Sponsored Post: "Why Salt Can Help Alleviate Symptoms of Dysautonomia"

Today's post is a partnership between Kind of Broken blog and the makers of SaltStick. This is my first sponsored post and I decided to share this post with you because I have used their product every day for years now. I wouldn't have agreed to this partnership if I didn't believe in the product. Enjoy this informative sponsored post and some of my comments at the bottom:

"As most readers of Kind of Broken probably know, Dysautonomia is an umbrella term for autonomic neuropathy, meaning the autonomic nervous system (ANS) does not function correctly, reducing the effectiveness of nervous signals between the brain and other organs including the heart, pupils, intestines and blood vessels. This is why Dysautonomia patients often suffer from symptoms such as low blood pressure, rapid heartbeat, tunnel or blurry vision.

One common manifestation of Dysautonomia is known as postural orthostatic tachycardia syndrome (POTS), which occurs when the ANS cannot compensate for changes in body position. Thus, standing is usually accompanied by rapid increases in heart rate and a drop in blood pressure.

The link between low blood pressure and severity of POTS symptoms has been heavily explored by the medical community. However, the advice to consume ample amounts of water and salt to increase blood pressure and relieve symptoms hasn’t changed much over the years.

Here’s a little more detail on why salt can help alleviate symptoms of Dysautonomia:

The link between POTS and low blood pressure:

As we said above, the medical community has heavily explored the relationship between POTS and low blood pressure. Currently, there are three main theories:

      I.        As described by a 2012 study published in the Journal of Geriatric Cardiology, the act of standing causes blood to pool in the legs and feet, due to gravity. In a healthy person, the heart rate will increase slightly and the peripheral blood vessels will constrict to keep blood in the upper body. This response depends, in part, on the ANS. In a Dysautonomia patient, the nervous system does not properly activate these changes in heart rate and blood pressure, and all the blood will remain in the patient’s legs and feet, resulting in lightheadedness upon standing. Bottom line: An impaired ANS prevents the body from responding to changes in position that require increases in heart rate and blood pressure.

    II.        Another theory, suggested in a 2005 American Journal of Physiology paper, states that POTS symptoms are due to an overreaction to changes in the baroreflex mechanism, which is responsible for regulating blood pressure to the brain and other organs. The 2005 paper found that POTS patients’ bodies have an exaggerated response to changes in the baroreflex, which could result in increases in heart rate. Bottom line: POTS patients’ bodies do not properly respond to the baroreflex mechanism which helps regulate blood pressure.

   III.        A third theory (published in a 2005 Hypertension paper) suggests that the genes responsible for regulating nitric oxide are underrepresented in POTS patients. Nitric oxide helps regulate blood pressure and also contributes to the release of noradrenaline, which is the main neurotransmitter for the cardiovascular system. Thus, impaired nitric oxide release undermines the systems that regulate blood pressure and heart rate in POTS patients. Bottom line: POTS patients suffer from impaired nitric oxide production, which hampers blood pressure regulation.

As you can see, there’s no consensus about what exactly causes the low blood pressure in POTS patients. Regardless of the initial mechanism, the treatment seems to be the same: Drink a lot of water and eat a lot of salt. In the next section, we’ll explore why this helps alleviate symptoms.

Why salt increases blood pressure:

Like nearly everything in the body, blood pressure is maintained through a balance of water and certain key minerals, one of which is sodium. This balance is, in part, regulated by the kidneys.

Blood contains water in addition to many other elements, including blood cells, minerals and nutrients. Whenever there is too much water in the blood, the kidneys work to remove the excess and send it to the bladder to be excreted. The process of removing extra water relies on a balance of sodium and potassium, which work together to pull the water across the walls of your blood vessels through osmosis. This process has been examined extensively in medical literature (American Journal of Physiology, 2006; American Journal of Physiology, 2012; Nature Reviews: Nephrology, 2012; Journal of Human Hypertension; 1996).

When you consume a lot of sodium, without consuming a similar amount of potassium, this balance is thrown off, and the kidneys cannot pull enough extra water from the blood. This results in a greater volume of water in the blood stream, which puts pressure on the walls of your arteries and veins, thus raising blood pressure. In a healthy person, this would be a bad thing, but in a POTS patient suffering from chronically low blood pressure, this is ideal.

A caveat: Why it’s important to create an imbalance: The link between sodium and chronically-high blood pressure is hotly contested, partly because one of the most effective methods to counter high sodium intake is to correspondingly increase potassium. The American Heart Association recommends an intake of 4,700 mg of potassium per day, and notes on its website that “potassium is important in controlling blood pressure because potassium lessens the effects of sodium.”

Again, it comes down to the balance of sodium and potassium. If a healthy person consumes too much sodium, which throws off the sodium/potassium balance in the kidneys, causing an increase in blood pressure, that person simply needs to consume more potassium to restore the proper ratio. Of course, in a POTS patient, raising blood pressure to normal levels requires an overconsumption of sodium relative to potassium. Otherwise, the balance is maintained, and blood pressure remains too low.

Takeaways: How to apply this knowledge:

Now that you have a greater understanding of the role salt plays in helping to relieve symptoms of Dysautonomia, we’d like to provide a few steps you can take to put your knowledge into practice.

Eat a lot of salt. This one is pretty obvious, but it’s worth repeating the common advice to consume more salt, which is about 40 percent sodium. Exact recommendations vary, ranging from seven to 15 grams per day. Either way, it’s far less than the American Heart Association’s recommendation of approximately 3.5 grams. The bottom line is that you want to consume more sodium relative to potassium in order to keep blood pressure at normal levels. If you’re consuming the recommended 4.7 grams of potassium per day, you’ll need to really increase the table salt.

Try SaltStick. Of course, all that salt in your food can sometimes be … a lot. Salt has a distinct taste, and it can sometimes get tiring to consume savory foods all day long. SaltStick, which contains 215 mg of sodium in each capsule, may help. There are two major benefits to consuming SaltStick for POTS patients:

      I.        It doesn’t taste like salt. SaltStick Caps are flavorless and easily digestible. Commonly used by endurance athletes exercising in the heat, SaltStick is formulated to enter the bloodstream with as little resistance as possible -- either from flavor or absorption in the stomach. If you are tired of the flavor salt adds to your food, consider supplementing with SaltStick instead. Note that SaltStick is also non-GMO, vegetarian, gluten-free and does not contain any sweeteners such as high-fructose corn syrup. Just the electrolytes you need, in a form your body can easily absorb.

    II.        It provides more than just sodium. Remember, most physiological processes rely on a balance among minerals in the blood. “Salt” and “electrolytes” are both umbrella terms for several minerals, including sodium, potassium, calcium, magnesium and chloride. All of these minerals are important for a variety of functions, only one of which is blood pressure, and consuming nothing but table salt will mean you’re missing out on the other key electrolytes. Because SaltStick contains all of the above electrolytes, you can be sure you’re getting everything you need. This is especially important, given that more than 60 percent of men and women consume less than the recommended daily amount of magnesium, and more than 50 percent do not consume enough calcium.

But wait! Doesn’t SaltStick contain potassium? It’s important to remember that POTS patients want to over-consume sodium relative to potassium. Given that one SaltStick capsule contains 63 mg of potassium, it may seem counterintuitive to use SaltStick as a method for increasing sodium intake. However, this should not be a cause for concern, as each capsule contains more than three times the amount of sodium than potassium.

SaltStick is designed to mimic the profile of electrolytes contained in sweat, which results in a 215 to 63 ratio of sodium to potassium. For the endurance athlete exercising in the heat, consuming this much sodium in relation to potassium is not only acceptable, it’s recommended because this athlete needs to replace electrolytes lost through sweat. SaltStick is not recommended for sedentary individuals precisely because capsules contain levels of sodium that only make sense if you’re sweating in the heat.

However, for the POTS patient who wants to over-consume sodium, SaltStick may be ideal precisely for the reasons listed above, and the inclusion of potassium in each capsule should not be of concern because of the high levels of sodium.

Conclusion

We hope we were able to shed some light on why salt can help relieve symptoms of Dysautonomia. By consuming high amounts of sodium, relative to potassium, patients can raise blood pressure to normal levels, which can help counteract the lightheadedness and other negative symptoms.

If you are tired of salting your food, supplementing your diet with SaltStick Caps may help because each capsule is flavorless and also provides additional electrolytes that keep your body functioning properly.

Important Note: The above should not be construed as medical advice. Contact your physician before starting any exercise program or if you are taking any medication. Individuals with high blood pressure should also consult their physician prior to taking an electrolyte supplement. Overdose of electrolytes is possible, with symptoms such as vomiting and feeling ill, and care should be taken not to overdose on any electrolyte supplement.

Image source: pixabay.com 

SaltStick has offered a discount code for Kind of Broken readers. Use the code "KIND25" and it is good for 25% off all products bought through our online store at shopsaltstick.com. Note that it only applies to customers in the U.S., and it will expire April 30, 2016."

My Comments: 

One of the first suggestions you'll hear when you get a diagnosis of Dysautonomia is to increase your salt intake. It takes some trial and error to find the best way to do this because each person's presentation of the condition is different as well as our tastes. Since there are many other electrolyte products out there besides SaltSticks I wanted to make sure there was information that would compare the products, which is provided in the chart above. 

Many in the Dysautonomia groups I'm in use ThermoTabs, which are cheaper. I haven't tried those. I've only ever used SaltSticks and I've had success with them. I'd love to hear your experiences with other electrolyte tablets or other salt products. 

You can also read my post here I wrote awhile ago discussing some of the other products I use to try to reach the recommended high salt intake for Dysautonomia patients.

Increasing your salt intake is just one piece of the puzzle in managing Dysautonomia symptoms. Dysautonomia International lists many different strategies for managing the condition that are useful. Since Dysautonomia presents uniquely in each individual, it's important to find what works best for you. 

I hope this information has been helpful and I'd love to hear what other strategies you use to get more salt in your diet.

Happy salt-loading!

Why Getting a Diagnosis Matters

I’ve been thinking a lot about why getting a diagnosis matters lately. Because many with Dysautonomia or other rarely diagnosed and invisible illnesses must go through months to years of appointments and testing to get a diagnosis, I have often wondered why we fight for one despite the constant obstacles and hurdles to obtain it. For many illnesses, especially rare and complicated ones, time to diagnosis is typically six years or more.

In 2011, I spent a year going through endless appointments and testing before I finally got diagnosed with POTS. I’ve spent most of the time since then going through endless appointments and testing to figure out what else is going wrong. Comorbities are common for Dysautonomia patients and they can spend years trying to obtain differential diagnoses. Never expect life to be easy, that's for sure!

I’ve mentioned before that about a year and a half ago I suddenly started having difficulty walking. I’ve gone from using a cane, to a walker, to now having to use my wheelchair if I leave house in that short amount of time. I am rarely able to leave the house at this point. Leaving the house is overrated anyway. Except, I miss it.

When I mentioned my walking issue to my doctor’s nurse practitioner when it started she basically told me I was imagining it. Invalidation all over again. So I tried to believe that for many months. But then I couldn’t get around and had to get a cane. I was continuing to lose my mobility rapidly. Hey, every 30 something goes through that difficult period of trying to figure out life while losing their mobility, right? Well, maybe not. I wasn't imagining this.

Having just one random illness no one has heard of is not a thing

I finally saw my neurologist this year. It had been two years between visits (the dude is popular and busy), and I told him what I was experiencing along with other disabling symptoms, he gave me a list of tests I would need to do. My heart sank. He was taking me more seriously but I knew all of those tests and appointments meant there would be no answers for at least another year. That was over seven months ago. I have only gotten progressively worse since then. My couch has a permanent Stefani shaped dent in it. 

While I fought to get the POTS diagnosis, I never dreamed of giving up. I'm in my fourth year of seeking a more complete diagnosis. The drive to give up has been surfacing from my subconscious, but that's not in my nature.

In one of the blood tests, I tested positive for an antibody for Myasthenia Gravis. Loss of mobility, weakness, difficulty breathing, and fatigue are signs of this autoimmune condition. In two weeks I do another test for MG. Maybe a diagnosis? My doctor had me start a medication last week that is used to treat this illness. But still, no official diagnosis. After all this time, will I finally know? But this led me to question why does a diagnosis matter? I am technically already being treated for this and have been learning how to cope with it, so why does the label matter?

Not many people want to be pigeon-holed and labeled. When you are desperately ill, that label is a like a trophy, engraved with the words "I Was Right!" Some never get a complete diagnosis and must suffer the costs of uncertainty long-term, but many of these patients still search for a label for their suffering. A label of an official diagnosis can matter for many reasons.

   Official Recognition and Documentation

Insurance companies and the medical system seem to operate in a very black and white world although there are some of us who live permanently in the grey area in between. There is nothing cut and dry about rare, complex conditions. Yet, a label and diagnosis fits into that tiny square in many medical forms titled “medical conditions" (good luck fitting more than one condition in that square). Having to list a grab bag of symptoms doesn’t seem to hold much weight in their world. Sometimes a grab bag of symptoms leads doctors or medical professionals to instead give a patient a psychiatric label such as “depressed” or “anxiety.” It’s easier than admitting they don’t know sometimes or investigating further. The irony is that depression and anxiety often are an effect of disabling symptoms met with invalidation, not the cause.

This is unfortunately incredibly common for many Dysautonomia patients. There can be serious ramifications from this invalidation. A lack of diagnosis could lead to patients not getting approved for a needed test or treatment option. It could mean a patient cannot get needed accommodations at work. It could impede accessibility to essential services for the chronically ill and disabled.

For those who are so disabled that they are unable to go to work or attend school, an official diagnosis could be a life line. This could help them qualify for disability or other types of assistance. For many, a diagnosis is essential for these practical concerns.

Often when you are chronically ill, you will encounter many doctors who do not know your medical history, you will have to fill out stacks of paperwork, and you will need to communicate to the medically uninitiated (such as employers, family members, etc) your needs. A diagnosis provides a concise explanation. 

Truth really is stranger than fiction. You can't make this stuff up. There’s nothing quite like having an entire Wikipedia page dedicated to your rare condition that you can direct them to when you have a diagnosis. The label leads to vital information and resources. It provides you with a prognosis and information to understand your body. A grab bag of symptoms rarely does. That leads to fruitless internet searches and typing into Google "am I dying?" The label can matter.

 

     Validation (Hey, I’m not just crazy!)

Finally leaving the inhospitable world of uncertainty behind for the more ordered, life-affirming nirvana of diagnosis gives patients validation, especially if they have been told they are wrong by many doctors. It lets patients at least take a break from the endless hamster wheel of diagnosis. This has practical financial, legal, and bureaucratic concerns as I mentioned above, but it also assuages the psyche of those who are desperately ill but have been denied proper care and treatment under the label of mental illness.

When I was finally diagnosed with POTS, I wanted to sing in the streets. Then I wanted to send the primary doctor I had who told me over and over “you’re just stressed” and ended up making me worse a flaming bag of dog poop. Ok, I won’t do that but I still think about it.

After being told by so many doctors that I was wrong, I was finally right. When you get a diagnosis, it's like reading a prequel to your life. The plot holes, disjointed timelines, and weird flashbacks of your story start to make sense.  I have learned that sometimes you will still encounter invalidation and continue to have to “prove” you are ill, yet you can wield a clinical diagnosis like a weapon against these forces. You aren’t wrong. You have proof. The label can matter. 

     Treatment

Perhaps most importantly, a diagnosis can lead to treatment options where there were none before. As with most rare conditions, no specific drug has been created to treat Dysautonomia and POTS as a whole, but there are drugs that treat symptoms such as Midodrine. Drugs are typically used off-label for Dysautonomia and POTS, such as Florinef (which was created for Addison’s Disease). The FDA did recently approve Droxidopa, an Orthostatic Hypotension drug.

It is difficult to treat a patient without a specific diagnosis, so finally getting that label gives a patient some options as opposed to few or none. Even with a probable diagnosis, you can have treatment options. For example, since my doctor suspects Myasthenia Gravis, I have started taking Mestonin and started physical therapy. Proper treatment can provide hope and can lead to a better quality of life. The label can matter.

 

 ***

HuffingtonPost posted an article listing other, innovative avenues for patients with complex conditions to pursue when you are trapped on the hamster wheel of diagnosis. POTS is even mentioned in the article, how about that! Depending on what happens over the next few months, I may pursue #3. 

I have been telling myself over the past year that perhaps a diagnosis doesn’t matter, but that’s the drive to give up talking. It does matter. The process to get there is painstaking to say the least but I have written before that there are ways to navigate it, which is here. 

Even if I also become one of those who must suffer a label-less existence, I know I'm not wrong, and that's what matters the most.

My last trip to Stanford Hospital. Keeping up the good fight

Why does getting a diagnosis matter or not matter to you?

How to Help A Friend or Loved One with Dysautonomia (Or Any Chronic Illness)

One of my goals while being on leave was to post more regularly but I hit a really bad patch the last few weeks and didn’t get this post up sooner. But I’m working on getting back to the upswing and writing, walking a bit, and singing to my cats regularly again. My BFF Carrie Anne recommended this topic to me, and I thank her for it. This post is in honor and in celebration of Dysautonomia Awareness Month. 

Although Dysautonomia is an invisible illness, living with the condition has very real ramifications in the lives of patients and their friends and loved ones. The illness can be so devastating that some are unable to do normal activities and have to rely on a caregiver. Everyone needs support in their lives, but for those who are disabled and/or chronically ill, that support becomes vital. 

For many people, it is difficult to ask for help. In American culture, we are taught to value independence and self-reliance. I have found that many who cope with chronic illness once had lives filled with ambition, over-achievement, and self-determination, myself included. When suddenly you are confronted with a life of dependence and survival, there is grief and frustration, which can be difficult to communicate to others. Yet, having a support network that you can trust and rely on can make all the difference for Dysautonomia patients.

Many may think that helping a friend with chronic illness or disability means helping them perform tasks. What your friend or loved one really needs is often intangible. I decided to ask some of the online Dysautonomia/POTS groups I am on about this topic to get their feedback and almost everyone responded with the intangible forms of support. Whether you are a caregiver, a loved one, or a friend of someone with Dysautonomia, I hope you find this useful:

Understanding

Almost every person who responded to my question included this word. Understanding takes many forms, and I believe for many of those who responded it meant trust—trust that even though the illness is invisible, the disabling symptoms are very real. Your friend/loved one is likely dealing with constant dizziness, fatigue, brain fog, nausea, difficulty standing, difficulty breathing, GI symptoms, fainting, weakness, and obstacles performing simple tasks like cooking, driving, showering, or bending over. Their system is on a constant roller coaster ride of fluctuating blood pressure and heart rate because their body is no longer able to self-regulate automatic functions. Even if you cannot visibly see these symptoms, trust that they are experiencing them. They are dealing with constant frustration because of these symptoms and just want someone to understand how challenging life has become.

Many patients deal with constant invalidation, particularly from the medical community. Almost every Dysautonomia patient has at some point heard “it’s all in your head” or “it’s stress.” If a loved one or friend says these words, that invalidation becomes more devastating and emotionally damaging. Imagine dealing with life-altering or even life-threatening symptoms but constantly being dismissed as just “crazy” or “attention-seeking.” The emotional cost of this is unimaginable and it adds to the magnitude of stress illness already causes.

This condition is complicated and rarely diagnosed, so many Dysautonomia patients have to fight hard to “prove” their illness constantly. It can take many years before a patient receives a complete diagnosis. When a loved one or friend just says the words “I believe you,” all of that stress and invalidation washes away. He or she can now be completely honest and authentic with you. It is a true gift. You can even research Dysautonomia, their subset of Dysautonomia, and even their other conditions to gain a better understanding of the symptoms, prognosis, and treatment.

  

 Patience

Many who responded also mentioned this word. I would list this as my number one desired form of support. Your friend/loved one’s life has been completely altered by this condition. They are often grieving their former life and trying to figure out how to continue to live a full or half-full life while ill and disabled. This means they are unable to do what they once could. This could be true in terms of work, social life, hobbies, family obligations, household chores, etc. This illness can alter every aspect of a person’s life. They need your patience because their capacity to do these things has diminished. They may miss family functions or have to get accommodations at work, and they need your patience and understanding that they would rather be fully present in all aspects of life. They are courageously living life and putting on a brave face.

For me, once I became ill I realized how much I had taken for granted in life in terms of what I was able to do. Going to the store wasn’t a massive undertaking. Trying to clean my house didn’t take all day because of constantly having to rest. I didn’t live most of my life on the couch or in bed. Whatever the severity of the illness your friend or loved experiences, they can no longer take participation in life for granted and they need your patience as they try to still participate despite the physical obstacles. Your friend or loved one can be relatively symptom free for an hour or a day and then suddenly bed-ridden. There is often no rhyme or reason, so they need your patience as they navigate the ups and downs of the illness.

Communication

Communication is essential in any relationship, but it takes on new meaning when your friend or loved one is ill. Last week was one of the worst weeks I’ve ever had and by Friday I needed to go the hospital because I was having difficulty breathing and was unable to walk just a few feet. My husband and I discussed whether it was really worth it to go to the ER or not. We weighed the options together and ultimately decided it was not. These types of communications are typical for caregivers and Dysautonomia patients. Sometimes you are faced with very difficult choices because the cost of this illness is paid out financially, emotionally, and physically. Being able to communicate with each other about these choices and the daily struggles of life can make them more manageable because you can tackle them as a team.

National Public Radio recently did a study on stress and the sources of stress, and they found that the highest forms of stress are related to health. What this data doesn’t state is that chronic illness and poor health can be stressful for all parties involved, not just the patient. Caregivers in particular deal with a lot of pressure and stress. I am no professional, but it may be self-evident that communicating with each other about the challenges of dealing with illness could help alleviate this stress.

There’s an undercurrent of guilt when illness takes over your life because how much it can affect others. I often feel the need to apologize to everyone all of the time. If patients and their loved ones can communicate about their challenges, perhaps the emotional and mental strain of illness can be assuaged for all parties. Dysautonomia patients can communicate their limitations and capabilities in terms of housework or what they will need at a social function so that others can help them. Suffering in silence is not a solution. Listen to your loved one to understand what their needs are and this could limit the frustration that often comes with an invisible illness.

 

      Support

Support comes in many forms, and your friend or loved one needs your support. Because some patients are home-bound or are very limited in their activities, they may not get to see friends or family very often anymore. Stopping by their house or calling, emailing, texting to just ask “how are you doing?” or say something funny can really brighten their day.

This illness can be isolating. Many patients never meet anyone else in person who has the same condition and leaving the house is challenging and exhausting. Feeling alone and misunderstood is common. You can check in once in awhile with your loved one or friend to see how they are doing to show them that you support them and think of them. Everyone needs to know they have a cadre of people cheering in their corner, and this is especially true for those with chronic illness.

 

      Saying the right thing

I think many people are worried about saying the right thing to someone with a devastating illness, but I don’t think “the right thing” exists. I think there’s only honesty. Tell your friend or loved one that you miss them, you think of them, you hope their treatment is going well. That you wish them an endless supply of chocolate and puppy kisses. Tell them you don’t understand their condition or why it has altered their life. I only know the wrong thing to say is “I don’t believe you,” but beyond that just be honest, ask questions, and listen. Your friend or loved one probably doesn’t want more from you than that.

Caregiving and support is a two-way street. For Dysautonomia patients, I think we could read these suggestions as “how to help friends or family understand our challenges” as well. We also need to understand, be patient, communicate, be supportive, and forget about saying the right thing. If medical professionals are struggling to crack this strange condition, we can’t expect family, friends, or strangers to fully grasp it either. We’ll get through this together.

I hope I covered most of how to help your friend or loved one with Dysautonomia but feel free to suggest more

For more information on Dysautonomia, visit the Useful Links page on this blog

 

Authenticity

Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, and maybe sometimes drawing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that is happening around me. I want to make my experience useful for others on this blog, but I am still figuring this one out. I know others who are ill or disabled or face other challenges must struggle with living authentically. This is a strange ride indeed.

I have realized that I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bed-ridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else. 

I’ve been pretending to be one of them—living among the well who talk about traveling, doing yard work, or going places after work. Pretend to not be on an endless cycle of suffering and needing to go to the hospital. Pretend to not have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach. 

But as I have been getting progressively worse this year, I have maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the will power to keep up the charade. 

This is a good thing because now I can try to live a more authentic life. I have been lying to everyone and to myself for a long time—lying about what I am really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. Bullshitting is not really my deal. But I can put on a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough that maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s ok. I still use my polite words, “please” and “thank you.” I'm grateful for the friends and family who have shown their true colors and stood by me and for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means doing very little driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family, myself about what I am able to do moment to moment. I am going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I'll use my wheelchair when I should. I'll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.

It means that I no longer care so much what others think, and that is incredibly freeing. I can deal with the stares when I use my walker. I can now pluck up the courage to say “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast and I’m going to stop fighting it so hard. It means suffering in silence less and maybe becoming in tune with the world around me once again.The future is very uncertain but I'm getting more comfortable with that. I am gaining a lot of life XP in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I am hard core. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids, salt, and chocolate close by.

How do others live authentically despite adversity?