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ICI (invisible chronic illness)
can be debilitating pain, fatigue, weakness, cognitive impairments, and/or other symptoms that are not visible to others
-- they are usually lifetime illnesses that have no cure, difficult to diagnose and to treat, unpredictable,
and very hard for us to explain or for those around us to understand. (Some examples can be fibromyalgia, multiple
sclerosis, chronic fatigue immune deficiency syndrome, irritable bowel sydrome, bipolar disorder, lupus, rheumatoid
arthritis, and numerous autoimmune diseases.)
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Symptoms, (sometimes weird) You Thought Only You Had
Before I became ill I thought there were
basically three symptoms those with chronic illness dealt with: Pain and/or a visible disability like walking on crutches
or in a wheelchair (which isn't a symptom, just never gave it much thought what they may be actually feeling), and in
the case of someone having cancer or heart disease, I knew fatigue was involved. Little did I know there was a lot more
to chronic illness than this. I found out that those with chronic illness may experience a variety of symptoms,
some very weird like the graphic on this page -- coffee with lime and herbs? --- no, it's not tea, the name of this
webset is called "coffee for two".
"I Thought I Was the Only One!"
I'm sure most, if not all of you ICIers, after sharing
symptoms with another ICIer have thought or said, "I thought I was the only one!" Isn't it a comfort and
relief to find out that someone understands what you are going through and can relate with what you are describing? In our
mind it validates our symptoms, especially the weird ones. And, if we have friends or loved ones who have a difficult time
believing us, telling them others are experiencing the same thing makes the symptoms more legitimate in their minds. I'm
sorry it has to be that way, but sometimes that's the reality of it.
"My
doctor tells me it's just anxiety."
Frankly, doctors don't know it all. Often they only
know what is mentioned in text books and while some learn from their patients, there are many who disregard any symptom a
patient may mention that is not in the norm (i.e. textbook). Because of this patients won't bring up the "weird"
symptoms for fear of being dismissed as anxiety-stricken or judged as trying to be sicker than what they are.
People
with on-going physical illness may not mention their weird symptoms to each other, thinking they must be "just
in my head," and they begin to doubt themselves -- "maybe that doctor was right when he thought I needed
a psychologist" or "I'm just depressed." I believe 98% of the time the doctor
is just ignorant and he may not want to admit he/she doesn't know. Perhaps they have "textbookitis" (if the
symptom is not found in the textbook it is non-existent). There may be 2% of us that have allowed anxiety or depression to
contribute to our symptoms, but, hey, we're grownups - let's not allow others who doubt (even doctors) influence us
to doubt ourselves.
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NoName
Note from Pat: I made up the name of this illness. This is the category I'm in: Doctors know what's going on but
they don't know the source of the problem.
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(1) If you are undiagnosed,
don't diagnose yourself from this list. There are so many chronic illnesses that have similar symptoms and it could be
just a couple of symptoms that differentiate that two. Also, there are only so many ways an illness can manifest itself in
a human body so keep in mind, for instance, if the disease is autoimmune you will have similar symptoms to another person with
autoimmune illness but they may have a completely different disease.
(2)
Also if you have the same illness as describe below and do not have some of the symptoms that are mentioned, keep in mind
everyone is different and the human body may react differently to the pathogen as well as to the medications that may be involved.
Also others may have a different form of the same disease and a different level of severity.
(3)
Not all symptoms may come from your particular chronic illness. Those of us who live with an illness that produces many
symptoms have a tendacy to blame all our physical problems on the illness. Sometimes it may just be a "normal" symptom
of growing older and our bodies changing and sometimes it may be a different problem that has developed. For instance, last
year I was feeling slightly dizzy and nauseated every day. I attibuted it to the hot Florida summer, which my body does react
strongly to. Come to find out it was high blood pressure and after I began the medication the dizziness and nausea stopped.
One
More Reason for These Lists
Keep in mind these lists are not to
be used as a way of diagnosing yourself. They are just a list of symptoms that you and I have experienced and it is possible
they may be coming from a different source than the category they are listed under. Also, everyone is different and may experience
different symptoms with the same illness.
Please don't send me a list of symptoms you read on the internet.
I want to know what you are experiencing (not what a textbook or doctor says you are suppose to experience) and not
what a friend of your's is experiencing.
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