Invisible Illness – What You Need to Know
The Center for Disease Control estimates that around 117 million adults live with a chronic illness. Many of those illnesses are referred to as an invisible illness because they cannot be detected by the untrained eye… even then, it can be difficult to spot.
Many patients live silently with their disease. Diseases often come with stigmas as is the case with Inflammatory Bowel Disease. The symptoms alone are not spoken of because for many, their symptoms begin in the bathroom. As they say, poo is taboo and no one talks about their bowel habits in polite society. Because of this, just talking with your doctor about it can be embarrassing.
Another problem with the stigmas is that patients often fight their battles alone. They are either isolated by friends or family members who don’t “get it.” Many patients are accused of faking it. With others constantly telling them it’s all in their heads, patients begin to believe this lie. Another reason for isolation is that patients aren’t open about their problems and will push others away for fear of rejection.
Masters of Disguise
While chronic illness cannot always be seen, it most assuredly can always be felt by the patient and their caretakers. Like ninjas, patients become masters of disguise. They learn how to wear their makeup in such a way to cover their tired faces. They learn tricks for fixing their hair (which may not have been washed for several days due to lack of energy). They wear clothes to cover things like scars, ostomies, PICC lines and chest ports.
Prepared for Everything
You may even run into patients who appear to be prepared for anything. Got a paper cut? They’ll hand you a bandage, disinfectant and an antibiotic ointment. Headache? We’ll have a variety of pain pills to hand you as well. Nausea? No problem there either! We have meds for that, too. Wet wipes? Yep! I know that not all “prepared” people have a chronic illness… but a well-seasoned patient most definitely will.
Life with an Invisible Chronic Illness
Like any good ninja, a chronic illness patient can masterfully blend into society over time. Some, but not all, are able to hold jobs. They may seem calm and collected when you see them at work, but you won’t see the night before. Many patients will spend most of their night lying awake in pain. Some of them can’t sleep due to the medications they take. Others will spend half the night vomiting.
On top of the physical aspect of everything, mental health is also affected. Patients may deal with anxiety and worry about what life has in store for them the next day. Many patients have to be put on anti-anxiety or anti-depressants. They may put on a good face in public, but behind the scenes you may find them worried, anxious and overwhelmed.
Medications are another issue. Patients sometimes have trouble managing their medications especially when taking multiple different medications. There’s also the cost of the medications. Some treatments will cost $5,000 or more per dose. Even with insurance, medications are difficult to afford.
This week (September 26 – October 2) is Invisible Illness Awareness Week. Invisible illness is all around us. More than likely, you know someone who is battling a battle every day. Help raise awareness for invisible illnesses by starting conversations. The more you talk about it, the more awareness can take place. The more awareness that takes place, the better our chances of finding a cure and coming to a better understanding of the needs of patients who feel alone in their battles.