10 Ways That Living with a Chronic Illness is Like Training for the Olympics

Update 8/18/2016 – This article was featured on  TheMighty.com website on August 9, 2016, which is such a huge honor. Thank you all for your continued love and support.

If you’d like to read the shorter, edited version of this post on The Mighty’s Website, please visit https://themighty.com/2016/08/how-training-for-olympics-is-like-having-a-chronic-illness/


As a patient who has not only been diagnosed with multiple rare forms of chronic illness and as a former athlete that competed on the national level in swimming,  I feel that I offer a unique perspective as to how some aspects of day-to-day life are quite similar between the polar opposites of having a chronic illness and training to compete in the Olympics. Here are some of the

Top 10 Ways That Living with a Chronic Illness

is Like Training for the Olympics:

10. You’re friends and family don’t understand why you never hang out with them. 

Obviously, training for the Olympics requires a great deal of  time and dedication. In an effort to become one of the top athletes in the country,  sacrifices have to be made and one of the first things to go is generally your social life. Spending months at a time at training camps or traveling for competitions takes you away from your family and most days it was far too tiring to even think about going out and socializing with my friends, let alone actually doing it.

b78adbfe0a7f2721f20bde2044224689

Now that I have a chronic illness, there are days when I can barely walk to the bathroom by myself, let alone take a shower. I’m lucky if I make all of my scheduled doctor appointments or medical tests even though I have assistance in getting there since I can no longer drive. Having a social life on top of it – that’s honestly asking too much of myself. The majority of people can’t understand how truly difficult it is to do the basic things that many people take for granted, such as going to the grocery store or cooking dinner. When you become sick while still young, though, the discrepancies between living a so-called normal life and that of “the sick life” are far more dramatic in comparison. Friends just simply don’t have the capacity to comprehend why their formerly “fun friend” is suddenly stuck at home on the couch. As they say – you don’t really get it until you get it.

9. You’re always tired, regardless of how much you sleep. 

3410eea79eaaabc721d3692d363f1361

When you’re working your body hard, either to make your Olympic dreams come true or to merely make it through the day, fatigue seems to have a tendency continually build up to the point where you don’t know what it’s like to NOT feel tired anymore. No matter how much you sleep – it could be 8 hours, 12 hours, or 2 hours – it all feels the same.

Burnout_and_OVertraining_Syndrome

Professional athletes are likely to suffer from a condition called Overtraining syndrome (OTS) if they work themselves too hard over a long period of time. As Kreher & Schwartz (2012) explain, “athletes train to increase performance. Performance increases are achieved through increased training loads. Increased loads are tolerated only through interspersed periods of rest and recovery—training periodization. Overreaching is considered an accumulation of training load that leads to performance decrements requiring days to weeks for recovery. Overreaching followed by appropriate rest can ultimately lead to performance increases. However, if overreaching is extreme and combined with an additional stressor, overtraining syndrome (OTS) may result. OTS may be caused by systemic inflammation and subsequent effects on the central nervous system, including depressed mood, central fatigue, and resultant neurohormonal changes” (p. 128). However, depending on the pathophysiology and etiology of the condition, a number of treatment options are available, including hormone therapy, cognitive or physical therapies, stress management, and prolonged periods of rest.

Prolonged fatigue in chronic illness generally comes from the medical condition itself but other factors that come along with  the illness can also influence a person’s physical, emotional, and social lifestyle in a way the creates additional fatigue as well. For example, sleep patterns can be affected by conditions like dysautonomia or autoimmune disease. While there are some strategies available for managing the fatigue that result from the various conditions of having a chronic illness or pain, once again it really just depends on the type of condition that is causing it. Delegating duties to friends or family members, practicing stress-reducing technique or and good sleep behaviors, and taking a lot of breaks throughout the day can help to a degree. In most cases, though, chronic feelings of fatigue cannot be cured or treated unless  the underlying condition is cured or goes into remission.

53a8c388ac2f138f492cbf4a7b7474d7

8. You’re usually awake to see the sunrise.

Olympians often start training in the early hours of the morning, long before the rest of the world is even awake.

d17a6e4f92221d176d70e261d79fdfaa

Those with a chronic illness are often awake this early in the morning as well – mostly because they haven’t gone to bed yet due to high levels of pain or because they spent most of the evening lying on the bathroom floor.

7. You’ve become really good at hiding how you  really feel.

e4883c2867bf1ccbbff33e4b22a48646

In order to be seen as a “good sport”, athletes sometimes have to cover their disappointment in their performance by shaking the hands of their opponent.

bfc7e1948b35cf0bd887e7a658bd63c8

Those with chronic conditions tend to hide their illness by responding that they’re “fine” while they keep a smile on their face, even though they may feel like they’re dying on the inside.

6. It’s just like having a full-time job but without the weekly paycheck.

Potential Olympians train both day and night to achieve their dreams of competing in the Olympics. When I was in training, I’d have practice in the morning before school, strength and/or weight training immediately after school, and then practice again in the evening before I went home to do homework and rush off to bed. Also, I either went to practice or to a competition on both days of the weekend as well.

As a chronic illness patient, I spend most of my time calling doctors offices, faxing recordings, fighting insurance companies, researching treatment options, and recovering from various surgeries or treatments that are often difficult in and themselves. I also spend a lot of time going from one appointment to another, shuffling from one specialist to another, going through this medical test or that treatment plan, one hospital visit after another hospital – it’s exhausting.

5. You make plans way ahead of time.

a8f03fb7f04999d5a2c127bcd7f26966

When you’re training for the Olympics, everything is planned months ahead of time – sometimes even years in advance. This includes everything from what competitions you’ll compete in and the travel plans to go to such events to the training schedule you follow throughout the year.

Making plans when you have a chronic illness also requires a lot of preparation. As a rule, I try not to commit to anything unless I absolutely have to. On those rare occasions that I do make plans to hang out with  friends or family, every detail is planned out way ahead of time and every potential or possibility needs to be accounted for. However, considering that most of my symptoms can change substantially in the blink of an eye, most efforts to plan anything are basically futile. More often than not, I have to cancel these plans at the last-minute anyways – leaving me to feel guilty or worthless because of my illness.

4. Proper nutrition and hydration are imperative to your ability to function.

phenomenal-phelps-5

One of the most important elements of training for the Olympics is good nutrition. If you want to reach your peak performance, it’s import to follow a well-balanced diet. It’s  also important to stay hydrated both before and after practice so that you don’t become ill or injured simply by losing important nutrient and electrolytes from pushing your body passed its  physical limitations. According to an article in Men’s Fitness Magazine (2014), “for Olympic-level performance and off-the-chart energy, you must eat properly including eating a breakfast of complex carbohydrates and lean protein, then eat again every 3-4 hours and within 90 minutes of working out. Consume half your bodyweight in fluid ounces of pure water and if exercising intensely or for long duration, consume a sports-drink to replenish electrolytes” (para. 2).

d227ac67b8a14bfef3ef22c7dffb867a

Similarly, some of my diagnosed conditions require extreme effort and dedication to dietary guidelines in order to thrive. For instance, my vascular surgeon identified that has malnutrition after years of not really eating due to a combination of pain and early satiety caused by a rare condition called Superior Mesenteric Artery Syndrome (or SMA Syndrome). In order to survive the life-saving surgery that I need in the upcoming months, I was sent to a dietician to bring up my nutritional blood screens so that I could have the surgery to fix the compression of my SMA, as well as the other three rare vascular compression syndromes I have as well, including Nutcracker Syndrome, May-Thurner Syndrome, and Pelvic Congestion Syndrome. However, because the third portion of my duodenum is being compressed by the SMA, food becomes obstructed as it tries to move into my small intestines.Therefore, the dietician had to be somewhat creative in prescribing a diet of foods that could move past the compression. Currently, my daily dietary regimen consists of:

  • Multiple “shots” of either a protein shake or Carnation Breakfast Essentials (I do “shots” because I can’t drink 8 to 16 oz a day in one or two sittings without getting sick).
  • 2 small jars of organic baby food – levels 1 and 2 only.
  • 1 pouch of pureed baby food
  • 2 tablespoons of peanut butter.
  • 2 high-calorie coffee drinks from Starbucks (to maintain/gain weight).
  • 1 yogurt packet.
  • As many pretzels, crackers, or chips I can handle.
  • Popsicle or Italian ice – only if I can manage it as well.

For another condition, Postural Orthostatic Tachycardia Syndrome (or POTS Syndrome), I require a high intake of  both water and electrolyte drinks (e.g., Pedialyte) to help increase blood volume and prevent dehydration, along with a high sodium (or salt) diet to keep my blood pressure  high enough so that I don’t faint multiple times in a single day .

All day long, all it feels like all I do is eat and count calories. One bite here, another sip there – it’s honestly exhausting! Especially when you spent years actively avoiding food since it was the source of so much pain.

3. You prepare yourself to be strong mentally.

In any form of competition, you have to be strong not only physically but mentally as well. According to an article by Sports Psychology Today (2011),”mental preparation helps athletes achieve a focused, confident and trusting mindset to help them compete at their highest level” (para. 2). While some athletes use meditation, others prefer to listen to music for motivation. I always preferred visualization when I was able to compete. As Handel (2012) explains, “in preparation for a game, athletes will run through different situations in their imagination as a kind of mental rehearsal. This way, when they are confronted with the situation in real-life, their mind is already primed to respond to the situation in an effective way…Contrary to common misconceptions, visualization is most effective when athletes focus on the process rather than the outcomes” (para. 11 and 13)

tumblr_njwb44kinJ1u4f7gyo1_500

Essentially, I use this very same strategy to manage life as a professional patient as well. After years of doctors telling me that my symptoms were caused by anxiety or depression, I mentally prepare for all appointment by preparing notes and deciding what I want to say ahead of time. Then I formulate counter-arguments based on current medical research to make sure that my concerns are taking seriously. Sometimes I need to prepare myself mentally before I gain enough courage to go ahead  with a certain medical test or an experimental treatment plan simply because it makes me nervous for whatever reason. There are some days that my symptoms can be so bad that mental preparation becomes necessary just to make it out of my bed.

2. You can handle high levels of pain like a champion.

For the most part, nearly every competitive sport out there involves feeling pain in some, way, shape, or form. For instance, pain and injury could result from overworking yourself during practice or you could suffer a really bad head injury during competition. Although I never personally got severely hurt in competitive swimming, aside from the ocassional ear infections and a pulled muscle or two, other sports I did over the years did result in extreme forms of pain and injury. In cheerleading, for example, I suffered from 6 concussions, a broken nose, a fractured jaw, and two broken ankles – all in the span of a single season. Even with broken bones, though, I still performed  because I was the captain and I didn’t want to let my squad down.As the old adage goes, no pain – no gain, right?

It is the same with chronic illness. Often we feel pressure to do things we know we shouldn’t do but we do anyways because we either feel guilty or think that it’s an expectation. Additionally, since we experience high levels of pain almost each and every day, we have learned to handle our pain much better than the average person. When I started receiving Botox injections for migraines, for instance, my neurologist commented about how I was her favorite patient because I didn’t even flinch once as she injected needles into various places across my face, forehead, and neck. I’ve also had nurses surprised that I would barely move when they would blow a vein during a catheter placements or the fact that I didn’t cry when I had a biopsy taken from my scalp without any form of sedation (not even a local), which was later cauterized with colloidal silver instead of the normal placement of sutures. Really, it’s not that you don’t feel the pain anymore – it’s just that you handle pain better now because you’ve dealt with it for so long.

1. There’s strong camaraderie between you and your team members/fellow spoonies.

When the entirety of your life is spent training and competing, often the only people you get to see regularly is your fellow team members. Basically, they become your new family since you spend every waking moment together and they understand what you’re going through.

add-text-5

When you’re sick, it can be hard to relate to people who are healthy. We feel judged by others because of our illnesses and most people can’t understand what it’s like to be chronically ill. This includes the majority of  our closest friends, family members, and doctors as well. The only people who get it are other spoonies or warriors that have gone through what you’ve gone through, and therefore  understand where you’re coming from.The chronic illness community offers a lot of support to members because we all know what it’s like to be alone or afraid. We’re so tight-knit that we have developed our own language, laugh at our jokes, and establish rules that most outsiders are unlikely to be conscious of unless they’re given an explanation. Even then, it’s hard to understand because they have experienced as much as we have. In a way, it makes up for all that’s been lost to chronic illness. Like a secret society, but one that nobody chose to join by their own accord – it’s simply involuntary recruitment into this life.



References:

Edger, M. (2011). Five tips for mental preparation. Sports Psychology Today. Retrieved from http://www.sportpsychologytoday.com/youth-sports-psychology/five-components-of-mental-preparation/

Men’s Fitness Magazine (2014). Fitness Secrets of Olympic Athletes. Retrieved from http://www.mensfitness.com/training/pro-tips/fitness-secrets-of-olympic-athletes

Handel, S. (2012). The Emotion Machine. Retrieved from http://www.theemotionmachine.com/4-mental-exercises-olympic-athletes-use-to-gain-that-extra-edge

Kreher, J.B. & Schwartz, J.B. (2012). Overtraining Syndrome: A practical guide. Sports Health, 4(2), 128-138. doi:  10.1177/1941738111434406

What Is The Best Way To Cope With Pain?

Pain is defined as being an experience of both physiological and psychological discomforts marked by unpleasant or uncomfortable sensory symptoms resulting from some sort of damage or injury (Gurung, 2014). The origin of pain can come from a variety of sources and there are numerous ways that individuals can cope with pain, consisting of either psychological or biological interventions. Certain pain management therapies may work better than others depending on the source and duration of pain, as well as an individual’s tolerance or threshold for the pain. According to Gurung (2014), there are three primary classifications of effectively managing pain: physiological treatment, psychological treatment, and self-management techniques.

Physiological techniques for managing pain, for instance, often involve the use of pharmacological or chemical management methods, traditional or holistic treatments (e.g. acupuncture), and surgical interventions. Medicinal therapies are generally one of the first approaches used for pain management, particularly if the ailment is caused by acute pain triggers (e.g. broken bones, sprains, illnesses, etc.), and generally comprise of pharmaceuticals called nonopioid, opioids, and adjuvants. Adjuvants are medications that are prescribed to manage pain but are not solely listed for that purpose. These medications are used primarily because they have shown some effect in helping to manage pain, although they may elicit different physiological responses. Some common example of adjuvants includes benzodiazepines, corticosteroids, antidepressants, and local anesthetics (Gurung, 2014). Nonopioids, on the other hand, include many of the over-the-counter pain relievers, such as ibuprofen, aspirin, or acetaminophen. According to Gurung (2014), “these medications act locally, often at the site of pain” (p. 291) and provide quick-acting, short-term relief in milder forms of acute pain. However, nonopioid drugs are generally not recommended for continued use due to the many long-term side effects associated with these drugs and their inability to maintain pain relief over time.

A stronger category of medication, known as opioids or narcotics, are much better suited for more severe pain management, particularly for those undergoing a surgical procedure, have suffered a severe illness or injury, or are living with a chronic or debilitating illness. Some well-known examples of opioids include oxycodone, codeine, morphine, and methadone. Opioids are the drug of choice for moderate to severe pain, given their level of effectiveness. Morphine, for example, works by binding to the “receptors in the periaqueductal gray area of the midbrain and produces pronounced analgesia and pleasant moods” and mimics the body’s natural response to coping with pain (Gurung, 2014, p. 291). However, opioids come with their own set of side-effects that are often much more severe than nonopioid medications. For instance, there is a much higher risk factor for overdose or addiction, and individuals who take opioids for chronic pain management often build up a large tolerance to these types of medications. Therefore, in order to gain the same benefit, patients also need to increase the dosage of the drug which places them even further at risk for the potential of overdose or addiction. Nonetheless, the controversy over the effects of long-term opioid use is a hot topic of debate in both the medical and chronic illness communities.

Still, there are a number of physiological techniques, outside of medications, that also assist with pain management strategies. Some examples include acupuncture, surgical interventions, and the use of either hot and cold compresses (and even alternating the two). Acupuncture, for example, works to manage pain by releasing blocked energy associated with pain and has been used in Traditional Chinse Medicine for years (Gurung, 2014). Alternately, surgical treatments can also help in decreasing levels of pain by removing the conduction of many of nerve fibers throughout the body that directly or indirectly transmit pain signals to the brain. However, while surgical approaches typically provide relief of pain for a period of time, improvement does not seem to provide a long-term cure since nerve fibers’ have the ability to regenerate. Still, while the majority physiological techniques offer relatively good methods in managing acute forms of pain, psychological strategies for the management of pain are likely to be more effective for handling chronic forms of pain.

Research into various psychological techniques shows that many of the pain pathways found within the human body are directly linked to the brain, ensuring that pain is very much a psychological process in addition to being a physiological one as well. A person’s mood can greatly impact how individual’s cope with or experience pain and altering one’s cognitions about chronic pain is, therefore, detrimental to obtaining control of individual levels of pain. For instance, when a person is undergoing chronic stress or is depressed, they are likely to feel more pain. According to Gurung (2014), “negative mood states can lead to biased forms of thinking. These cognitive biases can accentuate the feelings of pain and need to be modified” (p. 294).  Often, these behavioral modifications come from the use of psychological techniques (e.g. hypnosis, distraction methods, and relaxation techniques) in a similar manner to the practices associated with coping skills for dealing with stress. Distraction techniques, for example, are helpful in handling pain because it diverts attention away from the problem, similar to stress management techniques, and includes the use of some common practices like guided imagery, meditation, or watching television, reading a book, or talking with a friend over the phone. Likewise, biofeedback is also helpful in identifying pain triggers through observing physiological responses to pain through the use of machines or computers and then teaching relaxation techniques in order to assist individuals in gaining control of their physiological reactions to pain.

Although both psychological and physiological approaches to pain management procedures are helpful in their own ways, neither necessarily define the “best method” for handling pain—at least, not alone. Essentially, the primary problem in defining a standard method of pain management is the fact that the experience of pain is mostly subject. Although tests are available to measure specific fragments of pain, currently there is no exam available that can objectively measure pain with any amount of accuracy. Also, since both physiological and psychological factors influence the involvement of pain, it’s hard to distinguish which variables are positively or negatively altering elements of pain and individual levels of pain can change day-by-day. Given the number of factors involved, perhaps a better method for managing pain is to utilize a dual approach by combining both psychological and physiological techniques.

One way to combine both pain management strategies is through a technique known as self-management, which has been particularly supportive of individual’s living with chronic episodes of pain. Self-management programs are defined as “treatments for pain relief that make the patient with chronic pain the one with the most responsibility for making the change rather than the doctor or the health professional staff” (Gurung, 2014, p. 452). Self-management programs for chronic pain are effective because they focus on the emotional aspects of pain, outside of the physiological response, by teaching patients to change their thoughts or behaviors to better cope with their pain – mainly by focusing on various strategies to improve one’s overall quality of life. According to Gurung (2014), the main goals of self-management programs are to:

  1. Provide skill training to divert attention away from pain;
  2. Improve physical condition (via physical reconditioning);
  3. Increase daily physical activity;
  4. Provide ways to cope more effectively with episodes of intense pain (without medication);
  5. Provide skills to manage depression, anger, and aggression; and
  6. Decrease tension, anxiety, stressful life demands, and interpersonal conflict. (p. 297).

Gender Bias of Pain:

It’s important to point out a very significant problem currently plaguing patients across the country — the gender bias in medicine. Although this problem is not exclusive to pain management, the gender bias in medicine is alarming because many women are often left without the proper care essential to maintaining a good quality of life.

It’s become far too common that women’s complaints of pain or illness are minimalized by the medical professionals they turn to for help, often implying that women are overly dramatic in their interpretations of pain. Doctors often label many of the pain symptoms found in women as being psychosomatic or “all in their head” when a diagnosis is not easily obtained. This bias becomes even more evident in women who have chronic pain, who continue being called a “drug-seeker” when asking for pain relief. “Women are more likely to have chronic pain conditions that are more difficult to diagnose and treat (TMJ Disorder, fibromyalgia), and in many cases, these are treated as mental or hormonal rather than as a disease or disorder” (Stacey, 2012). Likewise, many doctors still foster the ideology of the gender bias by suggesting that women are affected by pain harder than men.

According to Gurung (2014), “women reported significantly higher pain in most categories with the most significant differences in patients of the musculoskeletal, circulatory, respiratory and digestive systems, followed by infectious diseases, and injury and poisoning” and “men report less pain, cope better with pain, and respond to treatment for pain differently than women” (p. 274) However, at least in their initial presentation, these statements are somewhat misleading. At best, research is relatively and widely varied. Recently, an article I came across by Dusenbery (2015) called Is Medicine’s Gender Bias Killing Young Women? described this phenomenon in detail:

This pervasive bias may simply be easier to see in the especially high-stakes context of a heart attack, in which the true cause usually becomes crystal clear—too often tragically—in a matter of hours or days. When it comes to less acute problems, the effect of such medical gaslighting is harder to quantify, as many women either accept misdiagnoses or persist until they find a health care provider who believes their symptoms aren’t just in their head. But it can be observed indirectly: In the ever-increasing numbers of women prescribed anti-anxiety meds and anti-depressants. In the fact that women make up the majority of the 100 million Americans suffering from (often under-treated) chronic pain. In the fact that it takes nearly five years and five doctors, on average, for patients with autoimmune diseases, more than 75 percent of whom are women, to receive a proper diagnosis, and that half report being labeled “chronic complainers” in the early stages of their illness. Then there are the diseases, like chronic fatigue syndrome and fibromyalgia, that exist so squarely at the overlap of the Venn diagrams of “affects mostly women” and “unknown etiology” that they’ve only recently begun to be recognized as “real” diseases at all.  (para. 20)

There are some valid explanations for why pain across gender is inconsistent. In a study by Hamberg, Risberg, Johansson, & Westman (2004), for instance, it was found that “proposals of nonspecific somatic diagnoses, psychosocial questions, drug prescriptions, and the expressed need of diagnostic support from a physiotherapist and an orthopedist were more common with females” (para. 3). However, laboratory tests, physical examinations, diagnostic testing, and pain management were offered to men more often than it was for women patients. Additionally, the differences offered in treatment could result in the many inconsistencies demonstrated throughout the literature as to how men and women are different when it comes to pain. Furthermore, the gender difference may be the direct result of our modern culture expect men and women to experience pain. We often encourage women to express their feelings about pain, yet make them feel like they are crazy or are behaving like a hypochondriac in following the expectation. Alternately, society tells men to hide their emotions. So of course, it’s easy for “science” to say that women have more reported pain than men because females are more likely to confess about their experiences of pain, skewing the results and furthering the gender bias. At the end of the day, I do believe that Dusenbery (2015) stated it best by saying, “call me crazy—hysterical, even—but I don’t think you should have to feel that empowered just to receive proper medical treatment” (para. 20).

References

Dusenbery, M. (2015). Is Medicine’s Gender Bias Killing Young Women? Retrieved on Feb 16, 2016, from http://www.psmag.com/health-and-behavior/is-medicines-gender-bias-killing-young-women.

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

Hamberg, K., Risberg, G., Johansson, E.E., & Westman, G. (2004).  Gender bias in physician’s management of neck pain. Journal of Women’s Health & Gender-Based Medicine, 11(7): 653-666. doi: 10.1089/152460902760360595.

Stacey (2012). Is There Gender Bias in Pain Management? Retrieved on February 16, 2016, from http://www.tmjhope.org/gender-bias-pain-management/


To find out how you can receive FREE online therapy to manage chronic pain, please visit the following article on the Better Health website:

https://www.betterhelp.com/advice/therapy/get-free-online-therapy-should-you-use-free-counseling/

Just stand still, look pretty.

But you don’t look sick…

My illness is only invisible because I decide what you can and can’t see.

Much of living with chronic illness is hidden from the outside world,

in an attempt to be as normal as physically possible.

So unless you live it yourself, you’re blind to it.

But nothing is truly invisible if you make a conscious choice to really open your eyes.

0000000000000000

So what does invisible illness really look like then?

Allow me to show it you.


You can see invisible illness in the things I do each and every day.

1c326a396515596e79b008b9456778fc

Visible in the adjustments I make just to do everyday things.

70ab88aef0694b8d717ff1f78676dca1

8a1dc834313780223d317b6c55abddc5

You can see it on the pages of my planner in which I write every appointment and daily to-do list.

wpid-20150711_201031-1.jpg

wpid-20150711_201441-1.jpg

Or in my notebook that I take everywhere with me.

Otherwise, I will forget everything.

wpid-20150711_211341-1.jpg

wpid-20150711_211411-1.jpg

1067d8b3fedb6bbd84acc3d444278e0b

Or the time I spend doing medical research,

hoping to find an answer for what the doctors can not find.

wpid-20150711_211354-1.jpg

wpid-20150711_211511.jpg

You see it in the amount of caffeine I drink, just to stay awake.

wpid-20150711_210847-1.jpg

b0f190634d3bb10e9318173c2d459fe8

In how long it takes me to do the housework and laundry.

0f4d16e870650fb9586b85e88541048d

9c5553a9065f15194e2a0851b074962a

Or how hard it is just to run simple errands.

bbfd5aa65e095b4f3aa8422029f81e24

You can see it sitting on my bookshelf.

wpid-20150711_203834-1.jpg

In number of times I wash my hands in a day.

50d25050f92789f0d3993ab8d07bbcdf

Or the fact that a good portion of my time is spent hidden away in a bathroom.

5dca3db29f9baea1277ee0a4d11dfd8f

Illness doesn’t leave room for hobbies, much less the things that are fun.

26fac35718128ddbf7dfd9cf99484f27


Invisible illness is seen in the never-ending doctor’s appointments and medical testing.

fb482d63a88dd4f0a4fd93e6193d5f59

cab7806b326af715c0ed14c997e393df

fb482d63a88dd4f0a4fd93e6193d5f59

Or the procedures I’ve had, despite knowing whether they will work or not.

8b9c31cecb8d73d7ff071958451d97a0

1b30cbd1759c7813f10fd91a3a06b3b2

You see it in all the blood draws the doctors run regularly, trying to get a diagnosis.

bdcc476def75ff1a5372c2bb1695e087

e12be4793ca5d523de639436dc587036

And the therapy appointments I attend just make sure I am not crazy.

e7338f388c732c93d399b94c2ef9680d


You see invisible illness in all the paperwork I have to complete and keep track of.

351f842788a8a7bb451897ef7b520ccf

In the two three inch binders that hold my medical records

which I need to bring to every doctor’s appointment.

admin-ajaxwpid-20150711_210552-1.jpg

-one for clinic notes, one for labs/testing-

You see it in the summaries I put together to keep all my doctors on the same page.

wpid-20150711_210701-1.jpg

Or in the advanced directives, living wills, and Do Not Resuscitate orders.

wpid-20150711_210709-1.jpg

cab702cfc6f1a413851e1aa84badd1bd


My illness is clearly visible in the medications I take  every day.

  admin-ajax (1)

e40add2034fea68b654b0479dbe4a1ea

You can see it in my oxygen concentrator and tank that help me to breath.

wpid-20150709_134934.jpg

In the duo-nebulizer that I keep at home

just in case an attack comes on and I can’t get to the clinic in time.

wpid-20150711_210427-1.jpg

 In my monitoring tools -in my blood pressure cuff and oximeter.

wpid-20150711_204729-1.jpg

In my heating pad and humidifier.

wpid-20150711_204834-1.jpg

wpid-20150711_210504-1.jpg


My invisible illness is hidden deep inside my travel case,

full of emergency medications and supplies for when I leave the house.

wpid-20150711_210928-1.jpgwpid-20150711_211016.jpg

And in the lessons my husband has had to take to administer medication

or help me in case I can’t help myself.

001


You see my invisible illness in the symptoms I try to conceal and hide.

wpid-20140527_053934.jpg

wpid-20150428_201626.jpg

wpid-20150428_201709.jpg

wpid-20150318_222914.jpg
wpid-20150618_080706.jpg


Just because it’s not easy to see, doesn’t mean it’s not there.

Do I look sick enough now?

wpid-20150711_210251.jpg

Because this is how I look at home, behind closed doors.

In real life, invisible illness is not so invisible afterall.

Remember that the next time you judge someone,

when you don’t believe they are as sick as they make out to be,

when you make them prove how sick they truly are,

or say “but you don’t look sick…”

cropped-wpid-quotestags_android_app_1074720-1.jpg