Below is list of illness related articles by our guest bloggers here at Invisible Illness Week. What is on your mind today? Are you looking to find some inspiration or motivation? Or maybe a friend or co-worker said something that really hurt and you need to not feel so alone for awhile.
In our list of illness articles there are all kinds of topics from people of all ages, with all kinds of illnesses. Chances are one of our guest bloggers have addressed a mixed emotion you may be experiencing about living with an invisible chronic illness.
Will you do us a favor and share this page somewhere like Facebook or Pinterest or with an online support group? We’d love to reach more people so they know they are not alone.
- Guest Bloggers & Articles
- Illness Advocate Touches My Heart
- I am Too Young for This Waiting Room
- Creativity and Chronic Illness, Why I Create
- Having a VISIBLE Invisible Illness (You read that right)
- Do You Really Want to Know How I am Feeling?
- Invisible Illness: How Do You DO IT?
- How My Invisible Illness Has Changed Everything
- What Happens When You Stop Listening to the Advice?
- Should We Tell Healthy People Our Illness is Like When They Get Sick?
- The Invisible Me
- II Week Founder Answers Meme Questions, 30 Things...
- What I Learned About The Variety of Illnesses During #iiwk12
- 3 Challenges of Being an Illness Advocate
- Feeling "Naked" In a Crowd Due To My Invisible Illness
- It Is Hard to Explain Illness To Friends
- Let's Choose Friendships Over Fragrances
- Living with Invisible Illnesses -- Including Mental Illness
- My Hope For You, Those With Illness
- Chronic Illness: It Affects The Whole Family
- I Am Not a Slob, I have an Invisible Illness
- Is An Ill Friend Spiritual? Say, "Tell Me About God."
- Don’t Isolate Yourself in the Swamp
- The Invisible Anchor: The Coming of Age Story of a Young Girl With an Invisible Illness
- When is Enough, Enough?
- Remission: How to Find Purpose While You Wait For It
- The Invisible Illness of Myeloproliferative Neoplasm
- How Absorbing Our Environment Will Help Us Grow
- Neurocardiogenic Syncope, The Invisible Illness That Changed My Plans
- Invisible Illnesses: What Do They Look Like?
- How to Get Some Sleep When the Pain Won't Go Away!
- What it is like to have an Adult Child with Fibromyalgia
- Labels of Love
- Shedding Light on Invisible Chronic Illness
- Rebuilding After Illness
- Video: Trying to Explain Your Illness to Well-Intentioned Friends
- "You Look So Good!" To Wear Make Up or Not?
- Why Are We Expected to Be Brave in the Face of Illness?
- Seeing Beauty Through Our Pain
- Am I Too Invisible For Accessible Seating?
- Healing Words
- What Does it Mean to Accept Your Chronic Illness Diagnosis
- 5 Ways to Cope in a Crisis When Living With a Chronic Illness
- The Little Things We Take for Granted
- The World Keeps Going And So Should You
- Does Michaele Salahi's admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?
- How to Decide Your Career Future When Chronically Ill
- The Invisible Woman
- My Illness No Longer Controls Me
- The Invisible Symptoms of Multiple Sclerosis
- How Do You Start Becoming a "Well" Ill Person?
- Discovering A New Normal
- Finding My Voice -- To Sing Despite Chronic Illness & Pain
- "Bring On The Rain" Video is Comforting
- Savoring the Privilege of Walking
- “You’re not alone. I have a pebble, too.” The Invisible Illness Experience
- This is Where The "Healing" Begins
- Chronically Connected - How The Chronically Ill Form Relationships Online
- Can You Still Be Friends If They Think You Are Faking Your Illness?
- To Move Or Not to Move - A Dramatic Day of Living with Rheumatoid Arthritis
- Should I Feel Guilty When I Have a Good Day?
- "What do you do?" Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)
- Mental Illness - The Invisible Illness We Don't Talk About As Easily
- Have You Ever Considered Sometimes it is The Caregiver Who is Invisible?
- Creating Pain Awareness Through Photography
- You are Too Young to Be That Sick! Chronic Illness & Young Adults
- Talking To Your Spouse About Your Illness: How Much is Too Much?
- The Battle with The Mirror When Living with an Invisible Illness Even I Cannot "See"
- "I Just Want To Help!" When People Comment On Your Illness
- Multiple Chemical Sensitivity Can Be Considered an Invisible Illness
- People With Invisible Illnesses - Look Out! We Are Everywhere
- Exercising and Acknowledging Your Limitations When Living with Daily Chronic Pain
- Your New Chronic Illness Small Group: Who Is Invited?
- How To Really Help Me When I Ask For Your Help
- How to Cope With Unsolicited Advice When You Have an Invisible Chronic Illness
- Rainbow of Hope Sticky Notes Encourage People
- When Co-Workers are Chronically Ill Or Have Cancer: How To Support Them
- When Illness Hits a Young Married Couple
- Living With Invisible Illness: 5 Ways To Get Over Aggravations
- 10 Things I've Learned From Chronic Illness
- Why Do We Pit One Illness Against Another? We're All In This Together
- What Exactly Is A Chronic Illness And Who Defines It?
- Those with Invisible Illness Are A Hidden Minority Group - Among Us But Invisible
- Is Autism an Invisible Illness?
- Living with DAILY Frustration of Chronic Illness
- Even a Good Cry Can Lead to Hope
- Invisible Illness: Type 1 Diabetes
- Laurie Edwards Reflects on Invisible Illness
- How to Give an Ill Friend Love, Understanding, and Support
- Job Interviews and Illness Disclosure
- How to Be a Fabulous Friend to Those with Illness
- Reevaluate Your Methods of Getting What You Want
- What Others See Isn't Our Reality
- The "What, the "How" and the "Then What" of it All
- Is Dementia an Invisible Illness?
- Dancing Backwards in High Heels
- When Your Children Are Ill Too
- Self Consciousness and Other Thieves Of Peace
- Poem "Too Young"
- What I Know Now...
- When Abnormal Becomes The New Normal
- Dear World: An Explanation of the Illnesses I Cope with Daily
- Life is Hard, but I am Still Blessed
- Healing Post-Traumatic Stress Disorder: 5 Tips for Empowering Your Recovery
- On Listening and Judging
- The Importance of a Good Support System
- The Hardest Part is that People Just Forget Our Illness
- Will You Receive Disability Benefits If You have an "Open and Shut" Case?
- 10 Ways to Make Your Invisible Illness Visible
- From Invisible to Invincible: How to Take Back Control of Your Health and Live Well with an Autoimmune Condition
- Coping With Crisis on Top of Chronic, Part 1
- 10 Tips for Starting a Business While Living with a Chronic Illness
- Can You Job Hunt, Live with Illness and Stay Motivated
- Tips for When Your Spouse is Chronically Ill
- Making Your Pain Doctor A Partner
- You Don’t Look Sick - Poem
- Why I Rode Space Mountain and Celebrated Irresponsibility
- The Cave of Denial: A Place to Hide
- From Police Officer to Patient... to Ironman
- In Sickness and in Health...or Just in Sickness?
- Being a Teenager with a Chronic Illness
- How Illness Was Both My Loss & My Salvation
- Today You Walked Past Me...
- Let's Take a Vacation
- A Letter to My Donor Family
- When Police Don't See Your Invisible Condition
- How to Answer, "How are you?"
- Hope Springs Eternal - Illness and Art
- Feeling "Like the Dog..."
- Be a Guest Blogger!
- "You Don't Look Sick" Can Sting
- Study Surprisingly Shows that Chronic Illness is a Taboo Subject
- You Know You Have a Chronic Illness When...
- What Awareness Colors Mean for Health
- When Your Spouse Doesn't Believe You are Ill
- Winning Your Disability Case in 3 Words
- When Friends Turn Away
- Making Desireable Changes
- No Cast, No Cane, No Pain
- Articles to Read
- I Never Know What to Say or Do!
- Is "Dear Abby" Confused About Invisible Illness? Why Not Give People the Benefit of the Doubt Sometimes?
- Lab Tests When You Are Chronically Ill: Do you wait for results... or call?
- Do You Think of Yourself as Sick?
- Unlikely Chameleons, Living with an Invisible Disease
- My Husband Lives With An Invisible Chronic Illness Too – “But he looks so good!”
- From “It’s all in your head” to the “Accidental Significant Find”
- When Your Doctor Gives You "The Look."
- 51 Ways to Encourage a Chronically Ill Friends
- When Your Illness is Embarrassing Who Really Wants to Hear About It?
- Can People with Invisible Illness Park in the Blue Spots Without Others Seeing RED?
- Why My Invisible Illness Makes Me a Label Reader
- Should I Claim the Label to My Illness as Part of My Identity?
- Seeing Isn't Always Believing
- How Should the Chronically Ill Respond to Well-meaning Christians?
- Parenting with a Chronic Illness
- Beat the Heat - 10 Tips for the Chronically Ill
- No One Knows the Real Me...
- Explaining Invisible Illness is Hard!
- How a Church Care Ministry Can Help The Chronically Ill
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
Jenni 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!
Kes 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!
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.
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
Lisa 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.
Why do we say we have an invisible illness?
Is is because we feel invisible to people?
As I have been planning and promoting Invisible Illness Awareness Week I have been able to see a magnified version of what kinds of posts and tweets people respond to. Even here at the II Week website you will find 20 Things to Say to an Ill Friend or 20 Things Not to Say to an Ill Friend, Can You Be Friends with Someone Who Thinks You are Faking Your Illness, and more. All of which encourage people to share.
There is a lot of conversation about “us”– and “them.” Those who get it–those who don’t. We use terms to describe our communities like “spoonies” and healthy people as “normals.” And we can easily slip into sarcasm as a way of avoiding talking to our loved ones about our true feelings.
Why is there so much emphasis–and desire–
to talk about relationships?
The “hot topics” about invisible illness are often related to those relationships.
We talk about how our relationships affect our illness.
. . . And we talk about how our illness affects our relationships.
We talk about marriage and how communication (or lack of) can make our illness worse.
. . . We talk about how support from a spouse can help us cope so much better.
We talk about bosses and our co-workers. And should we work and why we work and how we work.
. . . And how we feel when we can no longer work.
We share our stories about our young kids, our teenage kids, our adult kids, our troubled kids.
. . . And some of us wonder. . . should I even have kids?
We talk about our mom and our dad and if they believe we really are ill.
. . . And we talk about caring for our mom or our dad, because now. . .
we are the caregiver. . . because they are ill.
And sometimes we feel better.
And sometimes . . . we don’t.
What does this have to do with our actual disease?
Regardless of your illness, it likely has many names. Chronic, degenerative, disabling, terminal, auto-immune, neurological, benign . . . and invisible.
When we say we have a “chronic illness,” we are specifying the length of time this illness is likely going to stick around.
But when we say we have an “invisible illness” we are describing a condition that is hidden.
Which shouldn’t really matter.
It shouldn’t really matter whether people can SEE that inflammation, cells, digestive issues, chemical imbalances, infections, blood sugar, high blood pressure.
Because it’s still there. But somehow it does matter.
People want to look at us, sum us up, see something to prove what is really going on inside of us because then they know the message to give us. If it is all in our head, then why would they need to search for the right words in this awkward situation? They want to fix it, to help us feel better, but sometimes that comes out as, “find the positive, get some grit, grin and bear it.”
They need to see what is wrong with us, so the can say, “oh-h-h, now I understand.” They want to help. And no one can help until they know what is wrong.
Most illnesses aren’t completely invisible
Your illness may be invisible. No symptoms. None. But maybe not.
We have just become a society that looks the other way, rarely taking time to understand why a person hesitates before standing or who struggles to open the door at the store.
I notice many diseases now, as I have become more familiar with what invisible symptoms look like.
I see the way a woman walks and understand the pain in her feet.
I see a child struggling to control himself and understand it could be the “H” (hyper) in ADHD.
I see a man pause and fight for balance before stepping off a curb and I suspect he is concentrating on that simple step perhaps because of a stroke or a healing hip, or a recent back surgery.
They are not invisible. Even their pain or physical muscle weakness is not invisible. And yet we call the diseases an “invisible illness.”
Why call our illness invisible?
While the words “chronic illness” means long-term, the term “invisible illness” is more apt to describe the overlapping relationship between us and another person. And most of that overlap of us and them may not include our illness, a big part of our reality, and thus, identity.
In the graphic image below, if you live with a disease that significantly impacts your average day, than you and I would be the teal color. The illness is red, and the friend is purple. See what a small area the average friend may see of your life?
Now, some friends would overlap our circle a lot, but if you are struggling to figure out why your friend isn’t “getting it” it may be because he or she is simply not in the circle. Even though a friend may know you, it may just be that sliver of you that is peeking out from behind the disease.
And yet, should our illness be a part of all of our relationships? Consider that we do not expect everyone around us to know our other experiences that define our identity. For example, must everyone know you are a mother, a divorced person, a person who recycles, or a Republican? Must one know you are dealing with infertility, an overdrawn bank account, a teenager who is stealing your medications, or a dog who eats your shoes?
And yet, are those examples the same as a chronic illness?
For some–yes. Your illness may be extremely private to you. Or it may be an inconvenience, but not disabling. Maybe you have more good days then bad days or the idea of sharing that you are too tired to go to the store is breaking etiquette rules.
For others–no. We cannot move or breath or have a life without our illness showing its control over our body. It puts us in the position of fighting for everything.
We fight to have fun, we fight to recover afterwards, we fight to be a parent and then we fight to raise the children, we fight to get up and we fight to go to sleep . . . we fight to matter. To be something other than a person who is ill.
We feel like we need most people to know about our illness because it really is part of who we are. If they don’t know about the fight, they don’t really know who we are.
–Even though we wish it was different.
And this is why invisible illness is spoken of
Many have a chronic illness.
But those of us who are talking about having an invisible illness wish for people to understand us–the real us–not just the shiny, smiling us on the outside. We want people to see more than just the sliver.
Invisible illness is all about the relationship.
It is about how we are perceived. It is about how we are acknowledged, understood, explained, heard, interpreted, rationalized.
It is about our having the strength to become transparent and reveal the ill us. And then, seeking validation for our revealing, which is a human need.
We aren’t looking to be excused or exempt. We don’t want to be pitied or pardoned.
We want someone to say, “I see YOU . . . and I will do my best to be the me you need.”
And that is what every person desires.
. . .Those who live with invisible illnesses.
. . . . Those who live with visible illnesses.
. . . . . . And those who live without any illnesses.
Because you don’t know what the person beside you is fighting for.
So rather than waiting for someone to be what you need, start by being what someone else needs.
Lisa Copen is the woman behind Invisible Illness Awareness Week and as she seeks to encourage others she also has a desire to better understand the emotions behind our wish for validation. She is the author of “Why Can’t I Make People Understand? Understanding the Validation Those with Chronic Illness Seek and Why” and she offers spiritual support at her ministry RestMinistries.com.
Have you filled out the Invisible Illness Week Meme? It’s called “30 Things You May Not Know About My Invisible Illness” and it can be both enlightening for others and even therapeutic for you! I just filled it out and every year my answers change just a bit. Find it–and read others– here: http://ow.ly/om0nS (and tell a friend or a group about it, k?)
Here you will find a list of all of the articles from Invisible Illness Awareness Week with some of our most popular listed at the top. Whatever emotion or situation you are experiencing, the good news is that someone else has dealt with it too.
If you are seeing THIS page, our site had a hiccup. You can FIND THE LIST HERE.
When one lives with chronic illness it can be a struggle to find worth. Those of us who live with illness find it hard to not base our value on what we are able to accomplish that day. When we live in a society that sees busyness as a sign of success it is hard to not feel like a failure.
People with chronic illness or pain, however, are some of the strongest, most admirable people I know. That we cope with life–with the same complication that everyone else has–plus do it with chronic pain. Wow.
Most healthy individuals stop everything when they get sick. Having a cold or the flu means going into comfort mode. The work stops, the family helps out, and even if the there is a lack of help and support, most things in life can wait a week or two until the person feels better and is able to catch up.
For the chronically ill person, however, this day of catching up when they feel normal again never occurs. And yet, those of us with illness still live. We plan short trips, we go to graduations, weddings, and even funerals. We call friends, feed the dog, and make dinner for our family. We may even work outside the home, raise our children (and the neighbor’s too), all while juggling pain, doctors appointments, tests, insurance and medical paperwork.
If you don’t live with a chronic condition, take a moment to listen to a friend describe where it is she finds the strength to go on each day, even knowing that the pain may even get worse? I am sure you will be blessed and find something in her words you can apply to your own life.
TWEET THIS: Things TO SAY to an ill person #20 Where do you find the strength to get up each day and still live? #invisibleillness
PIN IT! Join us at Pinterest for chronic illness tips and goodies. We hope you will help us pin our tips reaching out to those with chronic illness to help spread the word.
(Want to pin the video? Click here & a new window will open)
If you have an invisible illness you have likely heard people say, “well, you look fine” or “you just have too much stress.” I have put together a video featuring a sampling of some of these things we hear. I couldn’t believe how easy it was to write the script, because I just started scribbling down all of the things I have heard over the past twenty years of living with degenerative rheumatoid arthritis.
I didn’t make this video to make people who are trying to be helpful feel badly and I didn’t do it to make those of us who are ill to feel angry with them.
Rather, let’s use this as a learning opportunity. Those of us who are ill can watch this and know that when people say these kinds of things to us it is so common that there is a video with those comments! It’s not personal–it’s just typical.
And for our friends or loved ones we may share it with, it’s a chance for them to possibly hear their own voice and be aware that words really can hurt.
If you like it, please share it! And we also have 20 tweets on this very topic you can share as well. Thanks, friends.
Welcome to 2013 Invisible Illness Awareness Week
What is the 2013 theme?
Our theme this year is “I choose to ______”
How do I upload photos?
How can I tell other people about this?
We have many ways to make this easy for you so just choose below the ways that work best for you.
- Tweets (140-character awareness stuff) you can post on Twitter, Facebook, LinkedIn, anywhere, anytime
- Short posts about Invisible Illness Week that can be posted somewhere like Facebook or your blog.
- Buttons to share
- Blog about it!
- Post your photos and images of “I choose to _____” You can also share them on Facebook, Pinterest, etc.
Is there going to be a virtual conference like in past years?
There is not. We will have some chat guest on our Facebook page, however. Stay tuned for details and make sure to “like” both our Facebook page and “Event” page so you don’t miss out on any of the information.
If you didn’t get to hear some of the seminars last year, we encourage you check them out. They are all timeless.
If I don’t have a chronic illness can I still get involved?
Of course! We would love to have anyone join us. It’s a wonderful opportunity to better understand what friends and loved ones experience on a daily basis when living with a chronic illness.
Is cancer considered a chronic illness?
Absolutely. There is no discrimination when it comes to chronic illness, and cancer has loads of side effects, some of which last a lifetime unfortunately. If it is a physical or mental illness or condition –or even just a series of symptoms– that is causing you pain, we consider it inclusive.
Is Invisible Illness Week on Facebook?
Yes! And we would love to have you join us there. One of the best parts of Facebook is that it is an easy way to share the things you care about when people who are in your circle without having to push it on them. The more you can share about this the more people we can reach and we are excited to see how it grows.
Here is our NICIAW Fan Page and here is our National Invisible Chronic Illness Awareness Week “Cause” Page .
Each have perks the other one doesn’t have so take a moment to join both!
Is Invisible Illness Week on Pinterest?
Rest Ministries, the sponsor of NICIAW has an entire Pinterest account here. You can find our boards here:
- Invisible Illness Stuff
- Invisible Illness Week
- I CHOOSE TO photos from 2013 we have shared
- Invisible Illness Week Speakers from 2012
- Invisible Illness Week Images of Hope from 2012
Have a question we’ve not yet addressed? Contact us at the button above.
Is anyone out there?
One challenge that I particularly face, especially when one considers it is a rare condition–is simply by trying to find an audience for my blog. Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself. As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.
Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease. But still the question remains whether my blog is helping and making a difference to others. Do I have something of value to add and share with whole health community?
I am too tired to write
The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell. A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity. Us health activists need to attempt to learn to balance our lives. Health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.
The challenge of educating those who are well
And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well, that it is not always the reality.
And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful. Some examples of things not to say to a person with an invisible chronic condition are:
“It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner
“It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist
“You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating. For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others. For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others
“Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is.
And there are many more! Can you think of others that people say to you which are not helpful? Please share them with us and perhaps I can do a follow-up piece on the topic!
Rhiann Johns was diagnosed two years ago with what is called a long-standing brain stem lesion and spastic paraparesis. This basically means that she has scarring on the brain stem which, for her, causes chronic dizziness with frequent episodes of vertigo with visual disturbances. The spastic paraparesis causes stiffness and weakness in the legs, making it uncomfortable when walking and means that she is unable to stand for very long. Although, she was only diagnosed 2 years, she has had this since she was born, although the doctors are unsure of how it happened. Although, she has always had problems throughout her childhood and teenage years, she was able to still gain a BSc Psychology. Recently, her condition has deteriorated a lot.
She blogs about it frequently at My Brain Lesion and Me
Part of the challenge of living with an invisible illness is explaining it.
I mean, if we lived isolated and it was you and your illness on a deserted island, would it really matter if it was visible or invisible? Not really.
It’s trying to find our place in a culture that values health and who pretty much believes, if you are ill, you must have done something to cause it. We find ourselves defending it, trying to show the legitimacy of it. We can get caught up in explain illness and all that it entails rather than just focusing on being the healthiest ill person we can be.
Many of the seminars this week have focused on how to better explain your illness to those who expect to see the pain you are in. Wayne and Sherri discussed things people say that are not (and are) helpful; Georgia talked about how our personality styles can make a difference in how we respond to being “cheered up.”
Rosalind discussed what it’s like when your peers at work cannot see your illness. Mary talked about how much talk about it is too much. And Tiffany described ways to try to educate those around you. More seminars coming up talk about marriage, and recovery and trying to explain illness to those around us.
Can we admit. . . it’s tough, isn’t it? Even when we have people who sincerely want to learn what is helpful and hurtful, it’s still hard for them to remember all the time because (1) they don’t live in our shoes–or rather, in our body. (2) Since they don’t have the daily pain, they can easily forget. It just slips are mind. We all have a lot on our mind, so can we really blame them?
But the key here? We keep trying. We offer suggestions. We allow others to make mistakes. We give grace when we are angry. We learn to take care of ourselves, by stepping back from certain relationships, and we learn when to take what someone can offer and lower our expectations.
I put this little video together last year for Invisible Illness Awareness Week and it has nearly 9,000 views. You are not alone. We are in this together. And remember, when people say things that hurt, it is because they don’t know better. They don’t know it’s bad etiquette. Most the time, they are not trying to be hurtful–they just don’t know how to help.
Did this hit home with you? Do us a favor and pass it along to encourage someone else. Share it, pin it, whatever — we appreciate it!