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.

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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.

Dating With A Chronic Illness: The 7 People You Will Meet

Dating with a chronic illness can complicate things. Here are the 7 types of people I’ve run into:

1. The One Who Ignores Your Illness

A lot of people have no idea how to interact with someone with a disability. While some people may attack the issues you face head on, these people avoid the topic at all costs. They rarely ask you how you are feeling, avoid topics of doctor’s appointments, and generally clam up when the topic turns to anything health related.

In my experience, these people do actually care if you are okay, but really don’t know how to go about talking about it. Unfortunately, not discussing a huge struggle in your life with your partner just doesn’t work. Education leads to understanding. If someone isn’t willing to talk about your illness it will be more difficult for them to understand problems that pop up. They lack the knowledge to understand why their sick partner had to cancel at the last minute, why they can’t eat the chocolates they gave them, or why those surprise concert tickets pose a problem.

MRW my friend tells me he proposed to the girl he's been dating for three weeks... - Imgur

2. The One Who Pities You

I love it when a partner rubs my head when I have a migraine, or is sympathetic to my venting. This sympathy can cross over to pity which gets old fast. Having a chronic illness is definitely a struggle but I don’t want to be constantly reminded “how strong I am” or asked “how I don’t give up.”  I want to be an equal in my relationships, and being constantly babied takes away from that.

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3. The Overly Helpful One

Yes, someone can be overly helpful. These partners go above and beyond when trying to help you manage your illness. They even help you with things you don’t ask for, and for a while everything is much easier. The problem with the overly helpful partner is that they almost always burn out. They put helping you with your illness over their own needs. And when they burn out you are the one who gets burned. Not addressing their personal needs leads to them resenting the person they are trying to help.

These breakups are often very abrupt and sudden. One day they are driving you to the hospital and sitting up with you all night and the next day they leave you alone in the hospital to go to a party saying it is all too hard. All of a sudden all the things they did for you (that you never asked for) are all your fault and you aren’t thankful enough for everything they do. Finding someone who can be honest about their needs and not stretching themselves too thin is extremely important.

When i realize the girl I started dating has low self-esteem.  - Imgur

4. The Expert

Calling this partner the expert is wholly inaccurate and really just my way of ridiculing them. People with chronic illnesses will run into “experts” on their condition all the time. They suggest ridiculous things you have already been checked for or try to tell you about an illness you have had for years and understand very well. I’ve even dated people who get upset with me for not following their suggestions, “have you been checked for gluten sensitivity again yet?” They think the only reason you aren’t cured is because you haven’t had their ideas yet. These people also see not following their ridiculous suggestions as not trying hard enough.

MRW my parents start asking too many questions about what I'm doing these days... - Imgur

5. The One Who Can’t Stop Asking If You Are Better Yet

Sometimes you can explain your illness a hundred times, define chronic repeatedly, and do your best to educate your partner and they will just never get it.  They will say things like “oh, you’re still sick” or “wow you still aren’t feeling better” or “when you are healthy we can go out.” I have a chronic illness! Chronic means long term; I am always sick!  They just don’t get it no matter what you do.

MRW my teacher yells at me for calling a girl dude because it's condescending towards my whole gender - Imgur

6. The One Who Can’t Handle It

This is the most common person I run into while dating and I must say it has left me frustrated. Sometimes my chronic illness comes up naturally in conversation, and other times I have to modify plans and it will come up. It is perfectly common to never hear from them again after this. For a while I thought I was paranoid and that it has nothing to do with my illness or that people just thought I was being flaky. However, I have had a few people outright tell me they aren’t okay with dating someone with a chronic illness.

For example, on one online date, within fifteen minutes, I had my date say “But she had Crohn’s disease and I am sure as hell not going to put up with that bullshit.” I walked away. What an insensitive jerk.

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7. The One Who Supports You

I’ve found finding people who support you through your illness to be incredibly rare and even more so in dating. The best partners treat the chronic illness as something you are fighting together, not a negative personality trait that is your fault. Remember that you always deserve someone who supports you!

MRW I find a profile on a dating website that mentions imgur - Imgur

FOMO: 8 Ways to Stay Social with POTS

The decline in quality of life we experience with POTS is comparable to someone with congestive heart failure. So it isn’t surprising that our social lives, frankly, suck. Finding friends that understand when you have to cancel is incredibly difficult. Finding friends who understand to the point where they don’t insist on activities that include standing, alcohol, or being out in the heat seems to be impossible.

Last Monday I tried to go out with friends and ended up puking in the bathroom and sleeping in the car. Then at a small party this weekend I was feeling terrible and had to keep going outside so as to not throw up. I fainted in the hallway, was in a ton of pain, and just all around felt awful. When I came back my partner made a comment on how I was missing out on everything. Well that comment hit me really hard. It really does feel that way.

I try and go out with friends and about a third of the time I feel too terrible to enjoy myself. Almost every single time I am around people I feel isolated by the pain I’m in. I do miss out on things with my friends, and most of my friends have left me behind altogether. The worst part is that I am not alone, and that most of us with POTS feel this way. In fact, 98% of us felt like POTS gets in the way of a social life.

Does POTS prevent you from socializing as much as you’d like?

Yes 98%
No 2%

Source

So what is there to be done? Humans are social creatures and not being able to socialize is a huge detractor from quality of life. Unfortunately, there is no magic solution, but there are things that may help:

1. Educate your friends

Unfortunately this only works if you have really awesome friends. A lot of time my attempts to educate fall on deaf ears. Some of the resources I have found most helpful are the spoon theory or this condensed and easy to understand information from Dysautonomia International. Being clear about activities you can and can’t do is essential. People aren’t going to make the connection that if you are heat intolerant you can’t go to an amusement park in the summer (even though it seems obvious to us), or that if over-stimulation messes with your POTS a 3D movie is really going to make your symptom worse. Being clear about what you can and can’t do helps a lot with understanding.

2. Push yourself, but not too hard

About two thirds of the time when I push myself to do something social it ends up being fantastic and I don’t regret my choice. I may not feel well, but being around friends keeps my mind off of it and finally getting to feel slightly normal. It really makes a world of difference in my mood and ability to deal with my illness. That is why I say push yourself, but not too much. We all know what happens when you use too many spoons.

Every single time I want to go out it involves “pushing myself.” Even getting dressed and ready is a huge accomplishment. I don’t think people around me realize that, but i wish they did. You are the only one who can gauge what you are up to doing.

3. Join online support groups

These have been so helpful to me and lots of other chronically ill people. Just go to Facebook and search for your condition. Be aware that some groups may not be private and you may want to make an alternative account.

4. Join in-person support groups

There are a few of these scattered throughout the world. It definitely helps if you live in a big city. If you live in Denver or Colorado message me on Facebook and I will add you to our group. Finding just one other person to chat with occasionally can be really helpful!

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5. Try Meetup to find people who get it

Meetup is great for finding general chronic illness groups. People in the group may not have POTS, but they know what it is like to live with similar problems.

6. Suggest Activities that Work for you

The default with my friends is to go out to bars when we want to hang out, but sometimes that is too difficult. Standing, driving, drinking, and (for some reason) bar-stools are not things I do well with all the time. A lot of times your friends may be completely happy to binge watch Netflix or have a movie night in and all you have to do is ask. Suggesting things you can still do instead of cancelling is a great way to stay social. Sometimes it is hard to ask because it feels like you are expecting others to accommodate you, but if you have good friends they will be happy to spend time with you no matter what you are doing.

7. Don’t Worry About Being “the sick person”

This is a difficult one and I really need to work on taking my own advice. You may have read my post about being temporarily paralyzed after an injection. Well that weekend I had a social event that I really wanted to make, but couldn’t walk. I bit the bullet and went out in a wheelchair. Using a wheelchair when you only need it is so confusing to people for some reason, but I recommend it wholeheartedly. Using a wheelchair makes going out so much easier because it takes away from the standing and walking usually involved. I got a lot of questions, but I don’t mind those from friends. People were surprisingly eager to help. I didn’t feel like the “sick girl” either. My friends and acquaintances seemed to talk to me as a person, and not talk down to me as someone in a wheelchair which I was worried about. Plus I got to wear heels without falling on my face- added bonus.

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Fear of fainting is another barrier to going out. Fainting in public is not fun. People assume you are drunk, freak out and call and ambulance, give you terrible and unnecessary CPR (and sometimes break bones), or literally step over your unconscious body. So it is understandable that 44% of have a fear of fainting in public that prevents us from going out. My recommendation is to carry these cards, wear a medical bracelet, make sure any friends around you know what to do, and not to go on first dates or hang out with complete strangers unless you feel great. Always remember you can turn down an ambulance ride; they will try to convince you to go because they won’t understand POTS. That is why it is helpful to have a friend who knows about your condition and will stand strong in not letting them take you to the hospital.

POTS-related barriers to socializing

Low energy 87%
Brain fog 60%
Unable to stand 56%
Physical pain 54%
Fear of fainting in public 44%
Unable to drive 38%
Fear of needing bathroom too often 26%
Unable to shower or groom properly 25%
Unable to drink alcohol 14%

Source

8. Be Honest About your Needs

I should not have stayed at the party this weekend. It ended up with me feeling ever worse and I wish I hadn’t been stubborn. If you feel awful, rest. The fear of missing out (FOMO) can be a hard thing to deal with, but it is better than making all your symptoms flair. My friends joke that everything crazy happens right after I fall asleep, missing out sucks, but what else can I do but laugh at it?

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Compression For The Clueless

Doctors insist that POTS patients make many lifestyle changes. One of the easiest lifestyle changes you can make is wearing compression garments. Compression garments work to raise low blood pressure, prevent swelling, and minimize blood pooling. Compression garments aren’t a magic fix, but they help many POTS  patients enough to use them daily.

Myths
Compression garments are uncomfortabledream-panty-2014-all-med
This is often true at first. Finding the best length, pressure, and brand will make a world of difference in your comfort. My favorite, most comfortable tights are JUZO soft. They come in different colors and pressures. Experimenting with different tights can be expensive, but in many cases it is worth it to find ones you are comfortable to wear often.

Compression Garments are ugly
They don’t have to be! Medical white and tan are not your only options. Rejuva health has compression garments that I get compliments on a lot- no one even notices they are for compression. However, my favorite tights are the not from Rejuva Health because I find other brands more comfortable. For example, my favorite (Juzo soft) also come in fun colors (as seen above to the right) and are nice and comfy. Here are some ideas to rock the tights and look fabulous instead of sick.

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This is not me- Source

You Have to Wear Compression 24/7
I wear compression tights nearly every single day, but not for everything. When I am going to be up on my feet and standing a lot they are a necessity. However, if I am watching a movie at home I don’t wear them. I can put my legs up and take a break from compression; it feels nice- even when they are comfy. I also do not wear compression to sleep unless I am having severe leg pain. If I want to wear compression constantly, I will wear a lower pressure while relaxing.

You Don’t Have Choices

There are a lot of different options. You can choose the color, length, pressure, open toed vs closed toes, open crotch vs. closed crotch. In fact, all your options can even be overwhelming once you know where to look. Here and here are great places to start.

Tradeoffs
There are some tradeoffs for compression tights that you will have to figure out for yourself what is more important.

Heat vs Compression
In the summer, compression tights become difficult. I am heat intolerant like most POTS patients, because I feel terrible the warmer I am, it is a tradeoff to what will make me feel best. Personally, I have found that 80F degrees and below compression garments are worth it. Beyond that, I get too warm for compression.

EDS vs. Compression
As the pressure increases in the compression garment, it becomes more difficult to put tights on. This can be a problem if you have Ehler’s Danlos as your fingers may subluxate or dislocate. These people may want to stick to a lower pressure or get help putting compression garments on.

Sometimes putting on compression tights is difficult, with or without EDS to deal with. This video shows some methods. Don’t worry, with some practice it gets much easier! 

Levels of Pressure*
There are different levels of pressure in compression gear. More pressure is placed on your body as the number increases. If you are willing to spend some money it is easiest to start at 15-20 mmHg and go up in compression until your legs aren’t swelling or hurting as much. Basically, you are looking for the lowest strength to get the job done. If you are tight on cash consider buying 20-30mmHg because it is most commonly used and works the best for most people. Increasing pressure should be done with a doctor if you still do not get relief at 20-30mmHg.

15-20 mmHg
This is a very minimal pressure that is often found in sports compression garments. This low amount of pressure is perfect for short travels and patients with extremely mild swelling and blood pooling. This compression is also commonly used in pregnant women because it is gentle.

20-30 mmHg
This is the most frequently prescribed compression level. It is perfect for extended travel and moderate swelling. This is the most common pressure I hear recommended for POTS, and the one with the most options for stylish tights.

30-40 mmHg
Do not use without speaking to a doctor; you should not wear this high of compression unless medically necessary. I have heard of some POTS doctors prescribing this level for those with severe blood pooling and swelling. This is the strength I usually wear, but for Post-thrombotic syndrome. Compression tights help with my blood pooling, swelling, and pain.

40-50 mmHg
Do not wear this high of compression unless medically necessary as deemed by a doctor. I have never heard of a doctor recommending this level for POTS patients.

Levels of Coverage
argyle-copyKnee High
If you experience a lot of leg swelling, I would steer clear from this length. The swelling in the legs sometimes gets so bad that the band around your knee area that the compression socks end up cutting off circulation. I started out wearing this length but after seeing how much swelling was happening above and around my knees I was told to steer clear.

Thigh Highd_19
Whether you like these or not probably has to do a lot with your body type. If you have slim muscular thighs I have heard of them being comfortable. If you are at all curvy (it doesn’t take much) thigh high compression tights may dig into you, roll down, and look awkward (even with the correct size).

floral_1Waist High
This length is my favorite. I feel like I get more compression, and at least for me they are the most comfortable. People wear tights all the time so I don’t feel like I am dressed strangely while wearing them.

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In some cases of POTS, blood pooling that can even go up to your abdomen. I just recently started using an abdominal binder- I didn’t think it would work. It actually helps a lot more than expected. You can find a “waist trainer” that does the same thing and is infinitely more attractive.

Solidea 0433A5 Bilateral with Gauntlet 6_BlackArm Compression
Blood pooling also occurs in the arms. It is not as severe and not even a symptom in many POTS patients. Sports shirts with arm compression or compression shirts with sleeves may help you feel even better. The arm compression helps me minimally. I try to buy it in the winter because that is the only time arm compression outweighs my need to stay cool.

Compression garments don’t have to be ugly or uncomfortable. There are plenty of cute outfit ideas all over the internet for tights. Ask your doctor what compression level to start with and don’t be hesitant to experiment with different brands and lengths.

*This is not intended to replace medical advice. Always ask your doctor if you have any medical questions!

Look for even more on compression in my upcoming book!

PillPack Review

Within the past couple months, my Facebook advertisements have been all about Pillpack. I decided to try PillPack out and share my experience. In theory, Pillpack is revolutionary. Pillpack acts as a pharmacy, pre-wrapping each dose of your medicine based on the time of day and sends you all your meds by mail. PillPack is supposed to even work with your pharmacy so you don’t have to play the middle man. It sounds great- no more forgetting if I already took a dose, no more wrestling with pharmacists and insurance companies, no more unorganised pill bottles, and no more standing in long pharmacy lines!

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Unfortunately, all I found was in Pillpack was disappointment. I signed up and put all my medicines in, and then waited for PillPack to transfer the prescriptions over. PillPack got one medicine. One medicine doesn’t even begin to cover what I have been prescribed. PillPack filled just one prescription, propranolol- the one that is most important for me to take. PillPack shipped me the propranolol. In the box were 120 small packets each with one single tiny blue pill in them. Suddenly the little packs didn’t seem handy; instead they were a pain to open and not exactly environmentally friendly. Maybe with all my medicines it would be worth it, but with one? Wasteful.

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One of the primary reasons I tried PillPac was because I was so sick of pharmacies. Having to deal with both PillPack and a pharmacy was actually making things more difficult for me so I emailed and cancelled PillPack. I received an email acknowledging my cancellation.However, PillPack ignored my cancellation. Instead, they shipped out my Propranolol to the wrong address. I didn’t bother changing my address after I moved with PillPack because I cancelled their services- why would I?

I went without propranolol for a good part of the weekend. Now that I tracked down where my package went, I have to drive across town to hopefully get my medicine. There is a good possibility that they have returned the package since I don’t live there. Worst of all, my regular pharmacy cannot fill my prescription (or my insurance won’t cover it) because PillPack sent out this order without my approval. PillPack did not succeed in simplifying my health care- it complicated it.

I do not recommend using PillPack. I can see how the PillPack system may work in others. Some people may have more success, such as those without a pain doctor or those whose medicine and dosage is constant. Pain doctors write new scripts when you come into the office each month. Some pain specialists do this for even non-narcotic medicines. PillPack isn’t well equipped for the kind of care that changed each month. PillPack is most helpful in people with a few medications that are not being changed, experimented with, or adjusted. If you are, like me, still trying to figure out what medicines and doses work the best- avoid PillPack.

It Is Okay to Feel Like Giving Up: A Letter to Those Who Support A Chronically Ill Loved One

Dear Supporters of a Person Who Is Chronically Ill,

Today I want to give up. It happens every once in a while. Chronic pain is a fight you never get breaks from. It is all day every day, and lately for me it has been all night every night. Pain and lack of sleep have left me feeling incredibly discouraged. Sometimes I feel as if being in pain for this long warps my thoughts. All I want is a break from the pain. It is easy to want to give up when you can’t even get a break from pain while sleeping.

Additionally, I don’t feel like I can talk to anyone who usually supports me. I don’t feel like I am allowed to do anything than fight this every second of every day. I don’t feel like I am allowed to feel anything other than hope and inspiration. I don’t feel like I am allowed to be this discouraged.

feelings

When you feel like giving up feeling isolated is one of the worst things you can add to the mix. I know I won’t give up. I know that I will push through because I always do. It would be really nice to not feel so alone in this feeling right now.

In the past, as I’ve talked to people around me about these feelings I have noticed a pattern. They listen long enough to get scared, shame me for feeling this way, and change the subject. I understand that is an uncomfortable subject. I really do, but when you respond in this manner the next time I feel this way I won’t feel like they can talk to you. That is where I sit today.

So I am here to tell you what I desperately wish someone would have told me a long time ago: there is nothing wrong with feeling like you want to give up. The important thing is that you don’t give up.

Do not shame us for feeling this way.

So many of us have to fight so hard every day- against pain, loss of friends, loss of social life, and loss of our healthy self. It is okay to feel tired from this battle. When you shame your loved ones for feeling this way you guarantee that they will not talk to you the next time they feel this way. That is the very worst time to feel alone.

You can remain supportive and positive without shaming them for feeling this way. If you do this then your loved one is more likely to seek out you to talk to rather than some terrible alternatives.

Don’t see this feeling as weakness.

Wishing you could give up isn’t a moment of weakness; it is expected when you are fighting an uphill battle against your own body.

Listen.

A lot of the time we aren’t looking for a solution. We just want support- someone to talk to. You don’t have to know the perfect thing to say. Sometimes you don’t have to say anything at all. Sometimes a hug or shoulder to cry one is the best thing you can do.

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Let us feel the full extent of our feelings.

Crying, screaming into a pillow, and cursing out your illness are all things we need to do sometimes. Let us feel all our feelings without judgement.

Get frustrated at the illness, not your loved one.

Dealing with chronic illness can be frustrating to the patient and those around us. You don’t have to be a saint and never get frustrated. Instead, direct the anger at the illness and not the patient. When they come to you frustrated you will be able to support them better and relate more to their struggle. When you tackle the problem together and see it as an obstacle to work through instead of a problem with your loved one you are much better at supporting others.

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Because you and your loved one are fighting the same battle (in obviously very different ways), you are often the one best equipped to understand and support. You probably have similar frustrations with your loved one’s illness. Use this to relate and empathize, but do not make their struggles about you.

Seek help when necessary.

It is not your responsibility or your fault your loved one feels this way. You aren’t expected to support us alone. Sometimes you will need help and that is okay.

If these feelings in your loved one are ongoing they might need therapy. Don’t demand they go. Suggest it and tell them how worried you are about them, how much you care about them, and that you want to continue to support them but you can’t do it on your own.

An Introduction to the Hypermobility Type of Ehler’s Danlos

Ehler’s Danlos is a group of inheritable connective tissue disorders related to the formation of collagen. EDS was named by two physicians, Edvards Ehlers and Henri-Alexandre Danlos, in the 1900’s. Hypermobile Ehler’s Danlos (hEDS) is the least severe type of Ehler’s Danlos, but it can still be a debilitating and cause a lot of serious problems. HEDS used to be referred to as Ehler’s Danlos III or type 3, but that terminology is being phased out. Most of the problems that arise from hEDS are skeletomuscular in nature, but because collagen is incredibly important throughout the body other serious problems may arise.

Collagen is a connective tissue that acts as the “glue” keeping our bodies together. Genetic alteration of EDS at the molecular level also leads to weakened defective connective tissue within the hEDS.

Hypermobile Ehler’s Danlos ranges in how it affects people. Sometimes it can cause small problems or it can be debilitating and completely disabling. HEDS is an invisible illness; you usually cannot tell someone has hEDS simply by looking at them.

Prevalence
HEDS causes more problems in women because they are typically already more flexible than men. Female hormones may also worsen joint laxity. Between 1 in 5,000 and 1 in 20,000 people have hEDS and experts think that it is largely under-diagnosed. hEDS may be the most prevalent inheritable connective tissue disorder.

Diagnosis
Unlike other types of Ehler’s Danlos, there is not yet a genetic test that can effectively diagnose Ehler’s Danlos III. Usually, the Beighton score is used along with a family and patient history to diagnose hEDS. Anything above a five out of nine on the scale is usually considered a positive result. Minor Diagnostic Criteria, as follows, are also important in the diagnosis of hEDS.

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Minor Diagnostic Criteria for the Hypermobility Type of EDS[1]

  • Family history of similar features without significant skin or soft tissue fragility in a pattern consistent with autosomal dominant inheritance
  • Recurrent joint dislocations or subluxations
  • Chronic joint or limb pain
  • Easy bruising
  • Functional bowel disorders (functional gastritis, irritable bowel syndrome)
  • Neurally mediated hypotension or postural orthostatic tachycardia
  • High, narrow palate
  • Dental crowding

Before seeing a geneticist, Classical EDS and hEDS may be hard to differentiate. More temperate cases of classical EDS may be misdiagnosed as hEDS initially. Because the two conditions have different common complications receiving a correct diagnosis is crucial for treatment.

Genetics

It is generally agreed upon that hEDS is passed on in an autosomal dominant manner. This means that the passing of hEDS is not linked to one gender or the other and that only one parent must have hEDS for their children to as well. It also means that those with hEDS have a 50% of passing it on to their children.

People with hEDS almost always have one parent with EDS as well. In some cases, Ehler’s Danlos can be well-managed in one generation and a disaster in the next. For example, my maternal grandmother and mother both get a high score on the Beighton test and meet the diagnostic criteria for hEDS but have never been diagnosed with hEDS.

In more rare cases a de novo mutation (basically a brand new mutation) may arise; patients may have hEDS without biological ancestor’s having the condition. Some cases of hEDS have had a genetic factor linked to their condition, TNXB, but not all patients with hEDS have “haploinsufficiency of tenascin-X (encoded by TNXB) associated with EDS.”[2]

The Ehler’s Danlos Network claims that Ehler’s Danlos can also be passed on in an autosomal recessive pattern. It is also suggested that carriers of this autosomal recessive hEDS may have symptoms of hEDS but without “skin hyperextensibility, easy bruising, or other hematologic manifestations.” [3]

The genetics behind EDS can be complicated, but usually hEDS is passed along in an autosomal dominant fashion with these few exceptions. When these exceptions happen we may see hEDS without a family history or some strange cases of recessive carriers having symptoms.

Symptoms
Psychological

  • Anxiety and depression are common in hEDS and are exacerbated by poor sleep and pain.

Neurological

  • Migraines are prevalent with hEDS patients.
  • There seems to be a higher occurrence of terrible vision in hEDS. HEDS sufferers are more likely to have an eye prescription of worse than -6.0.
  • Postural Orthostatic Tachycardia Syndrome (POTS) is a type of Dysautonomia (dysfunction of the autonomic nervous system) commonly seen in hEDS sufferers. There is speculation that hEDS is one of the important causes of POTS.
  • Inner ear problems in hEDS patients lead to balance problems and potential hearing problems.
  • Neuropathic pain, pain caused by damaged nerve fibers, also occurs in hEDS patients.

Skeletomuscular

  • HEDS patients routinely suffer through subluxations and dislocations. These joints that “pop out of place” may be large joints of small joints.
  • Tendonitis and bursitis are also common in hEDS.
  • Degenerative joint disease (DJD) is more likely to occur at a younger age in hEDS.
  • Temporomandibular joint disorders (TMJ) are also more likely to occur.
  • Iliotibial band syndrome or “snapping hip syndrome” is commonplace in hEDS patients.
  • Osteoporosis, especially at a younger age than expected, is also a frequent manifestation of hEDS.
  • HEDS patients are more likely to walk slowly and to have a shorter gait than their peers due to joint pain and problems.

Gastrointestinal

  • Bowel and digestive problems are often seen in Ehler’s Danlos. A few prevalent comorbid (conditions occurring together) conditions are IBS, gastroparesis, acid reflux.

Dermatological

  • HEDS patients often have veiny skin that is velvety, stretchy, thin, and soft without moisturizer.
  • Slowed healing and scarring is also often seen with hEDS.
  • HEDS patients are more likely to have molluscoid pseudotumors, fleshy lesions associated with scars.

General

  • Ehler’s Danlos patients are at a higher risk of prolapse, especially uterine prolapse, and in general.
  • Dental crowding and periodontal disease are common in hEDS patients.
  • Sleep impairment, usually caused by joint pain, is a common symptom of hEDS.
  • Hernias are more likely to occur in hEDS populations.

Hematological & Cardiovascular

  • Easy bruising or bruising with no obvious cause is common in Ehler’s Danlos.
  • Aneurysms are more frequent in EDS populations compared to the general population.
  • Hematological manifestations of hEDS mimic von Willebrand disease and can lead to hypocoagulability (blood that takes longer to clot).
  • Raynaud syndrome and acrocyanosis, the fingers, face, or toes turning blue or white due to poor blood flow, is accepted as a usual occurrence.
  • Mitral Valve Prolapse (MVP) is more common in hEDS patients.
  • Aortic dilation is also commonly seen in hEDS patients.

Treatment
To be frank, I find treatment options for hEDS pathetic. The best options we have are physical therapy and low-impact exercises such as swimming or pilates. However, there are very few physical therapists who actually know of hEDS and can help without worsening symptoms. Many physical therapists incorporate stretching, some of which is a terrible idea if you have hEDS. It is important to have a physical therapist who won’t make you worse. There is a book for physical therapists, but the tiny thing is $70- inaccessible for many people bombarded by medical bills.

Managing pain is one of the primary goals in treating hEDS. However, pain treatment is controversial. Experts and patients argue over the effectiveness and safety of using opiates, marijuana, and even anti- inflammatory medicine for long-term use in hEDS. More research needs to be done on what helps hEDS patients most.

Mobility assistance devices and braces can also help some patients. Everyone knows about ankle, wrist, and knee braces. With hEDS, you learn about the strange braces and splints- like ring splints for finger joints or hip braces. These devices are incredibly helpful for many but incredibly expensive. A single ring splint for a single joint on the fingers averages $50 and thumb splints can be hundreds of dollars.

Occupational therapists are sometimes recommended for hEDS. They can help teach how to conserve energy, fight fatigue, and think of solutions for problems caused by your chronic illness. Even with treatment many hEDS patients have trouble working. Therapy is also suggested to learn how to live with and deal with this condition and the depression that often accompanies chronic pain.

Prognosis
It is common for people to degenerate as they get older; aches and pains get worse with passing years. The good news is that hEDS patient’s joints get less loose as they age. The bad news is that in every other way you get worse with age with hEDS. HEDS is a lifelong disease.

Arthritis and degenerative joint disease are seen much earlier in life and, therefore, are given the opportunity to get much much worse. For example, I was diagnosed with DJD in my hip at 18; at 24 my DJD is even worse. I’ve been told to expect it to become harder to manage as I age.

All the literature suggests that hEDS does not affect life span. However, a life-threatening complication, aneurysms, are more commonly found in hEDS than the population. I am not sure what to make of this contradicting evidence so interpret its meaning as you like.

Quality of Life & My Experience
If you have read the symptoms for this condition it may not take a detective to figure out that hEDS can lead to a worsened quality of life. Joint pain is the most common complaint among hEDS sufferers. Pain is severe enough to hugely lessen our quality of life. Constant pain in multiple joints, dislocations, and easy injury is exhausting to cope through.

My experience with hEDS has been terrible and incredibly painful. In the past 72 hours I have dislocated/ subluxated/ hurt somehow my left hip, my right shoulder, my right thumb, my right wrist, and my left ankle. Popping joints in and out leads to a lot of inflammation and pain, but I have regular pain even on top of those joints that won’t stay in place. Discs in my lower back, SI joint problems, and a constant rib pain also plague me daily. The only time the pain recedes is when I swim- which is hard to do when your body is literally falling apart. That long list of problems is common with other hEDS sufferers. Collagen is widespread so our problems are as well.

Many others with hEDS have it even worse than I do. Some people are unable to work in any way and are completely disabled. HEDS has effectively hit the pause button on their life. Because hEDS isn’t common we don’t get much understanding or really effort from medical professionals.

Since I was diagnosed three years ago I have watched about three dozen people in my various support groups commit suicide. No one would take their severe pain seriously and they couldn’t handle it anymore. HEDS pain needs to be recognized, acknowledged, and treated effectively. Whichever side of the marijuana and opiate debate (whether they should be used to treat hEDS pain) you are on, it is important to at the very least acknowledge what these people are struggling through and how their quality of life is affected.

I contemplated whether I should add this paragraph because it is very personal. However, I think it will enhance understanding of how much hEDS has touched all aspects of my life and does so to many others. It is common for women with hEDS to have complications with pregnancy, fear to passing on their bad genes and suffering, or simply cannot have children due to their health. For me, the genetic component of hEDS is a primary reason I made the decision never to have biological children. I do not like 50% odds and have no way of knowing if a biological child would have a severe case or not. I don’t want to pass pain on; there is enough suffering in the world. It was not an easy decision, but a tough one that hEDS women are forced to make.

Learn More
Here are some great resources on hEDS:
http://www.ncbi.nlm.nih.gov/books/NBK1279/
http://www.ednf.org/hypermobility-type
I recommend using EDNF resources only on this page. Some of their other information is potentially harmful to patients.
My book will also have an extended section of EDS.
[1] http://www.ehlersdanlosnetwork.org/hypermobility.html
[2] http://www.ncbi.nlm.nih.gov/pubmed/23284009

[3] http://www.ncbi.nlm.nih.gov/books/NBK1279/

Sunday Skeptism: Rethinking Essential Oils

Having a chronic illness that has no cure and only a little research often makes someone vulnerable to try anything once. Some people pray off of that vulnerability and try to market “natural” products. These people take advantage of the poor science education most of America receives by making their claims sound scientific. They usually aren’t. In the case of essential oils? The claims are definitely not scientific.

Now I will admit I have received “aromatherapy” during a massage and it was nice and relaxing. I am not saying essential oils and aromatherapy are even a bad thing if you just are using them because you want to smell something nice. The problem I do have with essential oils is the medical claims being made.

Essential Oils
Essential oils and aromatherapy claim that oil extracted from plants treat all sorts of conditions and symptoms. There is no denying that some plants do have uses, we have some medicines from plants that  have medicinal properties. For example, aspirin is from the willow tree.The majority of these claims about these plants have no merit.

If you want to take a look at some of the absurd claims these companies make go here. Not only are these claims not backed by science, but they can actually be dangerous. Take a look at the chart below which actually suggests different essential oils are alternatives to certain medicines. Following this chart instead of your doctor’s advice could be deadly.

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Claim: Essential oils are a safe an effective replacement for modern medicine.

The process to have a drug approved by the FDA is long and involved. Essential oils avoid this process by hiding under claims of it being “alternative medicine.” Like most alternative medicine there aren’t many quality scientific studies showing their effectiveness. Essential oil companies don’t even have to prove what they claim is in their product in their product. They aren’t pressured to provide scientific evidence proving the claims they make about these essential oils.

Claim: Essential oils are safe and natural.

In reality, natural is not always better. People seem to be convinced that there are less risks with natural products. This assumption is not necessarily true and can cause people to overlook the risks associated with these natural products. For example, essential oils can interact with medications, burn your skin, cause allergic reactions, and may be deadly if ingested.

Claim: Tea Tree Oil has been suggested to have antimicrobial and ant-inflammatory properties.

There is a small amount of science to back up this specific claim and this is the only claim I researched with any merit. However, these properties haven’t been observed in the human body and are quite weak. More research needs to be done before I rush out and buy tea tree oil.

The Cost

Each tiny bottle may cost as much as $20 and a “Family Physician Kit” costs $113. If your doctor uses these you may want to see a better doctor. Essential oils claim different properties for each type people are often sucked in and end up with dozens of these overpriced essential oils. It can become a really expensive “treatment” very quickly.

Many people claim that essential oils do help them and I’m not going to insist they listen to science and stop using them. However, do not replace medical treatment with Essential Oils! Maybe just enjoy them for what they are instead of buying into false claims. After all, they can smell pretty dang good.

I understand wanting to try everything in hopes that you might feel a little better. I really do. However, these “therapies” won’t help and may even hurt you. Don’t fall for their tricks or let them take advantage of you. Oh and never trust Mercola.

Coming Soon:
8/30- Essential Oils