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

467
467

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

467
467

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

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

5k
5k

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. 

5k
5k
JOIN THE CONVERSATION

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

977
977

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.”

977
977
TOPICS
, Listicle
JOIN THE CONVERSATION

When 'Normal' Life With Your Chronic Disease Keeps Changing

118
118

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.

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

118
118
TOPICS
JOIN THE CONVERSATION

When My Stepson's Writing Project Revealed How He Sees My Illness

29
29

The concern and worry about how a child will interpret and understand a chronic illness of a parent figure can be troubling. Take it from me, a stepmom of an 8-year-old kiddo who knew me when I was well and knows me now that I am chronically ill.

There we were, sitting in the parent-teacher conference when the teacher said our child had written a family book. In the book he described his mom, his dad, his stepmom (me) and himself. Since becoming ill I have worried that he would look at me as not as “fun” as before or just someone who “holds us back.” He knows I am sick and he recognizes my illness and when I’m not feeling well. When he really wants me to do something he thinks ahead of time about how he can make it easier for me. In the past he has told me that he wants me to go on a hike with him on our property and that he has already gone up the hill and found the perfect rock where I can rest. He looks next to me now when I’m sitting on the couch to make sure I always have water. He especially steps up if his dad is out of the room.

Yet I still worry sometimes. I never want to embarrass him or be the stepmom “who uses oxygen.” To be honest I think when I use oxygen it worries him a little bit more than anything else. If he notices that I’m using oxygen he makes a point to come give me a hug and tell me he loves me.

I tensed when the teacher started reading from his book. He wrote, “Amy is the stepmom of the family. She is 31 years old. She likes to sleep. She is important because she loves us so much and she makes us food and she makes us donuts.” I was relieved because he also wrote that his mom (who is perfectly healthy) likes to sleep, too. It’s just some weird adult thing. I’m not a mutant. He doesn’t think of me as only being sick. He remembers the other fun things about me, too. He knows I bake and make yummy foods and snacks. Most of all, he knows I make donuts for him and I love him.

Maybe I have to rest a little bit more and drink more water, but he just thinks of it as an “Amy thing.” When I pass out in front of his friends he says, “Oh yeah, she just does that sometimes.” He knows that Aunt J doesn’t play Monopoly and that’s just an Aunt J thing. He doesn’t hold it against her. It’s just another thing to remember about her.

I’m not weird. I’m not an embarrassment. I’m the maker of donuts and everyone knows donuts are a love language.

Follow this journey on Smiles in the Trials.

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

Thinkstock photo by dolgachov

29
29
TOPICS
JOIN THE CONVERSATION

4 Gifts Chronic Illness Has Given Me

42
42

It’s no secret that being sick really sucks. Losing friends, not being able to work and spending all your time at the doctor’s office sucks. But sometimes you have to go through hell to become who you are supposed to be.

Over the past year, I have discovered so many things I never could have learned in a classroom or on a job. Sometimes I feel as if I’ve already lived a whole lifetime and these other 20-somethings running around are just youngins who don’t know nothin’ yet. I’ve discovered that pain and struggling can teach you amazing things if you are willing to learn.

Here are four gifts I have received as a result of my chronic illness:

1. The Gift of Proactivity

Before I became really ill, my social anxiety was so bad that I was terrified of standing up for myself in almost every context. I was so afraid of “rocking the boat” that I became a passive wallflower who avoided confrontation like it was the plague. I wanted people to like me so badly that I was willing to stuff my own wants and needs under a mattress to rot.

But as I became sicker, I was forced to speak up for myself in all kinds of situations because my health depended on it. After a while, I didn’t mind being “that girl” who made a scene negotiating with the waitress about finding a dish that would meet my dietary restrictions. I no longer hesitated to ask friends and relatives if they could unplug their smelly Glade candles while I was over for dinner, because if they weren’t willing to make small adjustments for me then I couldn’t risk being there. (Shout-out to anyone who’s ever removed a Glade plug-in or Scentsy candle for me – you know who you are. Thank you!) It turns out most people are happy to make little adjustments to help a sick person out – who would have known? And now that I have a more courageous heart, I don’t mind asking for help one bit.

2. The Gift of a Clean Slate

When you experience a life-changing illness, everything you know is turned upside down. The pieces of your old life lie scattered across the floor and you have a blank playing board staring back at you…so what do you make of it?

Some people lose everything in a flash; a car accident leaves a professional athlete paralyzed and her whole identity is wiped away in an instant. Others, like me, lose little pieces of themselves over months, until one day we look into a mirror and realize we don’t recognize the face staring back at us. When you lose your independence, your hobbies and your job, who are you now, without any of the labels you took so long to earn? I had so many labels: “student,” “musician,” “rock climbing instructor,” “girlfriend” – and losing them was the best worst thing that ever happened to me.

Losing things sucks, but that loss also makes room for you to love new things. Once I couldn’t eat any of my old favorite foods, I learned to love a new set of foods (which was a huge deal for me, ’cause I’m a picky girl). For instance, now I love ginger and all things in the Asian aisle of the grocery store! But I never would have tried anything new if nothing was taken away from me in the first place. Another new love I discovered was a love for design, for writing and creating things. I found these passions only after I had lost others. Apparently I need to be dragged behind a horse before I’ll go out and try something new, but if that’s what it takes, then so be it!

3. The Gift of Real Relationships

Back when I was a healthy(ish) person, I could get away with relating to friends on just a few levels: drinking, boy-talk and general life drama. I would date people with whom I had very little in common, knowing that the relationship was shallow, but not being bothered to change a thing. I could float along through college, not caring which of my relationships were genuine and which were fake. But being sick turned that way of thinking upside down. My illness, my life restrictions and my lack of energy acted as a sieve that very quickly filtered out all of the friends and acquaintances with whom the relationship was not built on true love and caring.

I learned that when things get difficult and suddenly it is not super-convenient for someone to relate to you, a lot of people fall away. That doesn’t make them bad people, it just makes them not the right people for me. I am guessing most people don’t figure out who really cares about them until they hit a mid-life crisis or develop some life-altering disease later on in life, but I had the benefit of watching my weak connections fall away in my early 20s. Now I know that any friends who have stuck around through the hard times are the ones I really want to spend my “spoons” on.

4. The Gift of Gratitude

Yes, this is such a cliché, but it’s true: you really don’t appreciate things until you lose them. For example, you don’t realize how much you adore and depend on your smartphone until it breaks and you have to go without it for a week. You also don’t think about how amazing your body is until it starts breaking down on you. You aren’t cognizant of your every heartbeat until you have a heart condition and each beat is no longer a guarantee.

I used to take things like my eyesight, my balance and my breathing for granted. But now I am truly thankful for every heartbeat. I used to get bored so easily, and I was always looking for the next thrill in life. But now I see how beautiful life really is, even if I have to watch it all through my bedroom window. Now I cry a tear of happiness when I can step outside and bask in the warm sun for an hour. When you live in a dark cave, every little candle is like a blazing fire and you are that much more grateful for it.

In closing: I didn’t ask for these gifts, but I’m glad I got them anyway. They came wrapped in both joy and sorrow with a big, bright tag that reads: “No returns, refunds or exchanges. And you’re welcome.”

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

42
42
TOPICS
, Contributor list
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.