ONE AT A TIME
Chronic illnesses are very real conditions that millions of men and women and children live with around the world.
Often times they are invisible so that while someone may be suffering excruciating pain, there is no external symptom or sign of the cause of some torment.
These diseases and disabilities are commonly misunderstood and often, little is known as to the cause. Therefore, these conditions rarely have a cure – despite what you may hear from television advertisements or from your cousin twice removed.
Those lucky enough to receive a diagnosis are often let down by the immediate disappointment of a doctor not knowing any next steps.
Conditions like Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Postural Orthostatic Tachycardia Syndrome, Ehlers-Danos Syndrome, Chronic Lyme Disease, Crohn’s Disease, Arthritis, Irritable Bowel Syndrome, Lupus, Depression, Multiple Sclerosis, chronic migraines and so many more are life-changing.
When doctors give these diagnoses a world shatters and more lives than just one are shattered.
So often, the people most affected by a diagnosis are the loved ones who care for those who are often housebound or bedridden. There is an immense burden placed on caregivers who have to do everything for the chronically ill person in their life when their illness is at its most acute phase.
Many living with an invisible illness can feel isolated as it can be very difficult for friends and family to understand what they are going through. This is amplified when the medical community is at a loss for what to do to help their patients. Many are not taken seriously or are not believed by loved ones and by doctors.
As an illness takes over one’s life, even the smallest things can seem like massive undertakings. As a result, relationships can fall by the wayside, as the sick friend has no energy to reach out and the healthy friend feels hurt by the lack of presence in their life and tires of waiting for plans to finally work out.
Only the best of friends and relationships are maintained in the wake of chronic health problems.
Some marriages crumble in the wake of a diagnosis as the healthy partner cannot cope with the changes in the person they once knew.
Families are torn apart as they cannot understand why their son or daughter is at home all day. Assuming it is sheer laziness or disinterest, they make judgements and accusations that are incredibly hurtful.
The person who was once healthy and active and full of life changes.
They cannot do all the things they used to. Getting out of bed can be enough of a challenge.
Interests will change and dreams will readjust.
There is a grieving process that those who are ill, and those who love them, must go through. The same stages of grief apply. The healthy life has died and a new life, a readjusted life, has begun.
Grief reappears when it is least expected and everyone experiences it differently.
UNITY IN DIVERSITY
There is no one common experience of chronic health problems. What one person goes through is never the exact same as the next. There are different symptoms to different degrees of severity. Certain sensitivities one person has may not apply to another. Certain pills and treatments that work for one person, may not necessarily work for someone else – even if they have the same diagnosis. Often times, patients have many different conditions at one time that combines to create a unique experience and symptoms.
Despite these differences, there is a common bond between those of us who experience chronic illness in its varying forms and varieties.
We understand each other on a level that is not found with many of our loved ones. An amazing online community has developed among many different pain warriors.
It is common to come across the word spoonie if you spend any time online researching chronic illness.
The word refers to the internet famous Spoon Theory.
The theory states that each individual has a certain number of spoons each day given their health on a particular day. So if someone has Fibromyalgia and Chronic Fatigue Syndrome they make wake up with ten spoons. But each activity they accomplish in their day requires a certain number of spoons. One spoon to get out of bed. Another to get dressed. Two to shower. Already you can see that just the most basic, daily activities can be greatly taxing for anyone with a chronic illness. You may go into a spoon deficit if it is a particularly bad day. Or you may have a surplus of spoons if its a good day.
Each day is unpredictable in regards to the number of spoons, but what is consistent is the fact that spoonies need to be very, very careful in how they spend them.
That is why your friend may say no to meeting for coffee, or your wife hasn’t done the laundry yet. Little things are often very big things.
Pretty Sick Designs wants to spread awareness about invisible illness and chronic disease. With a sweatshirt that says ‘Always Tired’ you are letting the world see your fatigue – its a little more visible. Plus, we hope that it sparks a conversation.
We hope that when people ask you where you got your clothes from or what they mean you’ll tell them. Tell them the truth. Tell them that you are sick and that your symptoms are real. Talk about how your life has changed. Guaranteed that they will come across someone soon in their life that is suffering too. Hopefully, they’ll be a bit more compassionate and informed when that happens.
There are so many millions of people suffering in silence. Let’s end the stigma. Let’s not be quiet anymore.
And when someone tells you “Fibromyalgia isn’t real” (or something to that effect) stand up tall and tell them just how real it is.
Together, let’s make invisible illness a little more visible!
National ME/CFS Action Network (Canada)
Millions Missing (Canada)