Living with Chronic, Invisible Illnesses You Are Not Alone

By Carrie Allen

         Living with Chronic, Invisible, Illnesses – You Are Not Alone is a glimpse into the life of the author, Carrie A. Allen, since she was diagnosed with three different illnesses.  Ms. Allen goes into detail of her illnesses, Mast Cell Activation Disorder (MSAD), Ehlers Danlos Syndrome (EDS); and Postural Orthostatic Tachycardia Syndrome (POTS).  However, before doing so she has provided the meaning to different medical terms that are used in the world of illnesses.  Ms. Allen also goes into detail of living her daily life for an entire month so readers can see how the illnesses effect everything that she does and how the limit her on a regular basis.  She also has given us a look into the life of her daughter who has also been diagnosed with several Chronic, Invisible, Illnesses. 

         The authors purpose with this book is to let those that are also suffering with invisible illness know that they are not alone in their journey.  She also hopes that normies will read this book and get a better understanding of what individuals with invisible illnesses go through.  Remember – YOU ARE NOT ALONE.

• Language: English
• Publisher: Carrie Allen
• Release date: Nov 5, 2022
• ISBN: 9798215766491

Carrie Allen

Carrie A. Allen has spent her life living in Mesa, Arizona, a suburb of Phoenix, Arizona.   She is a mother of one daughter and soon to be grandmother.   Carrie has her bachelor’s degree in Business Administration.  Beside working full time, she has spent the last ten years researching Chronic, Invisible Illnesses, as both her and her daughter live with a few of these illnesses.  In her free time Carrie enjoys painting and knitting. 

Book preview

Chapter 1 - The Boring Stuff

I am starting off with the terminology (yes, the boring and educational stuff) that you will see used throughout this book and used by medical professionals or others suffering with chronic, invisible illnesses.

Anxiety – A feeling of fear that makes a person uneasy, anxious or causes a state of panic. The following are symptoms of Anxiety:

Ringing in the ears

The feeling that your ears are clogged, or your hearing is muffled

Sweating

Restlessness

Rapid heart rate

Rapid breathing

Holding your breath without realizing you are

Mental Flashbacks

The fear of what is to come

Being afraid the past will repeat itself

These are just a few symptoms of Anxiety, and it is important to note that symptoms can vary from person to person depending on what triggers their Anxiety.

Autonomic Nervous System – Is the part of your nervous system that controls all involuntary actions in your body.  Such as digestion, heart rate, blood pressure, respiration (breathing), perspiration (sweating) and urination.  This is not a complete list of what the Autonomic Nervous System controls, but I hope it gives you a basic understanding that many of your bodily functions are controlled by your Autonomic Nervous System.

Brain Fog – Caused by the lack of blood flow and oxygen to the brain.  During a brain fog moment, a person can have short term memory loss, confusion, forget words while speaking, loss their train of thought, cannot concentrate and can have a headache.  At times it can feel like you are walking around with your head in the clouds.   

Chronic Illness (also referred to as Chronic Disease) - I will be using the term Chronic Illness as I much rather say I have an illness than a disease.  It just sounds better.   This is an illness/disease that can last more than a year (sometimes your whole life) and requires ongoing and unlimited medical attention.  A Chronic Illness can but not always, limit your daily activities.

Some examples of a chronic Illness/disease are

Heart Disease

Stroke

Cancers

Depression

Diabetes

Arthritis

Asthma

Kidney Disease

ALS (Lou Gehrig’s Disease)

Alzheimer’s

This is not a complete list, but these are what the medical institution claims to be the most popular. I will tell you; my illnesses are not on this list as they are not recognized as popular Chronic Illnesses.

Costochondritis – Also referred to as a fake heart attack.  It is the inflammation of the cartilage around your ribs that causes a squeezing and pain, similar to the pain caused by having a heart attack.

Dysautonomia – Such a big word to state your autonomic nervous system is dysfunctional.  Dysautonomia can affect every aspect of your body.

Ehlers Danlos Syndrome (EDS) – Is a connective tissue disorder that creates joint instability that leads to your muscles working harder than a person without Ehlers Danlos Syndrome.  This instability is due to an incurable, inherited connective tissue disorder. It comes from a gene mutation that tells our bodies how to assemble collagen.  This is a very painful syndrome due to micro tears within your muscles, joint subluxations, and mild muscle demyelination.  Ehlers Danlos Syndrome can affect the following parts of your body:

Joints

Skin

Ligaments

Muscles

Cartilage

Blood Vessels

There are 13 different sub-types of Ehlers Danlos Syndrome which makes providing a list of symptoms difficult because symptoms you might have will depend on the sub-type of Ehlers Danlos Syndrome that you have. Hypermobility is the most common type of Ehlers Danlos Syndrome.

Fibromyalgia – Nerve pain throughout the body

Invisible Illness – Is an illness that is not always visible to the human eye and therefore can take several years to diagnose.  These illnesses are typically chronic illnesses that can impact your daily living.  Some examples of Invisible Illnesses are:

Fibromyalgia

Diabetes

Chronic Fatigue Syndrome

Migraines

Intestinal Illnesses

Depression

Anxiety

Dysautonomia

Please keep in mind that this is just a few Invisible Illnesses, there are many more.  

Mast Cell Activation Disorder (MCAD) – Mast Cells (also known as allergy cells) make-up part of our immune system.  These cells release histamine during allergic reactions.  However, these cells can become imbalanced and overreact to situations that would otherwise not affect a normal person.  There are three different types of Mast Cell Activation: Food; Physical/Environmental and Chemical. A person can have just one, a combination of two or go for the trifecta of all three.  Mast Cell Activation can affect the following body systems:

Skin

Respiratory

Gastrointestinal

Cardiovascular

Neurological

Some of the symptoms people experience can be the following:

Hives or red itchy bumps on the skin

Skin flushing (also known as blushing)

Nausea/vomiting

Food intolerance

Drug intolerance

Headaches

Muscle pain

Skin warm to the touch

Coughing

Shortness of breath

Trouble swallowing

Runny nose

Sneezing

Diarrhea

Dizziness/Lightheadedness

Weak Pulse

Fainting

Anxiety

Most research will say that Mast Cell Activation Disorder is a symptom of Postural Orthostatic Tachycardia Syndrome

Normies – Healthy people, whom do not have chronic, invisible illnesses

Orthostatic Hypotension/Postural Hypotension – Is when your blood pressure drops drastically upon changing positions from laying to sitting or standing, and from sitting to standing.  This drop in blood pressure is due to autonomic nervous system failure.

Osteoporosis – Weak and brittle bones

Pain Scale – Is an assessment tool that medical professionals use to determine how much pain an individual is in. This tool goes from 0 to 10, with 0 being the least amount of pain and 10 being the most or highest amount of pain.  Since each person has a different level of pain tolerance, everyone can score differently on the scale.   For example, a 5 for me may be a 10 for someone else. Because of this difference and the fact that it is a self-reporting score, medical professionals can only use this as a guide. 

Example of a pain scale:

Chart, box and whisker chart Description automatically generated

Panic Attacks – Are extreme fear, dread, and/or anxiety that comes on suddenly due to a perceived threat.  Some symptoms of a Panic Attack can include:

Chills

Sweating

Ringing in the ears

Racing heart rate

Tightness in the chest

Elevated blood pressure

Muffled sounds

Difficulty breathing

Difficulty thinking

Difficulty speaking

Postural – Refers to the position of the body

Postural Orthostatic Tachycardia Syndrome (POTS) – This is a disfunction of the autonomic nervous system. Some of the symptoms include:

An increase in heart rate when changing positions from laying to standing or sitting to standing.  This increase can be no less than 30 beats per minute.

Fainting/passing out (or near fainting/passing out)

Blood pooling in your extremities (red splotchy skin)

Fatigue

Brain fog/memory issues/difficulty concentrating

Pain

Mobility issues

Drastic decrease in blood pressure when changing positions from laying to standing or sitting to standing.

Extremely low blood pressure as your normal blood pressure reading.  Medical professionals typically will need to take your blood pressure a few times.

Heart palpitations

Dizziness/lightheadedness

Weakness

Fibromyalgia

Touch sensitivity

Headaches/Migraines

Temperature regulation issues

Difficulty sleeping

Difficulty with eyesight

Anxiety

Shortness of breath

GI issues (Nausea/vomiting/diarrhea/constipation)

Mast Cell Activation Disorder

Light sensitivity

It is very important to know that each person diagnosed with Postural Orthostatic Tachycardia Syndrome my experience different symptoms that are not listed above and not everyone will have all of the above symptoms.  The one symptom that everyone with Postural Orthostatic Tachycardia Syndrome will have in common is the increased heart rate upon changing positions.

Syndrome – A collection of symptoms

Syncope – Fainting/passing out

Tachycardia – Rapid heart rate

Urinary Tract Infection (UTI) – This is an infection that can be in any part of the urinary system, kidneys, bladder, urethra, or ureters.  It is important to know that the infection can be in one part or a combination of parts of the urinary system. 

Chapter 2 – Let Me Introduce Myself

Now that the boring, educational stuff is over let me tell you about myself.  This will be the shortest chapter in the book as I dislike speaking about myself.  I feel like there is nothing spectacular about myself and that if I speak about myself people will get bored quickly.  So here goes nothing, feel free to take a nap a skip this chapter.

My name is Carrie Allen and I am an average person just like you.  There is nothing about myself that makes me different or makes me stand out in a crowd, with the exception that I have four invisible illness.  I am a 44-year-old, white, female.  I am 5 feet 4 inches tall and currently weighing in at 136 pounds (the heaviest I have ever weighed).  I have given birth to one child, who also has chronic, invisible illnesses. (I will go into her story later in this book). I was adopted from birth and have no medical knowledge of my birth family. Therefore, when completing medical forms and they ask for Family Medical History that part gets left blank.

At this point in my life, I have been diagnosed with the following Chronic, Invisible Illnesses: Ehlers Danlos Syndrome (EDS); Postural Orthostatic Tachycardia Syndrome (POTS); Anxiety and Mast Cell Activation Syndrome.  I have also been diagnosed with the following allergies: gluten; dairy; grass; Penicillin; Benadryl; marijuana; bonding cement; latex; bandage adhesive; lavender and chlorine.  I should also mention that most local anesthesia doesn’t work on me.  Which means for dental work and minor surgeries I am not numb for the procedure.  Before I go into my background and how I got diagnosed with each of the illnesses I need you to keep in mind that this is truly based of my experiences and my symptoms, everyone is going to have a different story.   I am going to discuss my illness in the order that I was diagnosed. 

Chapter 3 – Ehlers Danlos Syndrome (EDS)

Ehlers Danlos Syndrome is an inherited, multisystemic syndrome.  Inherited meaning I was born with it; someone else in my family background has it or had it and it has been passed down the generations.  Multisystemic means that this illness can affect many systems of the body.  There are ten major bodily systems: skeletal, reproductive, nervous, muscular, endocrine, cardiovascular, lymphatic, respiratory, digestive, and urinary.  For many living with Invisible, Chronic Illnesses, Ehlers Danlos Syndrome is the first illness diagnosed, and then the list continues from there.

In my situation, I do not have any information regarding the inherited part, not only because I am adopted but this illness was not readily diagnosed in the past.  I can tell you that I have passed this illness onto my daughter.  I have six bodily systems that are affected by Ehlers Danlos Syndrome.  The one that is affected the most is my muscular system.  My muscles are very weak, no matter how much I try to strength them they just remain weak.  Weak muscles lead to skeletal issues such as joint dislocations.  Weak muscles also lead to cardiovascular issues because the muscles around the heart are not strong enough to pump the blood from my heart throughout my body.  My digestive system gets affected from time to time.  If the muscles surrounding my digestive system become relaxed my intestines tend to stretch out and do not continually move stool through.  The more relaxed the muscle get the more constipated I get.  Then when the muscles decide to work, they struggle to push through the constipation.  My last bodily system that is affected is the urinary system.  When the muscle around the urinary tract become relaxed, I tend to not have the urge to use the restroom, or if I do use the restroom, I don’t release all the urine that has stored up.  Both situations cause Urinary Tract Infections.