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Not all illnesses are visible

By Destiny Meilleur

Invisible and Dynamic Illnesses

Invisible illness is a term used to describe a sickness that people are struggling with, that may not outwardly present itself. Dynamic illness are illnesses that can vary in severity from day to day. For example, some people with dynamic illnesses are ambulatory wheelchair users or use walking aids occasionally.

I have a chronic, invisible and dynamic illness. 

A chronic illness is a mental or physical illness that persists for a long period of time. Mine started in January of 2021. I woke up without the ability to hold all of my body weight on my legs, and throughout the months it has gotten worse with severe stomach issues, frequent vomiting, fainting, dizziness, motion sickness and more. 

I am currently waiting for diagnostic testing for Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). 

EDS is a genetic condition that affects the connective tissue of the body and the body’s levels of collagen. EDS comes with many symptoms, some mild and some severe. The symptoms I experience are difficulty swallowing, blood pooling, frequent sprains and dislocations, joint and muscle pain, muscle weakness, and GI issues. 

It is a rare condition. One in five-thousand people have EDS. In order to get diagnosed, people can see a rheumatologist or a geneticist for testing.

POTS is an autonomic nervous system and a sympathetic nervous system condition. 

The autonomic nervous system is responsible for automatic control and regulation of important bodily functions such as the ‘fight or flight’ reaction. 

POTS is a disautonomia condition. 

This comes with many symptoms such as poor body temperature regulation, fainting, dizziness, being lightheaded, rapid heart rate, brain fog and chest pain. In order to diagnose POTS people can see a neurologist or a cardiologist.

There are many ways to distinguish people with chronic illnesses from a healthy individual.

Symbols such as the sunflower can be worn to help show people that someone has a chronic illness that may not be visible but they still might need assistance. Many people wear a sunflower lanyard around their neck to show they are chronically ill. Watching out for someone with a sunflower lanyard can be really beneficial to that person. 

Another symbol commonly used is the spoon. 

‘Spoonie’ is a term used for a person with a chronic illness. Something people with disabilities use to describe energy is called The Spoon Theory. The Spoon Theory is a way to describe what living with a chronic illness is like. Spoons became a symbol of chronic illness after Lupus blogger Christine Miserandino, used spoons to explain her lack of energy after fighting with her chronic illness. 

‘Spoonies’ have a given amount of ‘spoons’ each day. Spoons equal energy. Each activity in a day uses spoons. Even a simple task like getting dressed can use a few of the spoons a person had for the day. The number of spoons someone has in a day is entirely dependent on how they feel when they wake up in the morning. As such, the amount of spoons a spoonie has varies drastically from day to day.

In the last few months I have noticed many people don’t fully understand the concept of dynamic illnesses. I get told: “oh, you don’t look sick,” and: “You must be faking.”

Some days are better than others. Some days I can get out of bed and I can get dressed and brush my teeth. Some days, I can barely get out of bed to do anything. 

Some days, I have lots of spoons and some days I have no spoons at all. 

I have also received similar treatment from doctors. This is called Medical Gaslighting. I have been told: “This is all in your head,” “You are completely healthy,” and “You don’t need to worry about this for another five years.”

This is very discouraging and hard for someone going through a mysterious illness. It makes you think it is not important and that your struggle is not valid.

Everyday is a new day and each day has its own new challenges. I use walking aids everyday which was something challenging to get used to. Trying to plan events is challenging when you don’t know how you’re going to feel when you wake up every morning. 

Finally, after months without answers as to why my health has been declining, my doctors believe we are getting close to a diagnosis and some answers. A diagnosis means there are more treatment options and we can better understand my symptoms and challenges.

Everyone has their own challenges and sometimes, those challenges are not outwardly visible. 

Remember that when you see someone who may use a wheelchair, even though they can walk sometimes. Or someone asking for accommodations who might seem like they don’t need them. 

A lot of challenges are faced on the inside.

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