City commuters. Abstract blurred image of a city street scene. with text 20 things people dont realize youre doing because of your invisible illness

20 Things People Don't Realize You're Doing Because of Your Invisible Illness

Having an invisible illness means outsiders may not notice many of the symptoms and/or side effects of your illness. They may also be oblivious to the things you do each day to cope. What looks to others like relaxing on a chair may actually be your way of lessening your pain. Wearing sunglasses indoors may seem like a fashion statement, when really it’s a necessary migraine prevention tool.

We asked our Mighty community to share the things they do that people don’t realize are because of their invisible illnesses. If people take a closer look, they’ll see the adjustments and strategies you use to cope with your illness every single day.

Here’s what the community told us:

1. “Canceling plans or avoiding making plans with friends. It’s not that I don’t want to see them, it’s that I don’t know if I’m able to even get myself dressed that day. I feel so bad, and I may seem flaky, but it’s not me, it’s my illness.”

2. “I don’t eat when we get invited out to dinner or at parties. Most food isn’t Renal diet friendly and not prepared clean enough for my immunocompromised immune system. I’m not trying to be rude, but I can’t risk my health to make a host feel good about themselves.”

3. “I often have brain fog due to Ehlers-Danlos syndrome. When the brain fog hits it’s like a tidal wave. I often will mess up the simplest tasks. I once destroyed a decorative burner cover by forgetting to remove it from the burner before trying to cook rice.”

4. “I wear sunglasses indoors because my sensitivity to light is so bad that it causes severe pain and nausea. Even with sunglasses on outdoors, if I don’t have a hat, I need to shield my eyes with my hand like I’m saluting someone. People tend to make sarcastic comments about these things without realizing I’m doing this to minimize my pain.”

5. “I show up early to church to be able to sit in the comfortable chairs up front due to my chronic back injury and my heart-related complications. I often have to sit through most of the worship service.”

6. “At work (the days I can actually make it in) I put on my headphones and tune out the world. Whether I’m listening to music or getting lost in a book, it helps me focus on something other than the pain.”

7. “Not letting people come visit me at my house or just stop by to drop stuff off because the inside of my house is a disaster. I can’t keep up with the cleaning because I have to put all my energy into everything else. I usually just blame it on the dogs.”

8. “When dining out, I’m not trying to be a diva by asking to swap seats or adjust the lighting. The smallest flash of light can trigger an attack, and I don’t want you to witness that, especially in a public place.

9. “One thing I’m sort of self-conscious about is wearing a visor or hat, even indoors. I get headaches very frequently and even the smallest bit of light can cause me to get such a sharp pain that I have to close my eyes and stop moving for a bit.”

10. “When shopping, I park next to a cart corral with carts in it instead of looking for the closest parking spot (no disabled tag or sticker on my car – yet). That way, I have a cart to lean on when going into the store and I don’t have to go far to return the cart after shopping.”

11. “I use an Altoid mini case for the medication I need to take when I’m out in public. I keep my full bottles in my purse, but if I’m at work or at a meeting, I don’t want my peers to see me as someone who is sick so out come my breath mints.”

12. “I fidget a lot in class and constantly stretch or move around in my chair to keep everything in place and minimize stiffness from settling into my joints. To my classmates and professors it just looks like I can’t sit still, but I know I will be in pain later if I didn’t move.”

13. “I hold my breath when I am around people so I don’t sigh or groan from pain (then I don’t have to keep explaining what’s wrong…). It also helps me with my anxiety.”

14. “I arrive at appointments early. I can’t help it; I get so anxious about being late, and I also need to mentally prepare for the appointment. So I get there early and crochet or fiddle with a good fiddle tool.”

15. “I wear my heated wrap and scarves all winter and, keep my long hair – all to keep my neck warm so it doesn’t hurt so much and keep the muscle spasms and nerve pain to a minimum.”

16. “I concentrate on not falling down when I stand or walk. Just doing that is very tiresome but people take it for granted.”

17. “In the Netherlands we kiss three times on the cheek. However I try to avoid this as I have multiple sclerosis and don’t want to get extra germs and viruses. And when people are sick, even with a cold or the flu, I have to leave to protect my own body. People find me disrespectful as they feel like I avoid them like the plague; however I’m not so worried about them being sick, more me getting sicker and possible losing body functions or needing to go to hospital.”

18. “I’m constantly taking in my environment — where are the exit doors, the bathrooms, is the room to silent or are there enough sounds — so if my stomach makes weird noises nobody will hear.”

19. “I can’t hug people or shake hands because of my extreme multiple chemical sensitivity and I don’t always have time, energy, or the will to explain myself to everyone, so I just say ‘I can’t hug’ or ‘I can’t hold hands,’ and people are weird about it, especially the handshake one after they’ve ‘offered’ me their hand already. Oh well!”

20. “Everyone thought I was trying to be edgy when I had my head shaved. In reality my condition causes me not to have the energy or finances to wash and style my hair every day, plus the weight of long hair, ponytails, and headbands were causing lots of pain. Now I wear a buzzcut because it’s easy, cheap, and keeps the pressure off my scalp. A bonus is easier access to head rubs!”



Living With a Chronic Illness in a City Without Lyft or Uber

As the economy continues to evolve throughout the country, ride sharing programs such as Lyft and Uber have become a must-have in every city. Their prices are much more reasonable than a taxi and the drivers are quite friendly. But there is also another benefit to these companies that many people overlook — namely, safe transportation for many people with disabilities to appointments, hospitals, pharmacies, and grocery stores.

As someone who has a chronic illness, there are many days where driving is not even an option for me due to the physical symptoms and brain fog that come along with the illnesses. While that may seem like it has a simple answer of, “Well then don’t go driving,” it’s not that simple.

Chronic illnesses often require a full-time job’s worth of physician appointments, therapy, physical therapy, massage or other holistic medicine, pharmacies for medications, and many other things that fall within or in between these categories. Many times scheduling doctor’s appointments requires planning months in advance, especially for a new patient appointment.

When a patient with a chronic illness is unable to drive and unable to work, their income is severely limited. I will note that this also includes those who are caught in the savage process for disability coverage in the US resulting in two-to-three-year spans or longer (and that’s just waiting to see a judge) with a zero income. Sure you get back-paid, but in the meantime you have to eat, you have to go to appointments, you need insurance, and you have many other bills that don’t simply disappear when you suddenly become disabled.

Furthermore, patients with chronic illness are often faced with the unpredictability of the illness or illnesses. It has no rhyme or reason, and often can not be predicted in advanced as to what days will be good or bad. When a bad day arises and it is unsafe to drive, the patient is faced with a huge dilemma. It’s already hard to afford the appointments but they are a necessity for any sort of wellbeing. If they cancel, offices do not recognize that there are often legitimate reasons for canceling day of, especially for a patient with an unpredictable chronic illness. Trying to drive there would be like your brain wearing those drunk driving glasses from drivers ed; you see everything in front of you but the brain is unable to successfully process the signals it is getting due to the interference and murky field of vision it has on the matter. Now what?

There are a couple of options.

1. If you live in an area with decent enough public transit you can do this. However, safety is a huge concern with this as waiting out in the heat or cold is extremely dangerous to many with a chronic illness, let alone having to stand, walk further as stops aren’t close enough, or embark on over and hour or more ride having to leave at a very inconvenient time, taking up way more of their already severely limited energy supply.

2. See if friends and family can take you. That’s fine if it’s once and a while but others work and have their own responsibilities to attend to. This is generally not even an option in a very short span of time on the day of. It further reduces this as an option if you do not have family nearby or at all.

3. Call for a taxi. Most taxi rides today, practically from here to the corner are running upwards of $20 or even more. My last taxi ride a few years back was $57 from home to the nearest Walmart. The Walmart was only 15 minutes away. Not only is this a ridiculous amount of money, but it is quite literally highway robbery. Try affording that plus co-pays, plus food, plus medications, plus housing on a zero income. Good luck.

4. Walk. Haha yeah… if public transit has its safety problems for those with chronic illnesses, many of us whom are lucky to walk to the bathroom when we need it (still with excruciating pain) are screwed. Talk about a safety issue. Plus imagine a five- to 10-mile-away office or further. Care to join on this walk? Here’s a box of thumbtacks to put in your shoes for the little journey.

5. Medical transportation is not only rarely available on a day of need, but the prices for these services can be outrageous. They are often late and unreliable, resulting in still missing the appointments whether you wanted to or not. Never mind the extra energy needed to set this up and the process of insurance debacles associated.

So what other options would a person have? Before a few years ago, a hope and a dream. But today, a new way of doing things has come about. Ride sharing services like Lyft and Uber have provided many who face these issues with a solution that is not only convenient, but more reasonably priced, safe, and reliable. Add in not needing to process a payment directly with the driver and it becomes even more easy.

But what about those of us with chronic illnesses in places such as upstate New York? That’s right, New York City may have Uber and Lyft, but upstate New York sits awaiting its lawmakers to do something despite numerous overwhelming pleas from the community in all sectors across the entire state. For us, we are stuck seemingly in a twilight zone. It is a space between the present day and the past. The innovation is there just outside of our reach, but yet the leaders above us deny us the basic rights of a free economy and thus impact our health care in a negative way. For us, we are often faced with unnecessary charges from missed appointments, doctors who no longer see patients due to too many of these missed appointments, and high fees for rides from taxi services that should be held accountable for the price gouging tactics they consistently try to justify. But yet it doesn’t have to be this way. There’s a solution to the issue that is running throughout the country successfully and safely. It is there, providing many patients with a safe and affordable alternative for both appointments and medically needed trips, to short trips just to get out of the house on a good day and reconnect with friends and loved ones that the illness may have separated us from.

But unfortunately, many of us out here do not have this access. For us it is not only yet another denial of access to something beneficial, but is actually a barrier to us to receive the necessary health care we need in a safe manner, when the unpredictability of our unchosen illnesses decides to enter stage left.

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A young woman is resting on a wall outside in the mist

Why Calling a Person With a Chronic Illness a 'Burden' Is So Hurtful

Someone who I once considered to be one of my closest friends told me I was a burden to her because I forced her to make sacrifices for me and because I can’t participate in many of the activities that most other teenagers can. I know I’m not the only person who has been called a burden due to their illness, but I’ll explain why I feel so strongly about that word.

The word “burden” can either mean “a heavy load that you carry” or “something difficult or unpleasant that you have to deal with or worry about.” My chronic illnesses are certainly a burden to my life. I carry them with me every day, often feeling physically weighed down by pain and fatigue. It is most certainly something unpleasant that I worry about, as I worry about test results, about how I will feel tomorrow, and about my future. Chronic illness may be a burden to me and my life, but I am not one to others because of it.

I did not choose a life with chronic illness. It is included in the cards I’ve been dealt, and I am working extremely hard to find a new normal where I can be the best and happiest version of myself. It may be true that my friends have to be conscious of my limitations when making plans with me. It is definitely true that my life is not one of a normal teenager. However, I have never and will never force anyone to treat me differently because of my illnesses, especially when all I want is to be treated with the same respect as everyone else.

As for the friends of the chronic illness community out there, I am so lucky to say there are many of you who provide unconditional support and love to us when our lives are plagued with so much uncertainty. But to everyone, I urge you to remove the word “burden” from your vocabulary. People with chronic illness do not exert their illness to make the lives of others harder. All we want is to know there are people standing by us. We are acutely aware of the times that we make things more complicated, making time spent together less relaxed. Regardless, we should not be shamed for something we cannot control. It would truly be a shame for the amazing and beautiful people of this community to be seen only for a single detail part of their lives. We deserve pride, not pity or disrespect.

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

Thinkstock photo by lolostock

One year of epilepsy treatment would cost 21.5 iPhones.

Vera Haynes Illustrates How Many iPhones You'd Need to Pay to Treat 10 Different Conditions

Last Tuesday, March 7, Rep Jason Chaffetz (R-UT) came under fire for remarks he made during a CNN interview in which he suggested people forgo buying iPhones and use that money to cover their healthcare costs. Chaffetz’s comments, which he later walked back, upset those who understand that affording healthcare isn’t as easy as selling or doing without an iPhone. Vera Haynes, a 24-year-old living with type 1 diabetes, is one of those people.

Haynes, a librarian in Hays, Kansas, decided she would help educate Chaffetz and the general public about the true costs of treating a chronic illness with an infographic.

Yearly Cost of Asthma (1) One year of asthma medication would cost 5 iPhones. 

“I’ve been feeling an urge to make or write or do something to help people understand the healthcare debate from the side of people with chronic illnesses, but I didn’t know what that something was,” Haynes told The Mighty. “When I heard the soundbite from Chaffetz, it was like a bolt of inspiration. He unknowingly gave me the perfect tool to explain the true cost of illness in terms everyone could understand.”

From there, Haynes began gathering sources, including peer-reviewed studies and government documents, to create a series of infographics comparing iPhones to treatment costs. For each infographic, Haynes determined how many iPhone 7, which retail at $649.00, would be needed to pay for treatment for 10 different diseases. For type 1 diabetes she would need 35.6 iPhones to pay for one year of medical supplies.

Yearly Cost of Diabetes (4) One year of medical supplies for type one diabetes would cost 35.6 iPhones. 

Each infographic represents the cost of treatment without insurance, a distinction Haynes feels it is important to show. “Yes, insurance might bring the costs down, but by how much?” she said. Haynes recently switched to an insurance that considers more than five blood glucose tests a week “excessive use.” But it’s not excessive for Haynes, whose treatment plan requires her to test three to eight times per day. Without insurance covering her additional tests, each test, beyond the first five, would cost Haynes an additional $10.00, adding between $160.00 to $510.oo – depending on how many tests she needs – per week.

“It took a month of constant calls to my doctor and my insurance representative to convince the company to cover five tests a day,” she added. “There are still days where that’s not enough, but at least it’s something.”

Yearly Cost of Lupus One year of lupus medication would cost 20 iPhones. 

The Affordable Care Act (ACA) has been around for seven years, since Haynes was 17, but she remembers fearing the cost of care and stockpiling medication for after college, when she, pre-ACA, would no longer be covered under her parents’ plan.

“As soon as I was diagnosed, my mom and I immersed ourselves in the diabetes chat boards online, seeking solace and advice,” Haynes, who was diagnosed with diabetes when she was 13, explained. “Everyone on the chat boards had detailed plans to prepare for the time without insurance. Basically, people would start asking their doctors for slightly larger prescriptions for diabetes supplies so you could build up a stock pile. You had to be incredibly careful of expiration dates, but if you started stock piling in high school, you could build up enough supplies to live off of for six months after graduation.”

Because of the ACA, Haynes never had to use her stockpile.

Yearly Cost of Breast Cancer One year of breast cancer treatment would cost 80.9 iPhones. 

The biggest surprise when compiling her data, Haynes said, was the cost of HIV medications. “It’s been in the news a lot in the past few years thanks to Martin Shkreli, but the data I found was from 2010,” she said. “Before Shkreli got his hands on the patents and hiked the prices up, the price of medication was already unreasonably high. No one’s life should cost that much.”

35.6 iPhones needed to pay for HIV treatment. One year of HIV antiretroviral therapy would cost 35.6 iPhones. 

“It’s been a hard few years as someone with chronic illnesses,” Haynes added. “After Trump demanded the ACA be repealed, I was devastated… Chaffetz’s comments pushed me over the edge. His words were like a very personal punch in the gut. How a politician could be so ignorant to the hardships and realities of their constituents is beyond me.”

You can view the rest of Haynes’ series below. 

Yearly Cost of Epilepsy (1) (1) One year of epilepsy treatment would cost 21.5 iPhones. 

Yearly Cost of Kidney Disease (1) One year treating stage 2 chronic kidney disease would cost you 10.8 iPhones.

Cost of IVF (1) One cycle of in vitro fertilization (IVF) would cost 66 iPhones. 

Yearly Cost of Rheumatoid Arthritis One year of rheumatoid arthritis treatment would cost 8.8 iPhones.

Yearly Cost of Schizophrenia One year of schizophrenia treatment would cost 23.8 iPhones. 

Lonesome girl holding a curtain. with text 22 challenges of being chronically ill that will make you say me too

21 Challenges of Being Chronically Ill That Will Make You Say 'Me, Too'

The exhaustion of grocery shopping. The uncertainty of making plans. The comfort in meeting someone else with your diagnosis. If you’ve never experienced health challenges, these situations may not resonate with you — but those who live with a chronic illness may be able to think of an exact time they felt the same way.

There’s no one besides another chronically ill person who really “gets” what daily life is like when you have chronic health challenges, so we asked our Mighty community to share experiences that will have other members of the community saying, “Me, too.” The next time you encounter one of these challenges, remember that you’re not alone — there’s a whole community fighting these battles alongside you.

Here’s what the community told us:

1. “I’m not able to make plans, even if it’s a few hours away. I’ve had days of feeling great in the morning and being stuck in bed later that day. Each concert ticket is a risk, vacations are a risk, and you don’t want to make plans with friends because you feel bad when you can’t keep them.”

2. “I felt guilty because I was able to do something this morning, or yesterday, or last week, so surely I’m well enough to do it now, if I really wanted to. ‘Mind over matter’ comes with consequences. Pushing through the pain and fatigue only results in more pain and fatigue!”

3. “I’ll be exhausted even if I have done nothing but sleep or sit on the couch. I have to talk myself through taking a shower because it is so exhausting.”

4. “I’m in college and trying to find the balance between caring for my health and doing well in school is hard most of the time. It’s a constant struggle between being a ‘good student’ and not sending myself into a flare. Sometimes I feel like I can’t keep up with everyone else in my degree program; it’s like trying to run a marathon with weights strapped to your feet.”

5. “It takes so much strength and courage to leave the house. And when we do we put on a brave smile and pretend everything is OK.”

6. “I’m not able to enjoy intimate time with my significant other. I’m too exhausted, hurt, or I just physically aren’t able to.”

7. “Brain fog so bad that I can’t figure out how I got from point A to point B when driving somewhere because I have no recollection. Or brain fog causes me to do things like putting my makeup away… in the refrigerator.”

8. “I just slept until 1 in the afternoon and now we have to reschedule tuxedo shopping for my groom. Things like this happen so often. I can’t sleep or stay asleep and then end up sleeping during hours that businesses are run so I can’t get anything done.”

9. “Exhausting doctor visits have no end because… chronic! Closely related is the cringe quality of people saying, “You will feel better!”

10. “Finding a way of sitting comfortably and alleviating pain slightly, even if it’s for a few moments, is like all our Christmases have come at once. People assume we are ill because we ‘don’t get enough rest,’ yet finding comfort while sitting or standing is usually always painful.”

11. “I’m not able to just eat whatever I want. I constantly have to think about the consequences of eating something and whether or not I wanna deal with them, whereas my fiancé can just wolf down a cheeseburger or donut and not have to think twice about it.”

12. “There can be a sudden onset of symptoms. One day you can be just fine and feel like finally your life is normal, the next all you want to do is stay in bed all day and sleep.”

13. “When going to Costco is exciting because you haven’t left the house all week and you’ve been looking forward to it the way a ‘normal’ person feels excited about a concert or a trip to the beach.”

14. “When you have a new pain somewhere, like my index finger on each hand, or my hip all of a sudden hurting, or my neck throbbing and burning, and you are not sure if it’s related to fibro or osteoarthrtis, or something else is wrong. It can also be hard to tell which illness is flaring up sometimes or if it’s a combo of everything.”

15. “Doctors! We understand doctors, the good, the bad, and the ugly, like no one else… Sometimes it helps, sometimes we’re left way worse than when we started. Often we know more about our conditions, medications, and how they affect us than doctors will ever give us credit for. Then when you find those medical professionals who really hear you… that’s the best feeling.”

16. “The anxiety that comes with calling off work! I worked as a mental health therapist and sometimes worked up to 60 hours a week, so when I would need to call off work for my chronic illness I felt it was almost impossible to relax because of the intense anxiety I felt calling off.”

17. “I get excited finding someone else in real life who has the same illness as me so they ‘get it!’ You don’t have to go into detail talking about common situations.”

18. “The moment I realized I was no longer able to do things I used to do. Having to adjust to a ‘new normal’ which is anything but.”

19. “When arriving at the pharmacy, they greet me by name. Same goes for when I call the pharmacy, they recognize my voice and greet me as if I am family.”

20.Buying a whole new wardrobe because I now need clothes that are easier to put on and comfortable to wear. Planning what to wear in the morning takes much longer because I now have to consider my pain level and body stiffness. I have ulcerative colitis, so I also have to think about the potential for my belly to bloat.”

21. “Small accomplishments can be a huge thing on a bad pain day! E.g. getting dressed, having a shower, making something to eat, etc.”

Brunette young woman walking the forest road

When 'Normal' Life With Your Chronic Disease Keeps Changing

I’m not sure I exactly remember when it happened, but I know it was sudden. I was having trouble running, then walking. Soon, I couldn’t sit for more than a few minutes at a time without pain radiating up my back. I thought I had an injury – I lived an active lifestyle, after all. Surely I just pulled something or had a small stress fracture. It would get better.

But it didn’t.

Weeks turned into months turned into years. Along with the pain in my joints came rashes and overwhelming fatigue. I couldn’t form a fist anymore because my fingers were so stiff and swollen. I’d urinate blood every time I went to the bathroom. I started chemotherapy and it helped a bit, but even with such a potent medication I still didn’t feel the way I used to. After a few rounds of it, I realized that I probably never would.

Being diagnosed with a chronic disease wasn’t in my five year plan, to say the least. Neither was chemotherapy, or getting a port-a-cath placed, or seeing the doctor at least dozen times a month. I’ve had to adjust my diet around my faltering kidneys and schedule plans around the rashes on my face. “Normal” for me now includes frequent ER visits and struggling to breathe just walking to the mailbox. It’s pain in my joints, sometimes so severe I can’t get out of bed. It’s taking a handful of pills twice a day and taking a few days off a month to go to the hospital for infusions. It’s not what I planned, or what I wanted, but with time I found a strange comfort to my routine. As long as things stayed relatively predictable, my diagnosis and new way of life were surprisingly easy to accept and adjust to.

But chronic disease isn’t exactly predictable, is it?

A few months ago, I started coughing. I thought I had a bad cold, and because I’m immunosuppressed I knew it would take awhile to get over it. I monitored my temperature for any fevers, bought some cough drops, and tried my best to push through it.

Weeks went by and seasons changed, but the cough persisted. Soon, months had passed with no improvement. With the cough came shortness of breath, and before long I was coughing so violently that I was vomiting and spitting up blood. I couldn’t walk up the stairs anymore without having to stop and catch my breath, and started to realize that my physical ability was becoming increasingly limited. I tried all of the normal cough remedies, but none of them were helping. After a few visits to the pulmonologist, it was determined that my disease was attacking my lungs. The cough, the shortness of breath, and my limited physical ability weren’t going to improve. This was my new normal.

Years of treatments and therapies, all of the time lost in the hospital or laid up in bed after chemotherapy, all of the pain and all of the things I’d put on hold to treat my disease – it simply wasn’t enough. The disease is still there, and it’s going to continue taking and taking and taking until there’s nothing left.

Now, I’m reminded of that with every breath I take.

I’d be lying if I said I’ve always handled this well, or that I haven’t laid in bed at night bartering with my white blood cells to just, you know. Chill. There are days I’ve felt like I have to go explore the world to “make up for lost time,” and days when I wonder if it’s even worth it to get out of bed at all. Some days are better than others not just when it comes to the physical symptoms of my disease, but how I am mentally and emotionally coping with them.

The hardest pill I’ve had to swallow since being diagnosed with a chronic disease (and believe me, I’ve swallowed a bunch) was learning that with chronic disease, “normal” doesn’t exist. You’re constantly adjusting, whether you realize it or not, to your symptoms and limitations. Adjusting is difficult, and even after years of practice I haven’t found that it’s gotten too much easier. It’s going to take time, maybe a lot of it, and that’s OK. The point is to, despite how impossible it might seem, keep putting one foot in front of the other. Keep track of your little victories and never forget how incredible you are for just taking your medication, for eating breakfast, for walking down the stairs.

“Normal” is going to continue to change but as long as you keep going, you keep fighting, your disease doesn’t win – no matter what your blood tests or CT scans might say. As long as fighting is part of your normal routine, you’re a champion.

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