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When you’re sick, really sick, nothing matters. All you want is to get your life back. All you want is for your loved ones to have the old you again. But if there is any comfort to be found, it’s that you’re not going through your illness alone. You have the support and understanding of your friends and family. You experience the sometimes remarkable compassion of total strangers.
Unfortunately, though, this is not the experience of everyone who suffers from serious, chronic illnesses. When the illness is invisible, empathy and caring can quickly give way to judgment, even to condemnation. And with 10% of all Americans currently estimated to have some sort of invisible illness, that means there are millions of people across the US who may be suffering alone.
What is an Invisible Illness and Why Does It Matter?
An invisible illness is one whose effects can be equally as debilitating, as potentially life-threatening, as the conditions we have come to recognize virtually on sight, from cancer and Parkinsons to cerebral palsy and advanced Alzheimers.
With an invisible illness, you simply don’t have those tell-tale signs, the wheelchair, the bald head, the drawn hands, and noticeable limp, that visibly prove you’re “really” sick. And that makes sufferers especially vulnerable to accusations that they’re exaggerating or, worse, faking their symptoms.
Sufferers may be denied legal protections to which they’re entitled under the ADA. Employers may refuse to grant the accommodations their workers need, such as flextime or telework options. Landlords may refuse to make apartments and houses more accessible.
And the toll on your personal life can be even worse. Even your closest family members may not be able to understand what you’re going through. Loved ones may grow impatient. They may distance themselves. They may offer well-meaning but entirely clueless advice, thinking they understand what is “wrong” with you, when really they’re lightyears off.
They might even tell you you could get better if you “really” wanted to. And you might even feel guilty for “failing” to do so.
Who Do Invisible Illnesses Affect?
Invisible illnesses can impact anyone, at any time. It doesn’t matter your age, gender, ethnicity, or socioeconomic status.
Consider adrenal fatigue syndrome. Though it can affect both genders, middle-aged men seem to be most often impacted. And because the symptoms are often so non-specific, ranging from joint aches to fatigue to diminished sex drive, it is often dismissed as just another sign of aging.
This is one of the most significant challenges that men battling invisible illnesses face. When you can’t readily see the signs of sickness or injury, it’s easy to dismiss their severity, to tell the sufferer to “toughen up,” and because men are expected to be strong, vital, and vigorous always, this can take a particularly terrible toll.
But it’s not just men who are affected by invisible illnesses. In fact, though millions of men worldwide experience some form of invisible illness, these conditions most often impact women. And that’s not good news, because women are already at a distinct disadvantage when it comes to these conditions.
Their complaints and concerns are far more likely to be dismissed or minimized by healthcare professionals than those belonging to men, attributed to emotional or psychiatric disorders. So when you add to the mix a condition that can’t be seen, photographed, or detected in lab results, women with invisible illnesses are really behind the eight ball, suffering needlessly because of a general lack of awareness or understanding.
This is why learning to be aware of yourself, understanding your experiences and your needs, and knowing how to advocate for yourself is imperative. Remember that you are not just a patient. You are the customer. Your care provider works for you, not the other way around.
What is to be Done?
If you are contending with an invisible illness, there are a number of things you can do to improve not only your health but also your relationships and overall quality of life.
Finding Care
The first and most important thing is to find a healthcare provider who listens and understands. That can be difficult, to be sure. The current provider shortage has undermined the quality of care in the US, but you deserve to be heard and you deserve to be helped. And that means not stopping until you find the doctor, nurse, or PA who will do just that.
Being Heard
It’s not just finding a healthcare provider who hears you. It’s also about making sure that your family and friends hear you, too. You’re going to need to sit down with them and have a long talk. Maybe many of them.
And you’ll need to keep talking until you’re sure you’re heard. This is also the time to separate the wheat from the chaff. The people who really love you, the ones who really deserve to be in your life, will make the effort. The ones who won’t show themselves to the door.
Knowing Your Rights
Taking care of yourself means understanding and fighting for the rights and resources that you deserve. That means you can’t be discriminated against, whether in work, school, or housing, just because you have an illness.
In fact, conditions that you might not expect, such as alcohol addiction, may qualify you for ADA protections. After all, these illnesses can often be every bit as debilitating as cancer or heart disease.
Practicing Self-Care
Living with any illness is challenging, but living with an invisible illness is especially so. Protecting your health and improving your quality of life means integrating self-care into your daily routine.
Focus on managing your stress, because there are few things more damaging to your overall health than chronic, unremitting stress. You might, for example, integrate some gentle exercise, such as a brisk walk, into your workday to help you shed those office stressors.
You can also work on ridding your body of those contaminants that are dragging you, and your immune system, down. Consider, for instance, a mild detox. This will help you purge your system not just of contaminants, but also of the irritants and allergens you may never have realized were a problem for you.
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