis, and Thoracic Outlet Syndrome. But she is not her illness. Megan is a 20-something woman who loves God, music, the outdoors, the Carolina Tarheels, and food.

She has a Border Collie named Carolina and a cat named Cadence –both of whom she loves to cuddle with on her days in bed. She is a graduate dietetics student and will hopefully be graduating in August. Upon graduation she hopes to pursue working with those with chronic illnesses, helping them to manage their illness with their nutrition.

Megan plays bassoon in her free time to relax. She also plans to run/walk a half marathon in September 2014 to prove she can. Visit her website at http://medicalmusingsbymeg.blogspot.com

photo credit: pni via photopin cc

  • b04 Having a VISIBLE Invisible Illness (You read that right)

Tuesday Chat: How illness affects our relationships

September 9, 2013 by  
Filed under Seminars, What's New, What's New, How to Help

  • b04 Tuesday Chat: How illness affects our relationships

chat tuesday pinterest Tuesday Chat: How illness affects our relationships

We chatted about relationships on Tuesday, joined by Jenni Saake who is an author, speaker, mom to three kids, and she lives with multiple chronic illnesses. A couple of years ago she had severe strokes and is now a stroke survivor who continues to share her experience through her blogs (health conditions | stroke) and books.

goodconversation3 Tuesday Chat: How illness affects our relationshipsGreeting and meeting others: Hello! I am so glad you are here. We are excited to have Jenni Saake with us. Jenni is an author, speaker, ministry leader, mom of three, and a stroke survivor and I know she will add a lot to our chat as we talk about RELATIONSHIPS! I (Lisa) will be posting a question and then you can comment or reply to others comments. We will be talking about relationships today and how they relate to our illness. —> Read more here

Yesterday we spoke about how “invisible illness” is referring to a lack of visual symptoms. When others cannot see what they believe is pain –or signs of illness–it is natural for them to doubt the severity of our illness. How has living with an INVISIBLE illness affected your relationships?   —> Read more here

Have you ever had someone doubt that you were really ill at all or that your illness was as debilitating as you made it sound to be? Did you confront this person? Or try to explain? Or did you just go home and cry?   —> Read more here

How do you feel your family–a spouse children, adult children, or your own parents--understand (or don’t understand) your illness and how it affects your daily life?  —> Read more here

If you found a way to explain your illness, or help someone better understand it, please share it below (for example, a deep conversation, a book they read, attending a support group or a doctor’s appointment with you, seeing a scar from a procedure, having their illness experience) —> Read more here

Sometimes our illness is hard to see and then it becomes more visible. How was it different when people could see the illness/disability?  —> Read more here

If you could have a conversation with a loved one or friend about what your life is really like, and you knew they would respond positively, what kinds if things would you say? —> Read more here

Thank you so much for pouring out your heart, friends. I know it can be hard to talk about hurt feelings and those who have doubted your illness. Know that sharing about it in this community will encourage others. Remember, you can return anytime and write additional comments or read others comments. You can also do a search in Facebook for #invisibleillnesschat all of our chats this week. We will also link to this at our website. Be sure to visit Jenni’s page at http://GivenMeAThorn.blogspot.com or http://StrokeOfGrace.blogspot.com . May you have a blessed day. —> Read more here

To see ALL CHATS of the entire week, you can use hashtag #invisibleillnesschat or just click here.

Thank you for making this chat a great opportunity to learn more about invisible illness, how we identify with it and a chance for us to encourage each other. Take a moment to share this page with someone else. You can pin it, share it on Facebook or your support group. You never know who is suffering silently and feeling invisible. Thanks,

 

lisa signature1 Tuesday Chat: How illness affects our relationships

  • b04 Tuesday Chat: How illness affects our relationships

Monday Chat: Why does it matter if the illness is INVISIBLE?

September 8, 2013 by  
Filed under Seminars, What's New, What's New, How to Help

  • b04 Monday Chat: Why does it matter if the illness is INVISIBLE?

chat monday announce post Monday Chat: Why does it matter if the illness is INVISIBLE?

Does it matter if the illness is invisible or not? Why?

We chatted about invisible illness on Monday, September 9 at 11 AM PST/2 PM EST (USA). Christine of ButYouDontLookSick.com joined us!

Below you will find links to the specific questions and answers. You can still add your comment if you like or respond to the comments of others.

friends1 Monday Chat: Why does it matter if the illness is INVISIBLE?Welcome, everyone. Thank you for joining us. This is Lisa behind the scenes along with Christine Miserandino of the Spoon Theory. I will be posting a question and then you will comment and reply to others about it. We will be talking about the idea of “invisible illness” today. —>Read more here

Getting to know you…
If you would like to comment below, please tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness, or… your favorite color, your favorite shoes, whatever! We want this to be fun!  —>Read more here

While a chronic illness is more about the length of time an illness exists, “invisible illness” is more about how you relate to other people and they relate to you since you look healthy. How does using the term “invisible illness” validate how you feel about your illness? Christine, you have done this from the beginning with your outreach. Can you comment on this? —> Read more here

Have you ever explained to loved ones how you have an invisible illness or hidden disabilities? Did it help them understand the impact of your struggles at all–or not? I know Christine’s Spoon Theory has helped many people explain.  —> Read more here

When you identify with having an invisible illness, does it help you feel more validated–or does it create more bitterness–an “us” versus “them” mentality? How can we prevent our disappointment in people making us resentful?  —>Read more here

When you share invisible illness memes or images or sayings online among your healthy friends, do you think it makes a little bit of a difference? Do they gradually come to understand there is more to how you are feeling than just how you appear? —>Read more here

As part of the invisible illness community, do you feel having these “friendships” helps how well you cope with your disease? Does having a group of people who “look fine but feel awful” make you feel more understood or is it too generalized and you find more comfort from those with the same illness? —>Read more here

Thank you everyone for joining us today, especially our guest, Christine! You can return here anytime and comment some more or read others comments. You can also do a search in Facebook for #invisibleillnesschat all of our chats this week.  —>Read more here

Christine has been having some computer problems but she will be here for the next hour. Do you have a question for her, the special woman who came up with The Spoon Theory? Feel free to post here below and she will answer you personally! (thanks, Christine!) —> Read more here

 

To see ALL CHATS of the entire week, you can use hashtag #invisibleillnesschat or just click here.

Thank you for making this chat a great opportunity to learn more about invisible illness, how we identify with it and a chance for us to encourage each other. Take a moment to share this page with someone else. You can pin it, share it on Facebook or your support group. You never know who is suffering silently and feeling invisible. Thanks,

lisa signature1 Monday Chat: Why does it matter if the illness is INVISIBLE?

  • b04 Monday Chat: Why does it matter if the illness is INVISIBLE?

Next Page »

© 2013-2014 Invisible Illness Awareness Week All Rights Reserved -- Copyright notice by Blog Copyright

>Link up your own blog post to our link party at Invisible Illness Awareness Week - >Submit
AWSOM Powered