What is a chronic Illness Anyway?

What Is A Chronic Illness, Anyway?    Annonymus, author unknown


A chronic illness is a disease or disorder that a person has to cope with on
a continuous basis. Many people become so ill, they are unable to work and
are forced to give up activities they have always enjoyed. Often their
illness goes undiagnosed for years, leaving thousands of people frustrated,
depressed and without answers to why their bodies will not cooperate with
their desires.


But, They "LOOK" Fine! How Can They Be Ill?


Many chronic illnesses such as: Arthritis, Chemical Depression, Crohn's
Disease, CFIDSi, Cystic Fibrosis, Diabetes, Fibromyalgiai, Heart Disorders,
Hypothyroidism, IBSi, Lyme Disease, Lupus, Multiple Sclerosis, Neurological
Disorders, Osteoporosis, Parkinson’s, RSD, Women's Chronic Disorders and
many, many others cannot be seen with the naked eye, but are nevertheless
persistently keeping the person from enjoying life the way they once knew
(this is only a sample of the dozens of illnesses which can be debilitating
and not intended to be a complete list)!

Unfortunately, their families and friends are rarely supportive and
understanding, because they do not see a broken bone or bleeding head to
confirm the complaints. However, do not expect to see a disease that lives
below the skin, because most illnesses are invisible until the person has
had chemo or organ failure! Your friend or family member needs you to
believe what they are saying is true, without judgment or question.

So, They Have "Good" & "Bad" Days, Right?

Actually, not everyone with a chronic illness has the same symptoms or
degree of symptoms; yet, there are basically three stages in any chronic
illness:

1) THE EARLY STAGE: This person may notice occasional symptoms or lack of
energy. They start experiencing setbacks from activities which previously
never took a thought. If diagnosed in this stage, which is rare, many can
get help from their doctors and proper nutrition to cure or prevent further
progression of the disease. This person has mostly "good" days with
occasional "bad" days.

2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This person may have
frequent bouts of symptoms and is forced to make limitations for themselves
in order to avoid extreme fatigue and relapse of illness. They reluctantly
begin discovering that the simple things they used to enjoy, now must be
done with care or sacrificed completely. In this stage, some can lower the
frequency of relapse and progression of the disease with help from their
doctors and proper nutrition. This person has both "good" and "bad" days,
depending on activity and stress.

3) THE LATE STAGE (or the Chronic/Progressive Stage): This person’s disease
has progressed to the point where it does not remit. They live each and
every day with symptoms that feel much like having the stomach flu, complete
with extreme to unimaginable fatigue, muscle aches, weakness, nausea,
cognitive difficulties, dizziness and/or pain.

When they push themselves to do what used to be easy, like dusting a piece
of furniture, going to a relative’s house or doing a load of laundry, they
pay a high price, because their symptoms worsen to an unbearable level for
days and even months. In cases like Multiple Sclerosis, the treating drugs
available are affective only for persons in stages 1 and 2. This person does
not have "good" days, only "bad" days and "horrific" days.

But, What If They "Give In" To The Illness?

When a young ice skater named Nancy Karrigan was assaulted and suffered a
leg injury, she faced the possibility of losing all of which she had
dreamed; the whole world cried with Nancy, because it could have meant the
end of her skating career! Yet, when a person loses their job or is forced
to give up their career due to illness, for some reason, people often treat
them like they are choosing to do so; and, they are often insensitive to the
fact that the sufferer has lost all for which they have worked, planned and
hoped for their future.

Most people do not "give in" to illness; in fact, it is ingrained in our
nature to fight to survive as hard and as long as humanly possibly. If you
believe that your loved one is "giving in" to the illness, because they have
given up their usual activities, this is just your perception of how they
are handling their limitations.

When a person first experiences the effects of a chronic illness, they have
a fantastic attitude about conquering it; they feel strong and invincible to
its grip. Even if the disease progresses, they will continue to fight for
their right to live the way they planned their lives to be; and, they will
stay persistent in the battle until their bodies force them to make
limitations.

Creating limitations for oneself is one of the hardest things a person can
do. It goes against everything we are and everything we ever hoped to be. No
one wants to be sick and no one ever chooses to give up those things in life
which bring such joy. Yet, these limitations are mandatory in managing a
chronic illness; so, respect their new boundaries by acknowledging their
losses and supporting their need to say, "No."

We, as chronic illness sufferers, do not want to give up; we want to laugh,
smile, look our best and enjoy life; after all, it is our incredible
courage, perseverance and persistencei to fight for our lives which make our
painful disabilities seem invisible to the naked eye.

Well, I Still Don't Understand!

At least once in your life, you have probably experienced having to stay
home from work or school, because you were too sick to go; incidently, I
have yet to meet someone who has a cold or the flu tell me they are having
the time of their lives and enjoying every minute of it! Or, you may have
been hurt in an accident and were forced to give up activities you loved for
weeks or even months; so, you know how stressful, depressing and frustrating
being unable to do what you want to do can be!

Now, when I refer to being sick, I am not talking about feeling just a
little "under the weather" or just not "up to" going to work that day. I am
talking about being so sick you can barely sit up or talk, having a fever
that makes every muscle ache and your bones feel like they are being
crushed. Then, when you try to get up to go to the bathroom, your head
pounds, your body feels like it weighs a ton and you become dizzy and
nauseous.

Just imagine feeling that way every single day, week after week and year
after year. True, some chronic illness sufferers have a few "good days" in
between, but many do not have any at all! So, if you see them out and
smiling, does that mean they are having a "good day?" Not necessarily! Many
times they cannot wait for a "good day" to get out, because they do not have
them; thus, they make the sacrifice, sitting there in horrible agony and
knowing they will pay dearly for it later!

No human being can be at peace with being sick day in and day out! In fact,
most people become very frustrated and impatient after just a few hours;
then, if it lasts a few days, they become panicked and angry about missing
work, school or other activities; next, they become depressed and act like a
week out of their busy lives is the end of the world! Yet, they often treat
their loved ones like losing months and years out of their lives is no big
deal! So, why would you expect your loved one to be happy with losing years
of their lives, when you cannot stand to even lose a few days?

It is true, you will never fully comprehend what it is like to be
chronically ill, with all of the loss and pain it poses. You will never know
what it is like to feel horrible every day and you will never have a grasp
at what it is like to watch your lifetime dreams come crashing down forever.
So, stop using the excuse that you do not have understanding and start
focusing on whether or not you have compassion!

In all, your loved one just wants you see their courage in enduring a life
of feeling sick, achy and exhausted all of the time; and, you have the
capacity to know you would not want to feel this way every day yourself! You
know how horrible it is to be sick and forced to put your life on hold for a
while, so why don’t you tell them how amazed you are at their strength and
perseverance!

It Seems like I Am Always Saying The Wrong Thing!

What can sometimes be even harder to bear than the illness itself, is
feeling alone in the daily struggle and mourning of lifelong dreams. As
pieces of oneself die off bit by bit, isolation consumes them when others
refuse to affirm their pain. By repeatedly trying to "cheer them up" and
make them see the "bright side" you are not validating their pain, but
instead saying, "I don’t want to hear the truth" or "your losses don’t
matter." On the other hand, if you acknowledge their losses, they will no
longer be compelled to gain your belief by having to explain their situation
over and over again.

Resist the temptation to make a visual diagnosis by saying, "gee, you look
like you’re feeling good today" or "hey, you must be doing well." They may
look like they are feeling well, because there is joy in their face from
seeing you; however, your comment will only make them realize they are alone
in their battle, since you are evidently unaware of their insurmountable
hurdles.

In other words, by rebutting their answers with, "But you LOOK good," your
friend really hears, "But, I don’t believe you, because you look fine to
me." Instead try, "I am so glad to see you," "wow, I can’t imagine what you
go through, you are amazing!" "you look nice today," or "how can I pray for
you?"

Encourage your loved one by affirming your trust in them, loving them and
showing them that they are still just as valuable to you even if they can no
longer do the things they used to do; your willingness to acknowledge their
losses will give them the strength and positive attitude they need to fight
the illness, instead of wasting their energy fighting with you to believe.
They are not seeking your pity or sympathy, they simply want your
compassion; some will need your help, just listen, they will tell you how.


We, as chronic illness sufferers, do not want to give up; we want to laugh,
smile, look our best and enjoy life; after all, it is our incredible
courage, perseverance and persistence to fight for our lives which make our
painful disabilities seem invisible to the naked eye

Louise

You have spoken eloquently and truthfully for all of us.  It is an honor to have you here.  Thank you and huge congratulations on completing a unique adventure.  I am incredibly happy for you.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Thank you Louise. Beautiful piece. Your descriptions of the sadness associated with goals and dreams evaporating, and how we often choose to put up a front and pretend everything is fine really resonated with me. Your references to the problems caused be the invisible nature of many chronic illnesses were also so truthful. Congratulations for writing and posting this piece of work. 

Alison

Mysterious symptoms from 1997-2011. MS Dxi 2011, Lyme and co-infectionsi Dx 2013, Mould sickness Dx 2014. Cpni CAPi 12 months, Lyme CAP 10 months, mould treatment 6 months, Cpn/Lyme CAP currently, lots of supplementsi for years.

Hi Rica,   I just added annonymous author unknown.   I posted this a number of years ago and just found it in the archives of a local Lyme web site file attachments.   I do really like it and it says a lot of how many of those with unseen illnesses are held by many in society.

Maybe you can edit your post and take the credit away from me personally ;0)

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Thanks Alison.  I do really like this piece too.  I just edited the post to give anonymus author the credit.

Perhaps you can edit your reply before to many folks think that I am so elequently spoken   ;0)

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

No worries Louise, I can't edit my post because it was a comment and not a reply. I hope that the anonymous author might one day stumble across the comments. If not, you've still done a good thing by re-posting the piece for all to reflect upon :)

Alison

Mysterious symptoms from 1997-2011. MS Dxi 2011, Lyme and co-infectionsi Dx 2013, Mould sickness Dx 2014. Cpni CAPi 12 months, Lyme CAP 10 months, mould treatment 6 months, Cpn/Lyme CAP currently, lots of supplementsi for years.

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