Living with invisible illnesses– People don’t understand what they can’t see. How do others’ reactions affect you and your health? Do you feel like you are always having to defend your illness?
In this post, I want to address what an invisible illness is, what it’s like living with an invisible illness, and how other people’s reactions can affect those of us with these types of illnesses.
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What is an Invisible Illness?
Invisible Illness is a broad umbrella term that covers numerous chronic illnesses that do not show outward signs visible to other people.
According to one study, more than 125 million Americans have at least one chronic condition (defined as a condition that lasts a year or longer, limits activity and may require ongoing care) and nearly half of those have more than one. (This is from an article you can read in full here)
The article went on to say that: These chronic illnesses often share one major characteristic: they are not visible to an onlooker; thus the term “invisible illness.”
Examples of Invisible Illnesses
There is a vast number of chronic conditions that fall under the term Invisible Illnesses. The list would be too long to name them all in this post.
However, I would like to list some of the common ones and maybe a few not so common ones.
- Allergies and Food In-tolerances
- Rheumatoid Arthritis
- Chronic Fatigue Syndrome
- Fibromyalgia and Chronic Myofascial Pain
- Depression and Mental Illness
- Diabetes and other Blood Sugar Issues
- Digestive Disorders (such as; IBS, colitis, Celiac, etc.)
- Headaches, Migraines, etc.
- Heart Conditions
- Lyme Disease
- Multiple Sclerosis
- Neurological Diseases
- Sjogren’s Syndrome
- Chronic Pain due to many underlying causes
As I already stated this is not a complete list of every invisible illness. Also stated previously most people have more than one of these conditions.
I personally have 7 on the above list and a few that are not on that list. I will discuss more about these specifically a little bit later.
Living with Invisible Illnesses
Dealing with the physical discomforts, limitations, and changes in your life are only part of the daily struggle of living with invisible illnesses.
Along with accepting your diagnosis, and learning to live with a chronic condition, you also will face dealing with feeling sick while looking fine.
People don’t easily understand what they cannot see. Friends and even family sometimes find it difficult to understand why you always feel sick, tired or in pain when you don’t look sick.
Therefore you also must deal with hurtful looks, questions, and comments. Sometimes from people that may have good intentions, but it’s not easy to cope with it constantly.
Knowledge is power
Help people understand about your conditions. Explain to your family and friends exactly what your condition is and what you deal with daily.
Don’t be ashamed to talk about your health! You deserve to live your best life, no matter what your health condition is.
Each invisible illness carries its own set of symptoms, changes in daily routines, and rules to live by in order to cope. Depending on your diagnosis will determine your own lifestyle changes.
These lifestyle changes may affect your schedules, routines at work and home, as well as your social life. People around you will notice, so explain to them why you have changed.
You will need the moral support of people around you, not their criticism. They cannot understand or help if they do not know what is happening with you. Give them the knowledge/power to help you.
Labeling and Stigmas
Living with invisible illnesses can be more difficult than other obvious diseases simply because of depression, feeling hopeless, and feeling trapped in an ailing body.
All of those feelings can also be brought on with illnesses that aren’t “invisible” to people around you.
However, with invisible illnesses also comes the labeling and stigmas brought on by people that judge your condition only by your outward appearance.
Invisible illness sufferers are too often labeled as “lazy” because they rest more or they are seen on the couch and in bed more often. People assume they can’t really be sick when they look so good.
When trying to explain their illness they are met with the most common response of “but you look great!”. Sufferers hear the whispered comments, see the rolling of eyes, and the looks of total disbelief all while their illness wreaks havoc on their body.
A few most common invisible illnesses
Now let’s discuss more information on a few of the most common of the invisible illnesses. The average person usually recognizes the following illnesses, but I also want to offer information about living daily with these invisible illnesses.
Too many to list them all
While I’d love to list all the invisible illnesses, it would make this article impossible long to do so.
For that reason alone, I have chosen three of the top illnesses that I feel impacts someone’s daily living the most while remaining invisible to other people.
1. Diabetes: According to the CDC
Facts and statistics from the CDC 1
Diabetes Fast Facts
- Total: 30.3 million people have diabetes (9.4% of the US population)
- Diagnosed: 23.1 million people
- Undiagnosed: 7.2 million people (23.8% of people with diabetes are undiagnosed)
Prediabetes Fast Facts
- Total: 84.1 million adults aged 18 years or older have prediabetes (33.9% of the adult US population)
- 65 years or older: 23.1 million adults aged 65 years or older have prediabetes
Most people probably think living with diabetes simply means you don’t eat sugar, candy, and desserts. Oh, how wrong they are!
Daily life as a diabetic means a constant strategy of monitoring your blood sugar levels, taking medicine/insulin, and a strict diabetic diet. The diet includes no sugar, low carbs, adjusted amounts of protein and fat, and eating meals and snacks on a schedule.
This is not an easy life! It requires meal planning, staying on a schedule, and daily exercise. This can become very frustrating! Believe me, I know from personal experience!
2. Chronic Pain
Chronic pain is a category of numerous conditions that cause pain. Chronic pain is a broad term used as an invisible illness.
However, there is a condition known as Chronic Pain Syndrome which I will discuss here. Pain is our body’s normal reaction to injury or that something is wrong. But if the pain continues after the injury is healed, up to 3-6 months or more, then it is considered Chronic Pain Syndrome (CPS).
CPS is usually accompanied by depression and anxiety. The pain along with depression and anxiety can interfere with performing daily activities.
According to WebMD 2 CPS often starts with an injury or painful condition such as:
- Arthritis and other joint problems
- Back pain
- Muscle strains and sprains
- Repetitive stress injuries, when the same movement over and over puts a strain on a body part
- Fibromyalgia, a condition that causes muscle pain throughout the body
- Nerve damage
- Lyme disease
- Broken bones
- Acid reflux or ulcers
- Inflammatory bowel disease (IBD)
- Irritable bowel syndrome (IBS)
- Endometriosis, when tissue in the uterus grows outside of it
The article on WebMD 3 goes on to list some of the symptoms.
CPS affects your physical health, your emotions, and even your social life over time. The pain can lead to other symptoms, such as:
- Poor sleep
- Feeling very tired or wiped out
- Loss of interest in sex
- Drug or alcohol abuse
- Marriage or family problems
- Job loss
- Suicidal thoughts
Some people with CPS need to take more and more medicine to manage their pain, which can make them dependent on these drugs.
Chronic pain can seriously make living with an invisible illness a huge challenge. Imagine never being completely pain-free. Then add the other symptoms and emotions brought on by CPS. Not to mention the stigmas and judgment of people who can’t see or understand your illness and it all makes your daily life a difficult struggle.
3. Mental Health
Mental health is another category with numerous individual conditions. Mental health has also become a serious concern in our country, and probably other countries as well.
The category of mental health and illnesses covers a list of conditions too long to cover them all in this one article.
Although some of the more familiar mental health conditions include depression and anxiety, PTSD, ADHD, and borderline personality disorder.
Each one of those listed can be a challenge to live with daily, but many people have more than one. To make it even worse, the majority of people today can’t afford the medical care or medicines that mental illnesses require.
The List could go on and on
The list of invisible illnesses could continue to go on and on. But my intention with this article is not to list every invisible illness out there.
My main focus for this article is about living with invisible illnesses, but I wanted to give some details and background about a few major conditions.
I mentioned earlier that I suffer from several invisible illnesses. Honestly, my diagnosis list is longer than my grocery list.
Daily I live with the following invisible illnesses:
- Type 2 Diabetes
- Heart Disease (3 heart attacks)
- Iron-deficient Anemia
- Lumbosacral spondylosis without myelopathy
- Sacroiliac disorder
- Trochanteric bursitis
- Coronary arteriosclerosis
- Gastroparesis with diabetes mellitus
- Cerebrovascular accident (stroke)
- Gastroesophageal reflux disease
- Chronic obstructive lung disease
- Depressive disorder
- Chronic pain due to several of the above conditions
More Awareness Helps
Spreading more awareness about these and all invisible illnesses will always help. Awareness helps the sufferers as well as the friends and families of those that suffer from these illnesses.
If you suffer from an invisible illness explain your condition to your friends and family.
Perhaps you don’t suffer from one of these illnesses, but you notice a change in a loved one. If you do notice that a loved one seems different, less social, depressed, or more withdrawn then ASK them if they are OK.
Knowing that someone cares can go a long way in making a person feel better about what they are dealing with. Simply noticing and caring enough to ask how they are doing is a big deal to a sufferer.
Living daily with invisible illnesses can be challenging. Much like any other chronic illness, it can require changes in your daily life and/or lifestyle.
Feeling sick on the inside while looking fine on the outside causes challenges due to stigmas, labels, and criticism from others around you.
Knowledge and awareness are both very important! Both are important for the one that suffers from the illness as well as for the family and friends.
Speak up, find your support system and use it! You are not alone in this fight!
Now it’s your turn!
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Until next time,
SharonReferences and citations:
- Centers for Disease Control and Prevention. National Diabetes Statistics Report, 2017. Atlanta, GA: Centers for Disease Control and Prevention, US Department of Health and Human Services; 2017