Chronic Illness and its Various Meanings

What is the true definition of a Chronic Illness?
Further to that, does the most basic definition really capture the widespread severity of long-lasting illnesses.

Click here for a link to an article that discusses the various definitions of chronic illness and the implications of having so many different meanings and understandings of this term. This link also discusses the differing definitions explained on various websites, including MedicineNet and Oxford Dictionaries. 

Excerpts from the first link:
                    'Another academic study on chronic disease, authored by a geriatrician, classifies chronic illness as “conditions that last a year or more and require ongoing medical attention and/or limit activities of daily living”'

'The World Health Organization states that chronic diseases,

are not passed from person to person. They are of long duration and generally slow progression. The four main types … are cardiovascular diseases (like heart attacks and stroke), cancers, chronic respiratory diseases (such as chronic obstructed pulmonary disease and asthma) and diabetes'

And criteria listed from another site:

'complex causality, with multiple factors leading to their onset

a long development period, for which there may be no symptoms

a prolonged course of illness, perhaps leading to other health complications

associated functional impairment or disability'

Other definitions describe chronic illness as anything lasting 3 months or longer, in direct opposition to an acute illness.
So would you call a 6 month long stint with mono 'chronic mono'? Or a broken leg taking longer than 3 months to heal 'chronic bone fractures'? There are times when utilizing the term 'chronic disease' is done too liberally. 

So what is my understanding of a chronic illness?
What are definitions on various medical sites of chronic illness? 
And is putting the word 'chronic' in front of an already understood lifelong disorder - like 'chronic asthma' redundant?

So how do we know what is truly considered a chronic illness.
With so many definitions, the meaning can be lost.
My understanding of a chronic illness is a disease that requires constant medical care, is incurable as we know now, and is a lifelong disease that has fluctuations in severity but will never go away, and affects an individual's ability to function normally in daily life. This includes both physical and mental illnesses. 

Some definitions contradict what I have learned. Some definitions point out that the only real chronic illnesses include cancer, respiratory diseases (like asthma and COPD), diabetes, and arthritis.
Other definitions include *everything* - medical or otherwise - that lasts longer than three months. Various links even suggest the use of the term with behaviours - like chronic nail biting, chronic exercising, or a classroom being chronically overcrowded. With medical terms it has even gone so far as having a chronic sprain, chronic acne, or a chronic sunburn.

In my opinion, the overuse of this term, and the lack of consensus on what the true definition of chronic illness is, results in trivializing those who do suffer with chronically painful diseases.
This type of overly used terminology can lead to discrediting those who truly suffer - very much in the same way that over-diagnosing illnesses like Lyme Disease or Fibromyalgia (when the cause of the patient's suffering just cannot be narrowed down immediately) leads to a general disbelief in the diagnosis itself - even though the diseases are very real.

So how do we decide the true definition of chronic illness?

If we look at particular diseases/disorders, like Chronic Migraines, there is a specific set of criteria that must be met. According to neurosurgeons and various societies dedicated to migraines and severe headaches, a patient must suffer at least 15 migraines a month for a period of at least three consecutive months in order to be considered a chronic migraine sufferer. 

With a disease like Chronic Pouchitis (which sounds made up, I know), the constant inflammation of a J-Pouch (created with the small intestine after the removal of the large intestine) has to last for more than 6 months. In addition, Chronic Pouchitis is diagnosed when medications have been ultimately unsuccessfully in driving out the inflammation. 

What about Inflammatory Bowel Diseases? What about lifelong Hereditary diseases - like Huntington's Disease? Does a disease need to be severe or potentially terminal to be considered chronic? Does an illness have to be considered incurable or a lifelong disease to be termed chronic? Or does a chronic illness simply refer to any symptom lasting more than 3 months? 

In my opinion, we need to be very careful in regards to what illnesses we call chronic. 

Just like using umbrella syndrome definitions results in the minimalizing of those who truly suffer, using the term 'chronic' for anything that causes discomfort for a few weeks will result in more patients having to fight to be believed.

Fight the Fusion

Out of every disease that I suffer from, two of the most terrifying for me are Hereditary Angioedema (HAE) and Ankylosing Spondylitis (AS).

While HAE can be considered to have less of a progressive future, AS is one of those diseases that you do not want to see ahead of time what the future may hold.
This particular spondyloarthropy causes inflammation, erosion, and fusion mainly within the SI Joints and spine. It can affect other regions and in severe cases can fuse the ribs together - which can cause severe organ complications. It is often diagnosed in young adulthood and can progress very quickly.
With any chronic illness, there are infinite variations and differing experiences, but the overall progression is similar. Inflammation - Erosion - Fusion - potential surgery.
So that is why we have to do everything in our power to slow down this frightening process.

The complication of also having HAE is that many of the medications used to slow down AS is contraindicated; the Biologic medications tend to exacerbate HAE symptoms. When HAE attacks consist of throat swelling and obstructed breathing, these medications are not safe.

This fact is another reason why I have been practicing yoga so much more in recent months. Staying active as much as possible has been shown to potentially help slow down fusion in the spine. So, although I cannot be active every single day, nor can I be active for more than ten minutes or so at a time, I will Fight the Fusion by being committed to stretching and strengthening my body.

Along with this blog, I chronicle much of my battle with chronic illness on other platforms.
Click the link to follow my Instagram page and join me in my commitment to Fight the Fusion!!
Share your stories and videos, DM my page if you would like to be featured, and help give a voice and awareness for all of us suffering with Ankylosing Spondylitis, with chronic illness, with inflammatory illnesses, who are doing what they can, whenever they can, to maintain an active lifestyle in some capacity.

Why is it Hard to Say "Disabled"?

It is such a strange taboo, this entire connotation that accompanies the word:
"Disabled".
Merriam-Webster includes several versions of the definition - one of which is to be "impaired or limited by a physical, mental, cognitive, or developmental condition : affected by disability".

But why does it feel a little more accepted to say:

"I have a disability"

and extremely uncomfortable to say:

"I am disabled".

Do you think there is a difference, or is this an entirely social issue? Is it an imaginary feel to the phrase? Or is it something tangible?

For me I think the only difference is guilt.
I have hundreds of pages of paperwork from several factions of medical and government organizations, specialists, physicians, etc... that all say the same thing: due to illness I am deemed disabled. Though because I am not bound to a wheelchair, because I do not have an illness that is considered terminal, and because my illnesses cannot be seen with the naked eye, I feel much more comfortable saying that I have a disability.

There may be one other reason.
Pride.

But why is it more difficult to say one phrase over the other? Why does the second phrase seem so final?

The truth is, maybe I should be saying the second phrase. Perhaps it has a level of permanence to it that 'having a disability' or 'suffering from a disability' just does not have. Maybe it is because being disabled is a much more accurate representation since what I suffer from is incurable and progressive - which means that, in all likelihood, I will continue to get worse (hopefully in a slow fashion).

My husband sees the difference in the two phrases as one implying complete disability and the other implying only partial disability. Which makes complete sense.

What do you think?
Is it a stigma or is it just my own personal perception? Are there reasons you feel uncomfortable saying either phrase?
Let me know in the comments below or on social media. I would love to know your take on a mere three-four words.

(Even with writing this post I am extremely reluctant to write, in earnest, that I am disabled).

The Right Equipment

I know that when diving into a new activity or hobby, the right equipment can be vital to practice.

With becoming serious about piano, it is important to own a keyboard or piano that has the full 88 keys, and ideally has weighted keys. There are many different keyboards that have both of those features and can be found for modest prices. You don't necessarily need a real piano, and even a 55 keyboard that still has weighted keys is a step in the right direction. When practicing seriously though, the right equipment is essential.

This same idea also pertains to any athletic sport. Having the proper cleats for baseball, or the proper gloves for golfing, or the proper kayak for where you plan on kayaking can make a huge difference.

Even when having to use a wheelchair, buying a proper set of gloves, and even looking into a custom wheelchair (or at least being assessed for what a person will need in a wheelchair) is essential to comfort and proper propulsion.

But what about attire? Clothing?
In volleyball, owning appropriate spandex shorts and runners definitely made a significant difference in movement capabilities. Kayaking in cold weather requires clothing that is lightweight but warm, and can really make the difference between paddling with bulky strokes versus comfortable, natural, paddling movements.

As I have mentioned recently, I am finally getting back into yoga after a bit of a reprieve. I have a couple of amazing yoga mats - including a Nomad mat made of recycled jeans that I absolutely love. I have all of the proper blocks, bands, mat cleaners, The Beam to help with my back, and even ankle and wrist weights for when I improve upon my own strength.
What is nice is that yoga does not require a lot of different pieces of equipment to practice. Hell, you can practice yoga anywhere, on virtually any surface. It can be a relatively inexpensive activity.
My question is - how essential is proper yoga attire to comfortable practice?

I still have a few spandex shorts from my years playing volleyball, I have some pretty comfy tanks, and I have several pairs of generic printed leggings. But does proper yoga attire make a difference in being able to move properly? Will my stretching and breathing and posing be more fluid if I were wearing true-to-form yoga-branded clothing?
What are your suggestions for the best yoga attire for modest prices?

For now I will stick with basic, inexpensive pieces I already own, but I would love to know how much of a difference yoga clothing actually makes.