Invisible Illnesses – Incurable Diseases

faking being well

Those with incurable diseases with little to no outward appearing symptoms will completely understand this icon. When you feel horrible 85-99% of the time, but it doesn’t show externally, it can be exhausting. It feels like you wear a mask daily because no one understands. No one seems to know that you struggle to get through each and every day. You tend to lie a lot to those around you, because no one wants to hear you complain all the time. The most common lie is “I’m Fine.” You have to be fine when you don’t look sick, or people will unnecessarily judge you. Common stigmas that people with invisible illnesses and incurable diseases face are ‘You don’t look sick.’ ‘You look fine to me.’ ‘I think (he/she) is faking it.’ ‘Just get over it, it’s all in your head.’ These are just examples of things we can hear and face every day.

But the fact of the matter is, it’s not all in our head. The struggle is real. Here are some staggering statistics and facts from the website http://www.invisibleillness.com, where they seek to spread awareness about invisible illnesses.

  • Nearly 1 in 2 Americans (133 million) has a chronic condition.
  • By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.
  • That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. 
  • Sixty percent are between the ages of 18 and 64 
  • 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases
  • In the United States 4 in 5 health care dollars (78%) are spent on behalf of people with chronic conditions. The Growing Burden of Chronic Disease in American, Public Health Reports, May June 2004 Volume 119 Gerard Anderson, PhD
  • Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)

Invisible illnesses are often chronic conditions, but they range in intensity from moderate to severely terminal. Some examples of invisible illnesses are: chronic migraines, chronic backaches, lupus, fibromyalgia, diabetes, HIV/AIDS (which does not always show symptoms for the first few years), schizophrenia, heart disease, cancer, asthma, chronic obstructive pulmonary disease, and more. Many of these diseases are extremely prevalent in today’s society. There are many different types of cancer, as well as their individual research groups, and HIV/AIDS has had tons of exposure in the media. But these types of chronic conditions can come with external symptoms later on, some of which are created by medicinal side effects.

Look sickIt is easier for people to feel sympathy for those that truly may look sick or disabled, such as someone with the flu who is throwing up, or someone with a broken leg in a cast, or someone who has lost their hair due to chemotherapy and radiation. But for those of us who have invisible illnesses such as joint/muscle aches, migraines, blood disorders, diabetes and more, without the external symptoms, people lack the ability to understand. Sometimes they simply don’t want to understand. Illnesses with visible symptoms can garner national attention to raise awareness, but often illnesses without symptoms receive little to no attention. However, these illnesses are just as important. The Invisible Illness Week website tells us why:

  • The divorce rate among the chronically ill is over 75 percent. National Health Interview Survey
  • Depression is 15-20% higher for the chronically ill than for the average person – Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154.
  • Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides; Mackenzie TB, Popkin MK: “Suicide in the medical patient.”. Intl J Psych in Med 17:3-22, 1987
  • and more than 50% of these suicidal patients were under 35 years of age. Michalon M: La psychiatrie de consultation-liaison: une etude prospective en milieu hospitalier general. Can J Psychiatry (In French) 38:168-174,1993
  • Chronic diseases—heart disease, cancer, chronic obstructive pulmonary diseases and stroke—are the leading causes of death in the United States. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)
  • Seven of every 10 deaths in the U.S. are caused by chronic conditions; heart disease is the leading cause of death among both men and women, followed by cancer and chronic obstructive pulmonary diseases—diabetes is seventh. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)
  • Chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)

Sadly, chronic pain and illnesses can’t simply be fixed by taking a pill {Professor Stephen Gibson, President of the Australian pain society). And because pain often shows no physical signs, people including health professionals will often not believe sufferers are in pain which is one of the reasons they are at such high risk of depression, anxiety, social isolation and relationship breakdown (Coralie Wales, President of Chronic Pain Australia). That means that everyone is fighting some sort of battle we know nothing about. And yet society still doesn’t seem to understand that judgement and hatred should not be shared based on something you know nothing about. Don’t yell at the person parking in the handicap space who doesn’t have a wheelchair or cane. You have no idea what is going on in their body. Don’t ask them to just get over it. Don’t tell them it is all in their head, or that they should be ashamed of themselves.

Everyone reacts to illnesses differently, and although some may share similar symptoms, no one person is the same, so why should their reactions to illnesses and medications be the same? We need to spread the word about the ‘invisible ills’ and speak loudly about tolerance for others. By educating ourselves and those around us, hopefully we can inspire more research, and more tolerance for others. Please don’t assume that someone is fine, just because they say they are or because they look ‘normal’. It very well may be a mask that they are wearing, even though they may feel like just breaking down.

Often, I personally struggle with the mask I wear. I go to work and out with friends and my boyfriend, and I get exhausted easily and lack strength in my muscles. It makes it hard to do certain things. But I always smile and say that I am fine. Even when I am not. It’s easier to lie than it is to explain that I physically hurt almost 100% of the time, or that I would prefer to sleep for about 18 hours straight every day just so I can feel like I have a little bit of energy when I am awake. Lying is easier than saying I just want to cry myself to sleep some nights because I feel completely alone, even though others have the same disease that I have. Every battle is different, and you can’t win them all. Sometimes I get home after work and burst into tears, even when I have had a ‘good’ day. Well, a good day for me that is. And the tears come because I am unused to having too many ‘good days’. Some Saturdays I sleep almost all day after going to bed the night before. I waste my weekend, but at least I feel rested for the first time all week. Other days I lay in bed or sit at my desk, biting my tongue because I hurt so bad and the medicines don’t help unless they knock me out. My temper has gotten shorter, and some days I am angry at the universe. And yet I get up every day and attack the day again, even knowing that I have to put on my mask. I don’t give up, because giving up isn’t an option for me. I want to do more than just exist. I want to be more than my illness. I want to have a social life. I want to live.

So, although it takes courage, and I try again, each and every day to have a good day. And I am not dying, so they are all good days. The pain, stress, irritations, and complications that I have on bad days remind me that I am still breathing. And if I am still breathing, I am not failing. I can do this. We can do this. Don’t become a victim. Don’t victimize others. Make your life worth living. It will be hard, but I know it will be worth it.

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