Vertigo #AtoZChallenge

Vertigo     #AtoZChallenge

During the month of April this blog has focused on a number of general topics as they relate to chronic illness. Today we are going to touch on a specific issue, because all of the other topics I chose for the letter V just didn’t sit well with me. So in order to remain relevant and in an attempt to touch on something new each day, we will delve into the dizzying world of vertigo.

Vertigo can be an illness in its’ own right. It can also be a symptom of many other illnesses, and even a side effect of some medications or surgeries. I’ve experienced vertigo on many levels throughout my life. I’ve experienced severe disabling vertigo many years ago as a result of what I was told was Meniere’s Disease.

To this day I’m not sure what was worse, the vertigo itself or the side effects of the medication. While the medication is specifically designed to treat vertigo, the dosage had to be titrated to such a high and round the clock dosage that it made me feel similar to what I suppose a zombie feels like. I was so groggy all the time and felt like I was living in a deep and all-consuming fog. Add to that the fact that it didn’t eliminate the vertigo and it was not a very pleasant time. Eventually after lots of time and physical therapy it seemed to resolve itself. Although to be honest, even my physician could not explain how or why.

Several other times I experienced acute onset vertigo as a result of what I’m told was an inner ear disturbance. After receiving specialized therapy at a local physical rehab hospital to treat what they called crystal formation in my inner ears, it too eventually resolved. Each time I experience it I forget just how debilitating even mild vertigo can be. Driving is nearly impossible. Just getting out of the recliner to walk to the bathroom can be a nearly insurmountable task.

Most recently, after major neurosurgery to repair a spinal cord injury in may neck, I once again experienced vertigo. More moderate this time than the severe vertigo of many, many years ago. But still significant enough to further affect my balance and ability to be mobile under my own power. Every time the therapists would try to get me up out of the wheelchair to attempt walking with the walker, I would get severely dizzy. Sometimes to the point of things beginning to get dark and I would be placed safely back in the wheelchair until it passed. Other times I could counter it with relatively low doses of the medication, and techniques taught to me by my therapists. Needless to say it made recovery a bit of a challenge.

Add to the dizziness, fatigue from the medication, and I think the very worst part besides mobility being affected, was the nausea.  Unrelenting, spontaneous, and severe nausea. I can’t count the number of times my nurse had to be summoned to the physical therapy area to give me a drug to attempt to counteract the nausea. This too didn’t always work, but at least it helped.

The point is that vertigo, regardless of the cause can be anything from a minor nuisance to a debilitating problem. If it is in conjunction with another illness or injury, the effects of vertigo can be greatly enhanced and even more troublesome. While there are medications designed to alleviate the effects of vertigo, it may be so severe that you wind up having to ingest multiple medications to counter it. In the process it is a known risk that you can compound the side effects of many of these medications, further complicating treatment and your quality of life while battling vertigo.

Have you or someone you know suffered from vertigo?  What seemed to help mitigate the effects of vertigo? How did you cope with the vertigo and associated side effects of the medication(s)? Please share your story with us below.

Uncertainty #AtoZChallenge

Uncertainty     #AtoZChallenge

Much to our dismay, when we are faced with a chronic illness or worse yet multiple chronic illnesses, we often find a world of uncertainty. To our surprise, physicians are not the all-knowing omnipotent beings they were purported to be a few years ago. As diseases progress it sometimes seems more common to wind up with a diagnosis of exclusion rather than a diagnosis based upon a factual evaluation.

While there are frequently standards for diagnosing an illness or disease process, they are most often strictly defined by the insurance or regulatory agencies. Some diseases may not present identically across a population. It is my opinion that while guidelines for diagnosis are understandably necessary, we have systematically removed the ability of our physician providers to draw their own conclusions based upon symptomology and assessment.

This regulation in the field of diagnosis is necessary to protect us and guide our physicians from making false or unsubstantiated diagnoses. However, by requiring such stringent diagnostic criteria we have removed their ability to individually evaluate and treat us. It has become more common for a physician to tell us that while they think we may have a particular diagnosis, they are unable to conclusively make the diagnosis. This is because we may not meet the stringent criteria set forth by some regulatory commission or agency.

Over the last year to year and a half, I have been told I have a very serious neurological condition, that is likely progressive. I’ve been told this by numerous physicians. At least one specialist was absolutely unequivocal of this diagnosis. I was referred to a very large teaching hospital who specializes in this disease. After a few months, it was time for my appointment. After traveling over an hour to get to the appointment, I thought I was finally going to get the answers and treatments I was repeatedly told I needed.

Much to my dismay, I was very, very wrong! The outcome was that while it could, in fact, be that suspected illness, this specialist was hesitant to make the final determination. While there are concurrent factors that could influence the diagnosis, there were not any that would preclude the diagnosis. Or so I had been told previously. After an interview with a Nurse Practitioner, she went to consult with the physician.

When he came in the exam room, he was extremely pleasant but proceeded to crush my world. He proceeded to explain that while the symptoms and diagnostic studies could be attributed to said neurological illness, that he was unable to make the diagnosis at that time. He went on to explain, that essentially, we had to wait six to twelve months, then re-evaluate the diagnostic studies to see if things had gotten worse consistent with the suspected diagnosis. At that time, if things had progressed to a severity required to make the diagnosis, we could begin treating it with medication. I was so flabbergasted I could barely speak.

Please do not misunderstand me. I do not want this diagnosis. But I had been told for nearly a year that it had to be what is wrong with me. That was after well over a year of uncertainty. Multiple physicians, some specialists, had told me I had this disease. Yet none were willing to make the official diagnosis in order for me to start the medication which has been proven to slow the progression in some patients. I was crushed because the medication has been studied to be most effective in the first two years after onset. I am already past the two-year mark. If I wait another six to twelve months, I will most certainly be further behind the eight ball than I was. What does that mean to my prognosis?

Because I did not meet the “gold-standard” of required items to solidify the diagnosis, he would not make the diagnosis. Gave me a bunch of things that must be ruled out over time. Things that other physicians had already told me were ruled out. While the gold standard is a guideline, not a hard and fast rule of diagnostic criteria, I was informed that there is no room for judgment in the clinical criteria. Isn’t judgment the definition of a doctor’s evaluation of your situation? It is the physicians’ judgment as to what is wrong with you. It is their judgment as to how to best treat your illness.

So I left the appointment with even more uncertainty than when I arrived, and near hopeless in terms of finding a diagnosis and achieving effective treatment. So now I get to sit and wait in limbo. Without a clue when and if I will get an official diagnosis and treatment. Unsure of whether that treatment will even be effective. Uncertain of a medical profession that has determined I must get much worse before finally making the diagnosis so many have told me they feel is the culprit.

One long, slow, uncertain day at a time. I’m not necessarily hopeful that I will get better, but I am absolutely hopeful that I will not continue to get worse. Sadly by not getting worse, I will ensure that they will not be able to make a diagnosis, which effectively means I will eventually get worse as the culprit will be left untreated.

Have you encountered uncertainty in your care? How do you handle uncertainty? What is your story of uncertainty? Please share with us in the comments below. We would love to hear your story!

Terminal Illness #AtoZChallenge

Terminal Illness     #AtoZChallenge

Typically when we think of chronic illness we don’t think of terminal illnesses. However many illnesses that end in a terminal condition can, in fact, be a result of a chronic illness. By definition, a chronic illness can be one that lasts more than three to six months. There are many terminal illnesses that would also be considered a chronic illness.

Several members of my extended family have battled cancer over a number of years. Some are still fighting the battle, keeping it at some sort of bay. Others are not so lucky. I have other family members who have battled kidney disease, one of who even had a transplant. Many times in my life I have encountered those who were so ill that it was deemed by them and their physicians that hospice care was the most logical path.

Sometimes the decision is made to forego further treatment in order to improve the quality of the limited time they have left. While this can be a controversial topic, I believe everyone has the right to determine their own best course of healthcare. Sometimes the treatments we may endure may not definitively prolong our lives and may leave us extremely sick or weak as a result. Maintaining a good and open rapport with your physicians is imperative in understanding where in this treatment process you may find yourself.

A relatively new change healthcare that could potentially cause concern, is the involvement of palliative care physicians early in your treatment. Palliative care has typically been thought of as an end-of-life option. However, the palliative care physician has evolved in many areas. Well before my brother reached a point in his cancer care that things were deemed to be terminal for him the palliative care team was involved in his care.

The first time we met with them in the ICU they explained to us that their role is expanding. In today’s healthcare system they are taking a more proactive role, with the express hope of decreasing suffering while increasing quality of life. This treatment can take many forms depending on your particular medical scenario. They also continue to make themselves available in the more traditional role of hospice and end-of-life care.

For those who are facing the decision as to whether to continue battling a seemingly never-ending battle with a disease process, this is a very difficult and personal choice. To some, it may sound like giving up. A better way to look at it is that the person is coming to terms with their situation, and choosing to embrace the time they have left and doing their best to ensure it is quality time with those they love.

Sense of Self #AtoZChallenge

Sense of Self     #AtoZChallenge

What is a sense of self? Typically it refers to how we perceive ourselves or in more simple terms it refers to self-image. How does our sense of self influence our lives? How does our sense of self transform when we are suddenly faced with a life-altering diagnosis?

When we are healthy and are able to do things we wish to do, including an occupation where we feel good about going to work each day, our sense of self is easy to identify. We can feel good about our chosen profession. We can feel good about our circle of friends we have built. We can feel good about our family and how close we feel to them.

When we find ourselves presented with a life changing illness or injury, we can face a whole new set of challenges in addition to the present medical situation. Suddenly we may find ourselves facing the very real losses associated with such a sudden change in our health and abilities. We may be unable to work either temporarily or worse yet permanently. We may face fluctuations or even losses of friends and family who are either unable or unwilling to accept our newfound limitations.

When we were able-bodied we often identified with our chosen profession. Without that label, we may struggle to determine who we are without it. Frequently when meeting someone new, one of the routine questions we may face is “What do you do?”. This reference to our occupation can be very difficult for someone who is seeking to identify who they are after finding themselves unable to work.

The key to finding yourself and your newly discovered sense of self is not always a simple one. The most important thing, in my opinion, is to cut yourself some slack! Give yourself some time to adjust physically to your new situation. Give yourself some time to mourn your old sense of who you were. Your injury or illness is not a sign of weakness!

As you begin to adjust to your situation, give yourself some credit on what you are able to do. It is important to recognize those things you are still able to so, or that you have accomplished despite your illness. We are often harder on ourselves than those around us may be. It is time to change this and improve how you feel about yourself. As you adapt to your new life, it pays to focus on the positive things, rather than to dwell on what may be outside of your reach.

As things progress, find things that you enjoy. Find things that make you feel good about yourself. Set goals that are both realistic and attainable that you and your care team can assist you in achieving. This could begin with something as simple as going outside. Enjoy the fresh air! Maybe you previously were a workaholic who spent most of your time inside in an office. Take the time to enjoy the outdoors. Even if you start simply by sitting on your front porch for a few minutes a day.

As time goes on, continue to find the things that bring you joy. It doesn’t matter how small and seemingly insignificant these things may be. No goal is insignificant if it brings you joy or helps you to feel better about yourself. Continue trying to keep things as positive as possible. Each little thing you do can improve how you perceive yourself. Share your experiences with others. Write in a journal so that you can look back and see the progress that you’ve made. This often helps one to keep things in perspective. This is especially true when we feel we may not be making any progress at all.

A true sense of self is often elusive, even to those who may not be facing challenges. It takes effort and time to find a true glimpse into who we feel we are after a major illness or injury. It is imperative that you give yourself the time to adjust and figure out who you feel you are or who you wish to become within the limits of your situation. There is no easy answer or guaranteed steps to accomplish this as it is a variable process based primarily upon your particular situation. There is also no regular time frame in which you must determine the answer to who you feel you are after diagnosis.

Do you have a story about how you adjusted to your new self? Have you found something that helped you improve your own sense of who you are?  Please share with us in the comments below. We would love to hear from you!

Resentment #AtoZChallenge

Resentment     #AtoZChallenge

It is not uncommon to experience resentment when facing a long term illness. Don’t beat yourself up if you encounter it. How you manage the resentment will make all the difference in your ability to work through it. Regardless of whether you resent yourself or think a loved one is feeling resentful towards you, you can conquer this!

When you feel as if you have lost your sense of self due to a chronic illness or injury, it is not at all unusual to feel some sort of resentment. Resentment towards life in general for the hand you were dealt. Resentment towards the person who just walked by you in the grocery store with apparent ease. Resentment towards medical professionals who you feel may be dismissing your symptoms. Or even resentment towards yourself for a perceived weakness in succumbing to whatever challenge you are facing.

Conversely, you could be the target of resentment. Friends may be resentful that you can no longer participate as actively in your friendships and activities. Possibly the family member or loved one that is your primary caregiver is resentful towards you for the additional burden on them. Maybe you feel that your children resent your illness and the fact that you may not be able to participate in activities with them as you once did.

Resentment can take many forms and go both ways. I think the most important tool towards dealing with any perception of resentment is open and honest communication skills. Second to that is the ability to step back and look at the issues surrounding the feelings of resentment as objectively as possible. Often these feelings may be perceived as opposed to real. If they are real, then it is up to you to initiate a discussion on how to change or resolve these potentially devastating feelings. There are no easy answers, but you can work through these feelings!

Do you have a story about feelings of resentment that you would like to share? How do you manage perceived feelings of resentment in your life? Share with us in the comments below!

Quality of Life #AtoZChallenge

Quality of Life     #AtoZChallenge

If you are chronically ill or care for someone who is ill, you’ve likely heard the term quality of life. Do you really know what this means? As a normal healthy adult, we may take the concept of quality of life for granted, as many people do. You have the ability to work and play without necessarily have to plan around any physical or medical limitations you may have.

As someone with chronic illness, regardless of whether your challenges are medical, physical or both, you no longer have that ability. You likely have to plan each and every aspect of your day. You may no longer be able to work. You may not be able to spend time with your children and grandchildren as you would like. Simply taking a walk with your significant other while hand in hand may be nearly impossible.

Quality of life is a fluid, multi-faceted, assessment of a huge host of factors. These factors may include such things as mental and physical health, satisfaction of life, independence, social interactions, our acceptance of our limitations, and our own perception as to what constitutes a good quality of life. These factors frequently change depending upon your current situation and abilities.

Evaluating your quality of life should not be based solely on one specific factor, rather a broad overview of many aspects of your life. Despite being in pain, confined to a wheelchair, or only able to work part time, you may feel as if you are happy with your quality of life. The determination of what comprises a good or even acceptable quality of life is a complex and subjective process.

One example of how to be realistic in determining what you wish to change to improve your quality of life follows. Once, during a particularly bad episode of low back pain and sciatica which made it nearly impossible to walk without a cane, I was prescribed physical therapy. The therapist was exceptionally forthcoming and yet upbeat. She explained  that we would not be able to correct the underlying problem but that we would likely be able to improve it.

She specifically asked what I felt would be realistic and attainable goals in order to improve my quality of life. I explained that I knew we would not be able to fix it, or even necessarily eliminate it, but I wanted two simple goals. At that point in time I was unable to wear anything but very loose fitting clothing seeing how a belt aggravated the low back and leg pain. I wanted to be able to wear regular pants with a belt. Secondly I wanted to be able to pick up my infant grandson without having to worry about dropping him due to me falling. We accomplished these goals by mitigating the pain and adjusting my actions to compensate for my limitations.

While the above example may sound super simplistic, improving your quality of life does not have to be a life changing alteration. Sometimes just learning to live within your limitations successfully can greatly improve your quality of life.

Have you discussed what you feel to be an acceptable quality of life with your medical team? Do you have a plan to ensure you can achieve your desired quality of life? What are some simple changes you can work towards to attempt to improve your quality of life?

Share your story and comments in the section below. We would love to hear from you about your thoughts on quality of life.

Pain Management #AtoZChallenge

Pain Management     #AtoZChallenge

In keeping with yesterday’s post regarding the use of opiates in treating pain, I thought for today’s post I would focus on non-narcotic alternatives to address your pain. Please realize that as with everything I write, the things I share are in no way personalized medical advice. You bear full responsibility for any actions you take regarding the information you read here. Furthermore, I suggest that you discuss any idea with your physician prior to implementation.

There are a variety of pain management techniques and tools that one could use as opposed to strictly pharmaceutical options. These alternatives can also be used to complement pharmacologic therapies in order to better manage your pain and hopefully require less narcotic interventions.

Biofeedback, cognitive-behavioral therapy and even psychotherapy are just a few tools that anyone with chronic pain can use to manage their pain more effectively. Along the same line as meditation and relaxation therapy also provide a means with which to retake control of the pain in your life, or at least manage it more easily. Some more advanced treatments that have been said to be effective in pain management are the use of Betar tables, Eye Movement Desensitization and Reprocessing (EMDR) and acupuncture.

While EMDR was originally designed for managing the stress of a traumatic experience, it has been shown to also help with pain management. Realistically speaking pain can very well be interpreted as a traumatic experience. the Betar table uses sound and magnetic waves to promote positive psychological and physiologic change, including pain management.

Gentle forms of physical activity can reduce stiffness and aid in alleviating pain. These can include yoga, Tai Chi, or even some of the low impact martial arts. Pool therapy is very helpful in permitting movement despite painful conditions when conducted in a warm pool. Medical massage can also be extremely helpful in managing pain associated with muscle spasms and many other disorders.

Some of the more controversial techniques to manage pain can include therapeutic touch, reiki, and the like. For the more scientific types among us, techniques such as these can be challenging as we desire to see scientific evidence in the aspect of a cause and effect relationship between a treatment and a cure. We often feel uneasy about things that are both unable to be seen and unable to be understood.

The most important goal of pain management is to find what works for you as an individual. What works for your friend or family member may not work as well for you. No two human beings are exactly alike. As a result, we often respond differently, even if only a subtle way, to the same medication or treatment. Regardless of what others think, find something that works for you, and stick with using it. If you are able to find a regimen of multiple treatment options that work for you, and you can alternate between them to find the best approach to manage your pain and improve your quality of life.

In closing, I would like to share a quick personal experience. Many years ago I was seeing a psychologist who specialized in treating those with severe pain. I was open to trying many things, including EMDR and the Betar table (amazing results!), but for some unknown reason, I drew the line at trying acupuncture. At one visit I was suffering from severe shortness of breath due to pneumonia. As I wheeled into the office he practically begged me to permit him to use acupuncture on me to improve my breathing. I was so ill that I reluctantly told him he could use one needle in each ear, and if it didn’t help he could never ask me again. (He specialized in auriculotherapy, which is specifically the use of acupuncture on coordinated body points in the ear.)

He carefully placed one very thin needle in each ear in what he told me were the lung points. To my complete and utter amazement, within a matter of three to five minutes, I was breathing as if I wasn’t ever even short of breath. I could take a full breath and had no more pain while doing so. The raspy sound of the fluid in mu lungs was incredibly reduced, almost nonexistent. Mind you I had been to my primary care physician just hours before and had refused to go to the hospital, as I wanted to try yet another outpatient course of antibiotics first. To this day I don’t understand precisely how or why it worked, but it most certainly did! As a result, after that, I permitted him to further explore how much acupuncture could do for me, which was a lot!

Unfortunately, acupuncture, as is true with many so-called alternative treatments was not covered by insurance and by itself prohibitively expensive. As life goes on, and he became unable to provide this therapy under the original circumstances, I found myself looking to alternative electronic acupuncture therapies, that while they may provide some relief, they most definitely do not provide the same level of relief that traditional acupuncture uses.

Have you found an alternative treatment that helps you manage your pain? Have you ever experienced something that to your surprise actually helped you better manage your pain? Please share your story in the comments section below. We would love to hear your experience!

Opiates in Pain Management #AtoZChallenge

Opiates in Pain Management      #AtoZChallenge

The debate over the use of prescription narcotics in the management of pain has long been a controversial topic. This topic has come more to the forefront of late as the debate heats up in both the media and the healthcare industry. There are arguments both for and against the use of opiates. In this post, I will share my knowledge and experience as they relate to the use of narcotics in pain management.

I have had numerous experiences with both acute as well as chronic pain. I have, at times, been on extremely high dosages of narcotics in an attempt to manage the pain, at that point chronic and increasing in nature. I was on such a high level of narcotics that it was determined that it was safer and more effective to implant an intrathecal pain pump to dispense the medication directly into my spine.

This required significantly less medication to achieve the same, even better, results. Doing this enabled me to manage the pain in order to undergo intensive physical therapy towards a better quality of life. Eventually, I made the difficult and personal decision to discontinue the medications to remove the side effects and further increase my quality of life.

More recently, I had undergone multiple major neurosurgical procedures in an attempt to relieve a spinal cord injury in my neck. While in the hospital, just a day or two after the surgeries, I was informed by a pain specialist that they would only treat my pain for a maximum of two weeks. After that, I would no longer receive any pain management whatsoever.

After five days in the hospital I was transferred to a spinal cord injury unit in a local physical rehabilitation hospital. While I have become accustomed to managing a great deal of pain in my daily life over the years, I was extremely grateful to find that the rehab hospital was not subscribing to the two weeks and done philosophy dictated by the pain practitioner in the hospital. I spent many weeks recovering from the surgery and performing several hours a day of various therapies in order to improve and ultimately hopefully restore functions affected by my spinal cord injury.

It is now four months post surgery and I’ve managed without pain medication for roughly two months now, by my own choice. I’m not going to lie to you, some days like yesterday are absolutely horrible. It is a personal choice and one that only you and your properly trained healthcare provider can make together after weighing all the options.

Having worked in the healthcare field as well as having been a patient, I will admit that there can certainly be abuse of prescription pain medications. But I do not think that a blanket rule of a set number of days of therapy is the best approach. Pain is an extremely individual issue that should be handled on a case by case basis by properly educated persons. There are many factors that affect pain from the nature of the initial injury to injuries of surrounding tissues and especially nerve damage.

As medical science, the study of pain, and technology improve there are more and more interventions becoming available that can decrease the need for opiates in pain management. However some are infinitely difficult to find, and like nearly all medical treatments, are not without their own risks. Nobody should be forced to live in pain due to stigma, fear of being labeled a drug-seeker, or fear of addiction. There are plenty of ways to mitigate these risks while mitigating at least some of your pain to improve your quality of life. Many times chronic pain will never be relieved entirely, but there are a wide variety of ways in which you can improve your life either with or without the use of narcotic medications.

What are your experiences with the use of narcotics in pain management? Would you  like to share your story with us? We would love to hear from you! Please remember to be respectful as everyone experiences pain differently and we all should be treated with respect. Reply in the comments below.

Nutrition #AtoZChallenge

Nutrition     #AtoZChallenge

Proper nutrition is necessary for proper health. This often becomes even more important to those of us with chronic health issues. It becomes even more problematic for those of us with a permanent disability which forces us to live on a fixed, and often small, income.

I am neither a nutritionist nor a registered dietician. What I am is a person who have experienced the information contained in this post firsthand. While on the surface it may not seem to be logical, I assure you that it is in fact based on medical science, and I have discussed this with many health professionals over the years from nutritionists to registered dietitians, to physicians and physical/occupational therapists.

I’ve spent more time than I care to think about as a patient in hospitals than I care to think about in recent years. During and after these hospitalizations I have noticed a trend. One that I found kind of troubling during a recent forty plus day hospitalization after multiple neurosurgical procedures.

This most recent inpatient stay consisted of five days in the hospital and the majority of the remainder in a local physical rehabilitation hospital. I lost over twenty-five pounds during this entire inpatient experience, despite the fact that I often ate close to three times my normal intake. This didn’t include snacks, calories from beverages, and the like, which was also way above my normal intake. However, when I finally went home, I rapidly put on the twenty-five pounds I was so proud of losing.

I discussed this with a number of professionals, as I was flabbergasted as to how this could happen. It wasn’t drug related, for I’ve had weight changes in the past after treatment with high dose steroids, and am all too familiar with the drawbacks involved with steroids. As it was explained to me, the cause was simple. I ate more frequent and more regular meals while an inpatient. When I returned home, I went back to my old habits of eating only once a day on average.

It was explained to me that, similar to what is taught to a diabetic, smaller more frequent meals are better for the body. I am told it has to do with regulating blood sugar levels and the spikes of blood sugar. It was also explained to me that when you only eat one significant meal that in between your body goes into a type of starvation mode. This causes your body to store more of the energy for later use, which can turn to fat. By eating regular balanced meals you can avoid these spikes and plateaus which allow your body to more efficiently manage the items you ingest.

While I’ve both been taught this, and learned it from previous experiences, I had never encountered such a drastic example of how this happens. I had lost similar amounts of weight in previous hospitalizations but had always attributed it to how ill I had been. Conversely, I had gained some of the lost weight back after returning home. However, this was the first time I could definitely say it was not due to how ill or bedridden I had been. This had prompted me to do the research and share this story with others who may have experienced it.

Have you experienced a drastic weight change during or after a hospitalization? Please share with us in the comments below! Are you a medical professional who can explain it better than I have? By all means, feel free to do so!

The Mask We Show Others #AtoZChallenge

The Mask We Show Others     #AtoZChallenge

Chronic illness often forces us to create a mask that we show to others. This mask allows us to hide behind it and not to reveal the true nature of how we feel on a given day. Why would we do this you ask? Well, let’s delve into that and see if we can shed some light on the topic, and the mask itself as well as what we may be hiding with it.

Regardless of how great a support system we have, we tend to hide the worst of what we are feeling to one degree or another. We try to protect those closest to us from the depths of our suffering. We may feel as if we are a burden to them, and as such decide to attempt to shield them from how horribly we really feel. We may be concerned that they are beginning to feel as if everything in the relationship (whether parental, sibling, or significant other) revolves around us. We may even feel that they would be better off without us in the aspect that they could return to some semblance of a normal life.

Regardless of your reasons, we all put on a mask at some point and for some people. I often wear a mask for the simple reason that even the most caring of friends and family must surely get tired of seeing the pain on my face or hearing how I feel as if my body has betrayed me that day. While those of us battling chronic illness have our own set of unique problems, those that care about and for us have an entirely different set of problems.

I am neither condoning nor condemning the use of a mask. I am simply pointing out that each of us will likely use a mask at some point in our battle with chronic illness. Whether we simply say “I’m tired” when what we really want to say is “I hurt so bad I can’t even begin to explain it to you”. I won’t digress into the pros, cons, or reasoning for or against the use of masks. for that is way beyond the scope of this short blog post. What I can tell you is that nearly everyone with whom I have ever come into contact uses a mask at some point and to varying degrees.

I, myself, am guilty of using a mask at times. I find myself doing this with both friends and family. If you have an invisible illness then I am willing to bet that you also make use of a mask at times. This is much more likely on the days where you may outwardly look well, but on the inside feel horribly beyond what words can even begin to describe. And you likely get tired of trying to explain the disparity between what you look like and what you feel inside.

Do you have a story to share with us about your use of a mask? Who do you show your mask to? We would love to hear it in the comments below!