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All facts are from Dysautonomia International.

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8 Things Healthy People Need To Stop Saying

Dear Healthy People,

There are a lot of articles out there about what you should stop saying to sick people. Here are some things healthy people need to think about before they say because they are hurtful. Please stop saying and doing the following. You are being insensitive and ignorant.

I try so hard to be empathetic and tactful, but I am so sick of these people not even attempting to be tactful or empathetic to me in any way so, this time, the gloves are coming off. I’m sick of your crap and am calling you out.

1. Sorry But I ___________________

  • Was in pain
  • Was sick
  • Hadn’t slept well

Using pain, illness, or lack of sleep as an excuse for bad behavior is incredibly irritating.

I recently had someone go off on me in anger and blamed it on not sleeping well… for two nights. At the time, I had slept an average of 1 hour a night for the last 30 days. It was insulting for someone to treat me poorly and use not sleeping well for two nights as an excuse for their behavior when even after a month without sleep I was still nice to her.

When you have a chronic illness you don’t get to use pain, illness, or lack of sleep as an excuse to be rude to people. If you did you would lose every person in your life within a week. I realize that being sick or sleep deprived for many people is an uncommon and terrible thing to deal with. But it feels so terrible that healthy people get to use it as an excuse when I strive to be a good, nice person despite dealing with dislocated joints, not sleeping for weeks at a time, and all the crap that comes along with having a chronic illness.

2. I Know How You Feel
When healthy people say this to me I seriously want to scream. First of all, being sick for a long time is nothing like having an injury, being acutely sick, or not sleeping well a few nights. Pretending it is the same minimizes the biggest struggle of my life, a struggle that is hard to clear my mind of for a single minute because my pain is there to remind me constantly. Unless you have had to grieve for the loss of your old life when you were healthy you should not say this to someone with a chronic illness.

Secondly, comparing someone’s illness to your situation is messed up. Why do you have to make the comparisons? Why can’t you empathize instead of minimizing my problems? Plus, let’s be honest. If you want to play the comparison game you will lose. You haven’t slept well for a few days? Try months. Your shoulder is sore? Try dislocating multiple joints a week. You have had an ear infection for a week? Try having a sinus infection for 6 months or a debilitating illness for almost 8 years.

I can feel sympathetic to your pain and illness, but if you compare it to mine or minimize my illness my ability to empathize with you will go out the window.

Parents, you not sleeping because you have a child is not the same thing as dealing with a chronic illness. You chose to have children. I didn’t choose this. Being tired is not the same as feeling the crushing fatigue of a chronic illness. So no, you can know tired and not have an infant. Stop minimizing everyone else’s experiences because you have a kid.

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3. I Have Been Sick For SO Long
Being sick sucks. Being sick for a while really sucks. I get it; I really do. This is not an “other people have it worse thing,” you are allowed to have a hard time. I can support you through that. It is a problem when you say these things to me or other chronically ill people without considering how I feel. Hearing you say that having a cold for a couple weeks as “so long” feels like you are ignoring the fact that that happened to me once, but the difference is my illness never went away.

I have been sick for 7 years, 8 months, and 6 days. I have not gone more than 3 or 4 hours (awake) that entire time without my body reminding me that I am sick, that I am not normal. When you forget that, when you ignore that, it is a slap in the face.

I will support you for the entire time you are sick but please do not forget the hard things I am dealing with. Don’t minimize what I am going through because you are having a hard time and I will not do the same.

4. You Are Lucky
You are lucky you get to take “fun drugs.”
I have excruciating pain nearly every minute of every day. The medicines I take are not to get high or have fun. They hardly take the edge off. I would never take them again if I could survive the pain. Being in so much pain you have to take medicine is absolutely not lucky.

You are lucky you don’t have to work/ go to school.
I was on track to go to medical school when I got sick. I am not lazy or avoiding work. I would give anything to be able to go to school and work. I hate feeling trapped into doing less. It isn’t luck; this isn’t a vacation.

You are lucky you can sleep in.
If I don’t sleep more I can function even less than usual. I am not sleeping in because I feel like it, am lazy, or am a bit tired. I sleep in because I cannot stand if I sleep less than 9 hours. My pain is unimaginable if I don’t get enough sleep. I sleep out of necessity, not pleasure.

The list goes on and on. How inconsiderate are you that you can’t see that having a chronic illness is not in any way lucky?

5. I Couldn’t Do It, I Hate _______

  • Taking medicine
  • Shots
  • Going to the doctor
  • Hospitals

I hate them all too, but when you have a severe chronic illness you no longer have a choice. When people say this I am not sure how to respond. Are you implying I do like these things? Do you think these things are optional? I have to do things I hate all the time to survive.

If you were chronically ill you would have to do all those things too. You do what you have to to survive. What you want, what you enjoy no longer matters when you are fighting every day to survive.

6. You Can Do Anything! Mind Over Matter!
I know you are trying to be inspirational but this is really insulting to disabled people. No matter what I do I will never be able to climb a mountain, become a surgeon, or run a marathon. Being literally unconscious puts a damper on accomplishing all your dreams. And that is what happens when I try “mind over matter”- I faint.

So no, don’t spew that crap to me. I am limited by my condition. Just because you are able bodied do not tell us we all of are able to accomplish anything we put our mind to.

7. I Never Get Sick
People say this with pride to me all the time. The only reason I am sick and you aren’t is chance alone. You are not better than me because you happen to be healthy.

When you say this with pride you make it obvious you think you are better than me because you are healthy. It makes it obvious you think I have control over the fact that I am sick.

8. At Least You Are Used To It
Discounting what I am going through because I go through it constantly is also insulting. My condition causes a different pain every day. It doesn’t get less shitty because I have had it for so long. In fact, it gets harder. It is exhausting and soul crushing to deal with pain and illness this long. So don’t dismiss me because I have had these problems for a while. It still hurts and it is still hard no matter how long it has been.

10 Tips For Going To Concerts With POTS

Up until recently I had given up going to concerts. It just seemed impossible with POTS. A lot of times we are required to give up activities we love for our condition. I think it is important to still have a life- to have things to live for and look forward to. So here are some tips to make concerts a bit easier in the hope concerts will not be added to the list of things we cannot do because of our illness.

1. Call Ahead

     The venue makes a large difference in whether I can attend a concert or not. I have had venues, such as Red Rocks in Colorado, make no effort to help accommodate me. In fact, they won’t even call me back about accommodations. Therefore, I recommend contacting someone at the venue prior to buying tickets. Some good questions to ask are:

  • Is it wheelchair friendly? (Although it is illegal some are not)
  • Are there places for wheelchairs where you can see?
  • Will they let you in early to get a seat where you can see?
  • Can you provide a seat for whoever goes to the concert with me? It will be basically impossible to communicate otherwise (and awkward).
  • Does the venue get extremely hot?

2. Wheelchairs Help

     Having an invisible illness basically guarantees people will not go out of their way to accommodate you. Using a wheelchair means that your illness becomes visible and it guarantees a spot to sit throughout the night.

3. Load Up On Salt & Water

     I drink water and load up on salt even more than usual before events that cost a lot of spoons. Talk to your doctor about safe amounts of either.

4. Frequent Breaks If You Get Overstimulated

     A lot of sound and noise can lead to me feeling overstimulated and foggy. Taking frequent breaks to step outside for fresh air or to the bathroom keeps the overstimulation from bothering me as much.

5. Bring Earplugs

     Some shows are extremely loud and can set off headaches or overstimulation. Having earplugs in case you need them is a good idea.

6. Wear layers

     If you have heat or cold intolerance wearing light layers keeps you from having as many problems with temperature. Commonly, these venues get very warm with body heat so the lighter the layers the better.

7. Small Shows And Venues Are Better

     Small shows and venues tend to be less warm, less loud, and altogether easier to navigate. If you aren’t too picky about what concert you want to see I would definitely recommend finding a smaller show.

8. Wear Compression

     Wearing compression helps me a lot during any event that takes a lot of effort. I find that both tights and abdominal binders are worth the extra heat because they keep the blood pooling at bay.

9. Don’t Go If You Have Something The Next Day

     Even with all of these changes going to a concert will likely wipe you out and cost a lot of spoons. I try to only attend if I do not have somewhere important to be or do the next few days.

10. Don’t Feel Bad About Asking For Accommodations

     Sometimes I find it difficult to ask for help or feel like I am putting people out. It helps to remember that having a chronic illness isn’t your fault and you deserve to live your life as much as everyone else. Making accommodations is their job and doesn’t take much effort from the staff at the venue. In fact, I have heard that it is one of the easier parts of their job (do you know how many people throw up of concerts?).

Defining Yourself By Your Disability and Seeing Yourself As Sick

Defining Yourself As Your Disability

 This article makes a really good point I have  been thinking of lately. People should not demand someone with a disability to look at themselves in whatever way you see fit. Don’t complain that they talk about their illness too much. My disability does not define me, but it has shaped who I am. I have to deal with it every single day; it is a part of my life and I will talk about it if I want to.

Firstly, telling people to not “define themselves by their disability” is insulting because it implies that is how they do define themselves. For me and for most people this isn’t true.

Secondly, telling someone to not define themselves by their disability or to talk about their disability less is just ignorant. The people you see every day, the job you go to every single day- those things shape who you are. So who are you to say that a something I deal with every minute of every day should not influence my life or how I see myself?  When you hate your job you are probably going to talk about it a lot. In no way does that mean you are defined by that feeling, your crappy job, or how you deal with it. Talking about something that affects you so profoundly absolutely does not mean you are “defined” by it.

Seeing Yourself As Sick

While at the Dysautonomia International Conference a Dr. Paola Sandroni, a neurologist and expert in POTS, claimed that IV fluids should not be given to patients because it makes them think of themselves as sick*. Well, my question to Dr. Sandroni: how is wanting IV fluids to feel less sick going to make me suddenly see myself as more sick?! IV fluids make me feel less sick and more normal. Do you want to know what does make me think of myself as sick? Fainting. Pain. Brain fog. Dizziness. Nausea. Severe tachycardia. Vomiting. Chest pain. Our symptoms make us feel sick and think of ourselves as sick; treatments make us feel better and more normal. Stop demonizing our attempts to feel better.

I have also heard “friends,” family, and medical professionals go even as far as saying that you would feel better if you didn’t focus so much on being sick. Just stop talking about it and it will go away. In some cases, I am sure this is true, especially with patients who have both anxiety and POTS. Most of us do not. Just as many others, I don’t see myself as weak and sick. That is not why I talk about my illness. In fact, I see myself as strong, and a fighter for what I go through every day and keep on going. I recognize how hard it was to ask my friends and family for support. I recognize that I am doing everything I can to raise awareness to hopefully limit both the suffering of others and myself. If I need support to deal with this really tough thing then you can bet I will talk about it, and I’m stronger for that fact. You can’t silence me by demonizing the way I get support and deal with my illness.

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*All the other doctors at the Dysautonomia International Conference were wonderful and much more understanding of patient’s struggles. This was just one negative experience of an overall wonderful weekend.

What Is A Poor Man’s Tilt Table Test?

7C11274/3A11275Tilt table tests (TTT) are uncomfortable, expensive, and time-consuming. It is agreed that TTT should be the standard for POTS diagnosis, but wouldn’t it be great if we had a way to look for POTS without going through the entire test? Well, we can. The poor man’s tilt table test as it is called is a check at your heart rate and blood pressure throughout laying, sitting, and standing.

The poor man’s tilt table test is not as reliable and should not be used by laypeople for diagnosis. However, it is a helpful tool to see if you should see a doctor about an official TTT or see a POTS specialist.

If you do not have a blood pressure cuff you can still record your pulse as that is helpful to know as well.

Materials

Heart Rate Monitor (can be on your smartphone)
Blood Pressure Cuff
Another Person

Steps

1. Find a clear space where you can lay, sit, and stand comfortably.
2. Lay down. You may have to lay for up to 10 minutes for your pulse to slow before measuring.
3. Check your heart rate and record. Repeat.
4. Check blood pressure and record. Repeat.
5. Sit up and wait a couple minutes
6. Check pulse and record
7. Check blood pressure and record. Repeat.
8. Stand
9. Check pulse and record (check multiple times over the time you can safely stand). Repeat.
10. Check blood pressure and record. Repeat.

Position Heart Rate Blood Pressure Symptoms & Notes
Laying 1
Laying 2
Sitting 1
Sitting 2
Standing 1
Standing 2

Shortcomings

Doing a formal TTT means that you have medical professionals around to help if something goes wrong. Doing this version means that you may faint and hurt yourself. If you are worried have someone to help keep you safe or wait for an official TTT.

TTT tilt you slowly in a way in which your leg muscles are not engaged. Leg manoeuvres can help with POTS symptoms and standing by yourself means that you may use these manoeuvres and skew the results. If you have POTS symptoms you may have adopted this technique without even realising.

9 Common POTS Myths

There are a lot of common misconceptions about POTS. There are ones I get from doctors, nurses, family, friends, and even other POTS patients. Remember that most of our POTS symptoms are different and that the same thing doesn’t work for everyone!

1. POTS Is NOT Anxiety
I don’t care how much POTS looks like anxiety- it isn’t. The increased heart rate, palpitations, and shortness of breath in POTS are caused by the autonomic nervous system. Medicines for anxiety and medicines for POTS do not work the same and do not necessarily alleviate POTS symptoms.

Anxiety can happen as a result of POTS or alongside POTS but I cannot stress enough that they are not the same thing. Strange scary symptoms can make patients nervous and the life change of living with a chronic illness is enough to make anyone anxious, but the underlying condition is not caused by anxiety.

2. POTS Symptoms Disappear When You Lay Down
I have had multiple doctors ask why I don’t just lay down to fix my symptoms. Let’s get this straight- POTS symptoms are exacerbated by standing but do not disappear when I lay down.

Many people with POTS feel terrible laying down as well. Unfortunately, POTS symptoms can reach you at any angle. Just last week my tachycardia was 130 bpm while laying down and relaxing for four hours. The chest pain and brain fog did not go away the entire time. So while standing makes things worse, lying is not a magic cure-all for our symptoms.

I have talked to very few people who feel 100% better once horizontal but it is not the average POTS patient.

3. Exercise Will Cure POTS
Some people with POTS have had this experience and I am thrilled for them. However, for many of us exercise is not a cure-all. I hear on support groups POTS patients who have been helped with exercise be judgemental and condescending towards those who have not been helped. Additionally, friends and family can claim you aren’t trying hard enough if exercise does not cure you. Please stop people!

Exercise helps POTS but for people like me it is not a cure. I have tried swimming, biking, rowing, and walking daily for months at a time. Exercise helped my symptoms but my POTS is still severe and unrelenting.

Just because you are able to exercise does not mean you get to judge people who can’t (or are not having the same results. Associated conditions that happen together with POTS such as Ehler’s Danlos and neuropathy can make exercise extremely painful and difficult.

 

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Trying to work out with EDS is a lot like this.

 

4. Most People Grows Out Of POTS
I was diagnosed with POTS at 18 and being between a teen and adult made things complicated. Pediatricians claim that many people who get POTS in their teens outgrow POTS; that doesn’t happen as often in adults.

Every doctor I saw that first year after my diagnosis told me I would grow out of POTS. It is 7 years later and my POTS is worse than ever. I understand doctors wanting to give their patients hope but that hope kept me from coping with a major life change. Instead of coming to terms with having a chronic illness I only thought of POTS as temporary.

This negative experience is not unique to me. A lot of people who are diagnosed with POTS in their teens will never grow out of it. A lot of this has to do with associated conditions; for example, people with Ehler’s Danlos rarely grow out of POTS. Telling all teens POTS is temporary, when many cases are not, is not helping them cope with their illness.

5. POTS Is No Big Deal
POTS can be an annoyance or it can be severely debilitating. This variance is part of why POTS is so hard to understand. Often people who have heard of POTS have a friend mildly affected and cannot understand more severe cases.

“Claire never cancelled this much on me and she has POTS too. You obviously are just making excuses again.”

 

Don’t be confused by people with less severe cases; POTS is often far more than an inconvenience. Experts are clear. POTS can be serious and hugely lower patient’s quality of life.

flake
Somehow being too sick to go out makes me a flake and is grounds to yell at me. I did not choose this.

Comparisons in the diminished quality of life in POTS have been described as equal to congestive heart failure, chronic obstructive pulmonary disease, and end stage kidney failure patients on dialysis. Some people with POTS are absolutely bedridden and unable to care for themselves. About two-thirds of POTS patients cannot work full-time and 98% of POTS patients cannot socialize as much as they would like.

POTS can be a big deal.

6. POTS Has Nothing To Do With Pain
POTS is not commonly associated with pain, but often causes a lot of patients pain. Chest pain is exceptionally common with POTS and is sometimes severe (I have had POTS chest pain hurt as much as a pulmonary embolism). POTS is also associated with migraines, neuropathic pain, and joint pain.

Many conditions associated with POTS cause pain as well. Ehler’s Danlos causes an extraordinary amount of pain and autoimmune conditions may cause pain as well.

7. Lifestyle Changes Can Cure Everyone
There are some naive people who believe that no POTS is so severe that it needs medication. I recognize why lifestyle changes should be considered first. For many POTS cases more salt, water, and exercise are all that is needed to control symptoms. However, there are some people who still cannot function with these changes.

No matter how much I exercise, drink water, wear compression, tilt my bed, and eat salt I still faint without a beta blocker. I still do all those things but lifestyle changes alone aren’t always enough in so many cases.

8. Blood Pressure Changes Have To Be Involved For Diagnoses
The diagnostic criteria for POTS are about pulse, not blood pressure. While some changes in blood pressure may occur during a tilt table test or upon standing POTS is not the same as orthostatic hypotension. Hyperadrenergic POTS can affect blood pressure as well, but does not have to be present for diagnosis.

9. POTS is Not Rare
1-3 million Americans have POTS and about 1% of teens have POTS. It is more common than both ALS and Parkinson’s Disease, but awareness is a huge problem. As a result, it doesn’t seem like there are that many of us or that POTS is worth researching. Awareness will help fix this.

For how common POTS is there is some exceptionally bad information out there. As a result, people are getting the wrong ideas about POTS. Dealing with misconceptions constantly becomes frustrating. What misconception are you sick of correcting?

Visibility and Invisible Illness: 5 Struggles Unique to Having an Invisible Illness

Note: To be clear I am not saying that invisible illnesses are more difficult than visible illnesses. I am not comparing or ranking struggles, just pointing out differences so we can better understand each other better. Each brings its own specific problems, and both are incredibly difficult to deal with.

It has been on my mind lately how different having a chronic illness can be for each person. Recently, I was hanging out with friends when one friend asked me how I had been feeling. I explained that I was better, but not great (my go-to response because what else do you say). Then, someone I considered a friend said “Is there anything you don’t have?”

I was taken aback- why would you say something like that?! Well, his explanation really got me thinking. He has a chronic skin condition that has had some pretty bad flares. He explained that he hates when people pity him and he prefers to crack jokes instead. I honestly didn’t know what to do with that response. He gets pitied so often he thought an insensitive joke would be better? I rarely get pity and that hasn’t been my experience at all. I just could not relate.

So what is so different in our experience? How can we relate so little to each other? Visibility.

I tend to be in casts, braces, on crutches, or in a wheelchair more often than the average person. At these times my illness becomes visible. The majority of people of us with POTS usually deal with the struggles of an invisible illness. Invisible illness is when someone has a chronic illness, but you can’t tell just from glancing at them. Occasionally, we are visibly sick because of blatant POTS symptoms, PIC lines, mobility devices, or feeding tubes. However, the majority of the time I don’t look obviously sick. This is a blessing and a curse. I can pass for healthy and avoid constant glances and invasive questions which obviously can be nice, but here are some of the terrible parts as well:

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1. Being Told It Is All In Your Head

I was told for years that my symptoms are all in my head. It is harder for doctor’s to diagnose problems you can’t see. I’ve been told by doctors that I am hypochondriac, that I have a low pain tolerance, that I have Munchausen’s, that I’m overreacting, that I’m anxious, depressed, and anorexic. The worst part? After long enough my family, friends, and even I started to believe them. After hundreds of tests it isn’t hard to believe that maybe you’re just crazy.

Emotional stress isn’t the only danger of having no outward symptoms. I nearly died because no one believed my pain when I had a blood clot in my chest. I was told I had low pain tolerance, was a drug addict, and just had a “stomach bug.” I am constantly having to be my own advocate to ignorant health professionals who don’t believe me and it is thoroughly exhausting.

crazy

2. Diagnosis Can Take Longer

When you only have symptoms and not obvious signs of illness getting diagnosed can be more difficult. With a broken bone they can take an X-ray and tell exactly what is wrong. When you have generalized symptoms that sometimes only be seen in one situation (i.e. Tilt Table Tests) it can be nearly impossible to diagnose and doctors jump to the easy solution when they don’t know the answer- dump you with the excuse that it is a Psychology issue.

3. Difficult For Friends and Family To Understand

Friends and family don’t understand why you can’t do the things you used to because we look the exact same. It is more difficult to understand why your teenager suddenly can’t help with chores when they look the exact same. Friends don’t understand why you are suddenly cancelling on them when you don’t look sick.

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4. Judgement From Strangers

When strangers see people with invisible illnesses in a wheelchair or using handicap bathrooms, parking, etc. they jump to judgement. I get rude comments, and other’s with invisible illnesses regularly get rude notes. I get the comment “but you don’t look sick” and am dismissed and chastised. I nearly never get sympathy. If you need more convincing, these notes are really common to receive on our cars with invisible illnesses:

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Could you really be anymore ignorant and insensitive?

5. Judgement From Those With Visible Illnesses

The strange things about it is that there are a ton of us with invisible illnesses, but we are misunderstood even by others with chronic illnesses. This week someone called attention to a post on a Facebook group called Disabled Dating that read “If you don’t look like you have a disability you will be booted from the group.” So many disabilities aren’t immediately obvious! How do you even say something like that?

This is a great website for invisible illnesses.

Visible Illness Problems

I have much more experience with my illness being invisible, but my experience when my illness is visible has been completely different. People with visible illnesses do tend to get more sympathy, but there are also terrible downsides I would never wish on anyone. People ask invasive questions about their condition, and they get a ridiculous amount of pity. We could all use some empathy, but pity takes it a step too far. People with visible illnesses are talked down to in an incredibly dehumanizing way. People are constantly saying things like “you’re so brave” or “you poor thing.” People also expect some visible illnesses to be short-term and constantly ask when people will feel better, be getting out of a cast, stop needing a port, or stop needing a feeding tube. Constantly explaining your problems are chronic is also frustrating.

Our experiences with visible vs. invisible illness are certainly different in many ways. One thing in common is people have no idea how to talk to chronically ill people. We should at least learn to relate to and talk to each other.

Do you have a visible illness? Would you like to share your experience on how the challenges differ and are the same? Submit a guest blog post! Email me

7 Things TV and Movies Get Wrong About Chronic Illness

Chronic illness is not regularly represented in movies and TV shows. Only recently have movies and TV shows about chronic illness been made popular. For example, The Fault in Our Stars, a love story about two teenagers with cancer was wildly popular with nearly $125,000 in box office revenue. Any representation of chronic illness is a step in the right direction, as an estimated half of all people have a chronic illness. The current representation of chronic illness often perpetuates common misconceptions about dealing with chronic illness.

Seven Things the Movies Get Wrong About Chronic Illness
Hard Work Can Cure Everything
We often see people who are paralyzed and injured struggling at physical therapy appointments. These struggles are intense and common in chronic illness, but one aspect commonly depicted of this struggle is not. Many of the chronically ill characters are cured simply by this hard work. There are a few scenes of them struggling and suddenly are cured of all symptoms. Many illnesses, like Type I Diabetes, won’t be cured with hard work. Symptoms may be kept at bay through activity, but rarely are their illnesses entirely cured.

Diagnosis is Fast
In movies or TV shows, we often see someone get obviously and visibly ill. The character suddenly faints or has a seizure then in the very next scene their illness is explained. In House, MD the most complicated cases the writers can think up are often solved within the time of a week on the show. In the real world, a lot of people do not immediately receive a diagnosis, especially those with rare or newly recognized illnesses. In rare illnesses, it may take decades to be correctly diagnosed. The process is exhausting and representing this problem in diagnosis is crucial to the understanding of what the chronically ill go through.

All Illness is Visible
The chronically ill protagonist is always obviously sick. They are in a wheelchair, on oxygen, or have lost all their hair from chemotherapy. Outside the movies, not everyone who looks healthy is actually healthy. This assumption is problematic to those of us with chronic illness. People assume you aren’t actually sick because every representation of chronic illness they have seen has been obvious and visible. In many illnesses, such as Fibromyalgia and Dysautonomia, patients may look healthy to outsiders.

Chronic Illness is Temporary
Occasionally movies and TV shows claim a character has a chronic illness, but the illness is not actually depicted as chronic. Characters are all either cured or die. The doctors, tests, pain, and medication is all shown as temporary. Audiences don’t see the daily permanent struggle that is faced by sufferers of chronic illness.

It Is All Cancer and Injury
There are so many chronic illnesses that people deal with, but usually only cancer and illness caused by injury are represented. Cancer and injury are easy fall-backs because they are easily understood, but there is no excuse for this lack of creativity and underrepresentation. There are plenty of chronic illnesses that make for compelling characters and stories.

Skip the Coping
Coping with a chronic illness is a huge struggle. Many patients grieve for their old lives and have to learn how to enjoy life in new ways. Coming to terms and learning to be happy with an illness is a rough and inspiring battle. By skipping this struggle and only showing illness as temporary, producers miss an opportunity to share these inspirational stories.

How Do We Fix This?
The more that chronically ill people share their experiences, the better the representation in the media will be. People have trouble understanding the issues chronically ill face and representation of chronic illness in the media is a step in the right direction. An accurate representation of this struggle in the media, TV shows, and movies would do wonders for awareness and understanding.

The Privilege of Independence

When my parents dropped me off for my first day of camp when I was five they expected it to be tough. It was tough, but just for them. I was ready to leave and meet new people and to be on my own. When my dad came to visit me at lunch I even gave him the cold shoulder; I was busy with my new friends! I have always been extremely independent even that young. I do not like having to rely on others and prefer to trust myself to take care of me.

We expect to need others to rely on both early and late in life. Children are unable to care for themselves and the elderly often experience the same fate. In our society this dependence is both accepted and expected. However, as adults, young and old, often we are expected to take care of ourselves and maintain 100% independence. This is not always the case. What happens when we get cannot rely on ourselves alone?

Independence and being able to rely on ourselves alone is a privilege. It isn’t one you would know you have unless you have lost it. For those of us with severe physical or mental illness we no longer have that privilege. If we do not rely on others (or are not lucky enough to have these people in our lives) we end up homeless, dead, or injured.

A few years ago I experienced 3-4 blood clots that sent my health into a downward spiral. I went from a fiercely independent high-achieving pre-med student, an avid volunteer, a distance runner, and a dancer to becoming bed-ridden. I also have Dysautonomia; in my case means that I faint anywhere from once a week to once every 15 minutes. I also discovered I have Ehler’s Danlos, leading my joints to dislocate or pop out of place and cause frequent excruciating pain. Occasionally, I can live normally and near independently, but often I have to rely on others. Sometimes I cannot get food myself, make enough money for rent, or even walk to the bathroom without a shoulder to lean on.

It has been an incredibly difficult journey, and I have had to learn to rely on other people and let go of independence. I loathe it; I abhor having to depend on others. I really do. Learning to rely on others without feeling like a burden has been one of the hardest thing I have had to face and likely will continue to face for the rest of my life. Because it is so difficult, I absolutely hate when people who are judgemental about my “lack of” independence.

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Friends, family, and infuriating strangers frequently make comments about how important maintaining independence is. They are often incredibly judgemental in doing so, and they are not entirely wrong. Many forms of independence are important and healthy. For example, I am all for healthy attachment in relationships. Individuals should stay an “I” instead of morphing into a “we” without lives of their own when they enter relationships, friendship or others. However, asking for help from your loved ones when you need it can be absolutely healthy and necessary. That is not an unhealthy loss of independence and should not be treated as such. Independence should be valued, but independence does not mean doing everything on your own. You can retain a healthy independence and depend on the help of others.

It has taken me some time to realize that asking for help when you need is not admitting weakness, but I have become a better person and have a better life as a result. I can’t live alone, but have learned to better appreciate my wonderful roommates. Learning to get help from others has helped me be a better friend too. Learning how to ask what you need from people helps them better ask you when they are in a tough spot. Realizing the strength it can take to ask for help makes it easier to help loved ones with that in mind. Additionally, I know the people who surround me are real friends and that we can lean on each other when we need to.  

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I have my own hobbies, friends, and job. I am independent in all the healthy ways that matter. However, I do have to rely on others and let go of independence because of my illness and that really is okay. Independence is absolutely important, but people need to stop equating needing the help of others with an unhealthy dependence on others. If you are healthy and have the privilege of not having to depend on anyone else- good for you. You also need to realize that is not the case for all of us. Many of us have to rely on others to survive and that does not make us any lesser than those who do not.