Author Toni Bernhard shares six common things people believe about having a chronic illness that aren’t true.

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6 Common Misconceptions About People With Chronic Illnesses

Misconception #1: The way a person looks reflects how he or she is feeling physically.

The truth is… there I am, “looking great,” while my body is pulsating with flu-like symptoms.

Misconception #2: If people’s mental state makes them feel worse physically, than their chronic illness cannot possibly be physically based.

The next time you feel under stress — can you feel that your muscles have tightened?

A person’s mental state can easily exacerbate the physical symptoms of chronic illness.

Misconception #3: “Radical rest” will assure that the chronically ill will feel better than if they didn’t rest.

Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

Misconception #4: If chronically ill people are enjoying themselves, they must feel OK.

People who are chronically ill have learned to put up with the symptoms of illness.

Misconception #5: Stress reduction techniques are a cure for chronic pain and illness.

Stress reduction techniques can be effective symptom relief, but they are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

Is being home all day feeling sick and in pain a dream lifestyle? I think not.

I hope that, someday soon, we can say these are six uncommon misconceptions.

Written By Toni Bernhard

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Back-to-school time may bring a sigh of relief to many parents, but for those living with chronic illness, it can bring a host of challenges. At times, schools, teachers and other parents are unaware parents are even struggling and, when they do know, often have no idea how to help. I want to change that. Using both my own struggles and speaking with other parents living with chronic illness, I’ve created a list of things that can help. Print it out and make sure your school has a copy – or 10.

1. Making School Events Available

One of the hardest things for parents is missing out on seeing their children in action, from plays to concerts to classroom visits. “My daughter had a play and I had to miss it,” one parent shared. “It broke my heart to not see her.”

 

a) Videotape buddy. “Schools could easily match parents up with a “videotape” buddy, either a parent in the same class or a school volunteer who could tape events or Skype parents in. The value in being able to see your child in action without having to go through the logistics and pressure of asking every time can’t be overstated.

b) Physical accommodations at events. For others, physical accommodations are the difference between being able to attend an event or not. Personally, while I’m usually able to make it school, I’m unable to stand through even a short event. Knowing there’s a guaranteed place to sit reduces emotional and physical tolls on my body. Some other accommodations include access to: parking spots, private bathrooms or a quiet space.

2. Alternatives to Parent/Teacher Conferences and Other Meetings

Similarly, conferences can be challenging on several fronts. The traditional format doesn’t always work.

a) Offering video conferences. Providing an option to have the conference via video is a game changer. As a former teacher myself, I hold the parent-teacher conference as sacred, but this year, on the day of my daughter’s, I was struggling to get out of bed and knew I’d never make it to school. When her teachers agreed to FaceTime instead I almost cried from relief, knowing I could participate without setting myself back.

b) Providing written notes for key points. For many parents, attending a conference is one thing, but due to brain fog, a cognitive impairment often present in chronic illness, retaining the information is another. “I’d love to have a write-up of main points, or follow-ups,” one mom said, “because I’m there, I’m trying to process, but often half of it’s gone.”

c) Offering video for other meetings. This same idea applies to other meetings, such as PTA or other committees. “I never can join parent meetings or social events,” one parent said. “I wish the meeting would be on Skype or they would at least write what happened.”

3. Drop-Off and Pick-Up

Almost every parent I spoke with mentioned the challenges of drop-off and pick-ups. One parent explained, “Sometimes we have to stand for 15 minutes while waiting. I can do it, but then that’s pretty much all I can do for the day,” adding that because she didn’t “look ill” no one understood.

a) Make parking available for parents either by opening up disability spots or the faculty lot, or reserving a temporary space.

b) Provide a designated adult to walk kids to the gate, car, etc. While schools usually let parents designate someone to do this, many parents don’t have someone they feel comfortable imposing on, on a day-to-day basis, so facilitating this would be remarkable.

4. Don’t Penalize Children for Fallout From Parents’ Illness

Many parents mentioned concerns that their children come under scrutiny for things ranging from having incomplete uniforms or “sub-par” lunches. “I just want the school to know, it’s not my child’s fault and I’m doing the best I can,” one mom said.

a) Make allowances for lateness. While no parent has an easy time getting out of the house in the morning, for parents with chronic illness it can be more challenging than launching a shuttle into space. From fibro fingers, struggling with buttons and bouts of vertigo to simply not being able to move as fast, the obstacles are endless. One single mom shared how upsetting it was that her son had marks against his attendance for lateness, suggesting, “There should be a commodity for parents with disabilities.”

5. Consider a School Liaison for Parents With Disabilities

If the above at first seems daunting to a school, realize that once a system’s in place, it can become quite simple. One parent shared that her school had a designated liaison for parents with disabilities and it made an amazing difference. That person was the designated contact between the parent and teachers and administration, facilitating much of the above and anything else that arose.

Implementing the simple steps above can create positive effects for a parent and child that will ripple through a lifetime. There is no price you can put on that.

This post originally appeared on Lupus Chick.

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Thinkstock photo via Dynamic Graphics.


Isn’t it bizarre how a picture can hide so much? How a simple picture can mislead people to believe someone is over-dramatizing their situation? If they are smiling, they must be OK, right?

So many people of all walks of life are slipping past others’ radars because people don’t take an extra second to see if people really are OK.

A picture can be worth a thousand words. Words unspoken, words unseen, words looked past like they are nothing. Why?

woman wearing a coat and beanie outside on a snowy day

The girl in this picture, for instance. Let’s talk about her and let’s reveal all of her secrets that lie beneath the surface of her existence.

That smile is big, bright and beautiful, isn’t it? That smile is something she is complimented on daily. Did you know she’s practiced it in the mirror over and over again until it looked believable to not only everyone else, but to herself as well?

Did you know she’s in pajama clothes 99 percent of the time because pants hurt her even more? She wants so bad to document the one percent through pictures.

 

Did you know she always has her arms crossed to hide the bruises the IVs caused?

Did you know that behind her fragile mold and brave smile, she is scared?That she constantly questions her worth? That every negative comment from people just chips away at her already fragile self-esteem?

Did you know she critiques every picture she ever takes because she feels like she isn’t pretty?

Did you know she wants so badly to be heard, to be acknowledged? That every failed doctor visit has weighed her down? That she is tired of being stuck in the same four walls every day, wondering if her existence even matters? That she is screaming out but no one hears her?

She feels broken. She feels fragile. She feels scared. She feels weak. She feels sick.

But you couldn’t see all of that, could you? A picture holds a thousand words – if you look closely, maybe, just maybe, you’ll see them.

woman wearing a hat and smiling

I urge anyone who is reading this to look around you. Study people. You’ll learn a lot. Don’t judge, just watch. Realize clothes, makeup and even a smile can hide a lot. People wear their story on their face – do you see it?

We want to hear your story. Become a Mighty contributor here.


For someone with not one athletic bone in their body, I’m extremely competitive. I love a good challenge, but I’m also a perfectionist. So every time I see a fitness challenge (a la “This 30-Day Challenge Will Give You the Buns of Your Dreams”), I have to take it. The problem is I never succeed.

That’s partially because:

1. If I can’t do something perfectly, rather than cut myself slack, I force myself to go back to “Day 1” and am perpetually stuck in what becomes a 900-day squat challenge where I only make it to “Day 12.”

2. These challenges aren’t designed with my health limitations in mind. (And yes, I can, and often do, adapt them to fit my needs. But the real challenge is finding 30 days in a row where I feel healthy enough to achieve those dream buns.)

When we first started our My Mighty Month challenge series back in January the idea was to make challenges you’d see in lifestyle publications more accessible. Unsurprisingly, one of the most difficult challenges to make inclusive is exercise.

Being in pain, feeling depressed or having limited mobility can all make it difficult to get out and move. Not to mention, living with a health challenge can make completing a 30-day or eight-week exercise program difficult. What if you have a flare on day 15, or depression makes getting out of bed during week three impossible? Should you give up on all physical activity because you can’t be consistent?

No. No, is obviously the answer to that question. But it can be hard not to beat yourself up if all of the sudden you are making progress and then… BAM. Life and your health gets in the way, and would you look at that? It’s been three months since you set foot in the gym.

That’s why this month’s challenge is staying active. For 30 days, we’re challenging you to move. How much you move, however, is up to you. If you are feeling up to it, go for a stroll or a roll down the block. If you can’t get out of bed, try and do some stretches either lying or sitting down. It doesn’t matter what you do, as long as you dedicate some time every single day to physical activity.

To give you an idea of different ways to stay active, we spoke to some experts. Click below for more information on how to:

If you want to keep track of the progress you’ve made, simply download our monthly habit tracker. And if you are too sick or in the hospital and miss a day, don’t beat yourself up. It happens to all of us.

Want to make September a Mighty Month? Join us on Facebook at My Mighty Month, and don’t forget to tag any social media posts with #MyMightyMonth. You can also sign up for our weekly email, (select “Mighty Monthly Challenges” from the newsletter options), which includes tips and reminders designed to keep you motivated. 

Header image via Rogotanie.


Many in the chronic illness community may identify as “spoonies” – a term referring to the spoon theory, written by Christine Miserandino to describe the limited energy many chronic warriors have each day. Battling chronic illness and keeping track of how you spend your energy, or “spoons,” can be exhausting both physically and emotionally. During these difficult times, it can be helpful to have a visual reminder to keep going – something meaningful to you and representative of all the battles you’ve already conquered. For many, this can come in the form of a tattoo.

We wanted to see some of the creative tattoo designs those with chronic illness have chosen to commemorate their journeys, so we asked our Mighty community to share photos of tattoos they got in honor of being a spoonie. These tattoos are not only beautiful, but they are reminders of the strength these warriors have in fighting the chronic illness battle every day. (Check with your doctor about any potential side effects of getting tattooed.)

Here’s what the community shared with us:

1. “The spoon is from the ‘spoon theory,’ the blue and green are for idiopathic intracranial hypertension and the zipper is for Chiari. The text ‘I have, I can, I will’ is a reminder I’ve made it through and will continue to make it through this battle.” – Sabrina M.

spoonie tattoo

2. “I have postural orthostatic tachycardia syndrome (POTS), and turquoise is the awareness color! Since part of POTS is your heart rate spiking when you stand up, I got a heart. It reminds me I have the strength to fight!” – Linnea F.

tattoo of an anatomical green heart

3. “Reminding myself I am a fighter against rheumatoid arthritis.” – Eileen D.

tattoo that says 'fighter'

4. “I have ‘never give up,’ as a constant reminder of what I have overcome and continue to overcome every day. I also have a sunflower, because just like the sunflower I continue to grow stronger and overcome hardships by searching for the light in my life. It reminds me how tough I am and to seek out the things that make me happy and make me stronger.” – Lauren C.

black and white tattoo of sunflower and words saying 'never give up'

5. “This is my lupus tattoo. Purple for lupus awareness. Butterflies for lupus awareness. The big butterfly at the bottom outlined in black is my representation of a flare – big and angry.” – Sarah H.

tattoo of a purple butterfly

6. “It helps me remember that even on days where I feel like I can’t possibly go on that I can and I have before.” – Jacqueline E.

tattoo that says 'still i rise' with a semicolon

7. “I got this tattoo to remind me that what I believe is what I’ll achieve, and to keep me positive at times when I felt I was failing. It has taken years to realize I am still me and am still capable (at times) despite my conditions.” – Carole-Anne R.

tattoo that says 'imagine' and 'believe'

8. “I had my friend – an artist and tattooist, Sarah Scott – design this for me for the days I fight my way through despite the cost because fibromyalgia and chronic migraines and headaches are not all I am.” – Jennifer W.

tattoo that says 'no spoons left, only knives' with two knives

9. “Pretty self-explanatory. I had this quote on a magnet on my fridge for a really long time, so when the opportunity came around to get it tattooed, I did just that. It reminds me to always try to look for the good in the bad. I had an abusive childhood, and have depression and anxiety, and have had chronic daily migraines for six years. So sh*t gets tough.” – Michelle M.

tattoo that says 'just when the caterpillar thought the world was over he became a butterfly'

10. “Since becoming sick with autoimmune diseases, it’s been a challenge to not let health management take up all of my very limited number of spoons. Attending doctor appointments, filling scripts, researching potential treatments, planning meals that don’t make me sick, taking planned rest breaks, keeping a health journal, etc. is a full-time job. This tattoo (based on 1960s wallpaper) is a reminder to keep some spoons spare for doing the things I love – one of which is retro/vintage shopping – because it’s vital to maintaining my mental health and connection to who I am.” – Carlie P.

tattoo of orange and purple flowers

11. “About eight months ago I got my first ever tattoo, called a Ta Moko. Being from New Zealand I wanted to get something to symbolize my Maori culture. My Ta Moko has four main symbols in it that tell a story about my life and my future. There is a Manaia which I choose to have put on as a tribute to a family member who I was close to that passed away. A Manaia symbolizes a spiritual guardian and acts as a provider or protector. There are also three Koru that symbolize my spiritual, mental and physical health. There’s​ also shark teeth that symbolize strength through adversity (Crohn’s disease) and lastly stars, which are in threes, and they symbolize the journey I have to go in my life and guiding me down the right paths.” – Dominique S.

tattoo of maori symbols

12. “Me and a spoonie I became friends with online got so close we ended up meeting. We decided to get matching tattoos in honor of our battle with gastroparesis. I absolutely love it. Gives me hope every time and reminds me I’m not alone.” – Nikki A.

two women with matching 'hope' tattoos

13. “This is my spoon tattoo. The blue ribbon is for RA, my primary diagnosis. The three spoons are a reminder to keep a spoon for my husband and two daughters. I get asked all the time about it and it allows me to share my story and educate others. Because I’ve shared my story I have met others with chronic illnesses that didn’t even know about the communities we have online.” – Melanie W. B.

bouquet of spoons tattoo

14. “A windmill and a lemon. The windmill is a Chinese proverb – ‘When the winds of change blow, some build walls while others build windmills.’ The lemon is ‘When life gives you lemons, make lemonade.’ The wind/lemon in question is fibromyalgia – my tattoos serve as a reminder to keep building windmills and making lemonade, even on the worst days.” – Becca M.

tattoo of a windmill and a lemon

15. “This one I got for my POTS. Helps me to remember to be strong. Right over my heart.” – Tera S.

tattoo of a heartbeat

16. “Got this a couple of days ago. No color yet but the butterflies will be purple and there will be a rainbow as well. I was really inspired in the last tattoo post here and sent the fibro tattoo post to my artist. It’s my first tattoo, signifying everything I’ve been through and my hope for the future.” – Nairmi R.

tattoo with music note and butterfly

17. “In honor of being a Zebra who wears her heart on her sleeve… ‘Just breathe’ and the infinity sign to remind me that the only constant is change and the splash of colors because I will never dull my shine no matter what my illnesses throw my way.” – Tara M.

infinity sign tattoo with the words 'just breathe' and a heart filled with zebra print

18. “For the chronic pain of fibromyalgia. Because while I don’t believe ‘whatever doesn’t kill you makes you stronger,’ I do believe we draw the greatest strength from the most painful moments in life.” – Kathleen H. C.

tattoo on a woman's shoulder

19. “Colors for intracranial hypertension (IH) or psudotumor cerebri (PTC) are blue and green. Was my very subtle nod toward acknowledging in ink without worrying about too many questions in public.” – Kate C.

a moth with blue and green wings

20. “A spoon blended with the chemical compound of dopamine. To always have an extra spoon up my sleeve and to try to create my own happiness from the pain. Non-spoonies don’t get the concept, but it honestly gives me strength on the really bad days.” – Leha H.

spoon tattoo with chemical compound for dopamine

21. “This reminds me to keep my last spoon for myself…” – Ambyr T. M.

tattoo of a spoon with the words 'my last one'

22. “(‘Courage is being scared to death, but saddling up anyways.’ – John Wayne) This is a quote that helps get me through some of my toughest days.” – Sabrina H.

white ink tattoo that says 'courage'

23. “The tree of life. A lotus. Taoism moon and sun balance. Sacred geometry flower of Life. Unaalome spiritual path. All to remind me balance in life. It is on my foot to stay grounded. To do what I can when I can, dream, try and be when I need to be, whether that’s to be still, sleep or push past my boundaries when I feel it’s worth it. The moon and the sun to show even in the darkest times the sun will come out again and it will get better. But ultimately to live life how I can and as well as I can on my own terms.” – Tara R. B.

tattoo of tree of life and lotus flower

24. “My best friend and I both have had scoliosis surgery. We got matching tattoos to show that we are survivors and as a reminder to always keep fighting!” – Mandy D.

two women with matching tattoos that say 'survivor'

25. “Warrior with paint colors around it. No matter what may be thrown at me I will fight because I am a warrior.” – Jessica U.

warrior with colorful paint splashed around it

26. “Believe in your dreams. Because anything is possible and you shouldn’t give up hope on achieving your dreams.” – Christy P.

tattoo that says 'believe in your dreams' with a disney castle

27. “This is my spoonerfly. I got it for my multiple sclerosis (MS) given that one of the symbols is the monarch butterfly and the color for it is orange.” – Kerie P.

tattoo of a butterfly with a spoon

28. “‘Family is my strength’ says it all. My family are what keep me going.” – Laura-Jane S.

tattoo that says 'family is my strength' under an IV

29. “I’m a dandelion! And despite all odds I’m going to grow and grow. I refuse to wither and die! I know I will wilt from time to time, but I will always bloom again another day!” – Allyce O.

bouquet of dandelions tattoo

30. “I got my spoon on my arm.” – Clair V.

tattoo of a spoon


Chronic illness side effects are convoluted and often forever. They include losing sleep and friend – as well as coming to terms with limitations, bills and accepting that you always be in some level of pain. Thus creating emotional repercussions that aren’t listed on the injections and numerous pill bottles which live in my cabinet.

There are fears, tears and physical changes that make your past self a stranger. Who’s that woman in the photo with muscles from boxing and strong thighs from running? I miss her. A lot.

There are waves of rude bitterness, dark moments of self-loathing and isolation. The bitterness of what used to be, aching for normality others take for granted and pressure to keep up with who you want and used to be. None of these were listed in the many sheets of paper handed to me when I was also handed my diagnosis.

There’s depression and desperation. To do your part at home and at work like me, if you are lucky enough to work full-time. There’s a sheer terror that someday your body will run out and even that will be taken from you. This triggers a deep need for normality. To hide mortifying bodily and emotional side effects, allowing a frantic need to be well, to be enough.

Friends and family, with the best intentions, become an endless infomercial of late night TV cures, diets and exercise plans. Certain side effects are long-term and complex. I hate to break it to you, but your essential oils will not cure me. This disease lives within the soft tissue of bones and cartilage. Forever. The side effect of a garden I did not sow.

All this includes a complicated array of pills, injections, society and self-induced norms, and pain. I can tell you that you learn who you are at 3 a.m. when your body is too loud and your soul is so God damn tired. You see who your true friends are and just how much they and your family love you.

And since we’re being honest here, I want you to know this also creates humor. The ability to laugh, to sob myself to sleep and wake up grateful in the a.m. I am resilient ways never imagined, simply because I know all of these terrible, lonely things. Compassion for others has become a badge. I see you, the fake smile, beads of pain sweat on the upper lip and hear hundreds of, “I am well, and yourself?” replies. I don’t pity you, or feel sorry for you because I feel none of these things for myself. I see you fighting. The side effect of that is hoping you see me fighting too.

Other side effects are being joyful when my body belongs to me. Waking up and getting out bed almost instantly when the alarm yells. Pure gratitude for a hot shower, warming myself in the sun and doing for others when yesterday I couldn’t do my myself.

I don’t know what tomorrow brings. Yet I will seize beauty, kindness, and love in every second. Becoming chronically ill helped me shift into being chronically grateful. Chronically empathic. Forever rising. Tying my own shoes… that’s a good day my friends.

Smoke ’em if ya got ’em, raise ’em up and don’t let this bastard of a disease tear you down.

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Thinkstock Image By: Popmarleo

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