What Invisible Means
An invisible illness is defined as a “physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker…Invisible disabilities are such symptoms as debilitating fatigue, pain, cognitive dysfunctions and mental disorders, as well as hearing and eyesight impairments and more” (Invisible Disabilities Association). You can be born with an invisible illness, or develop one later on in life.
Invisible illnesses exist in many forms. They can be mild, from minor allergies or food intolerances, to cancer or arthritis. Invisible illnesses can also affect almost any part of the body. Many mental disabilities do not have a physical manifestation, but can still hinder a person’s life. However, just because an illness is not visible does not mean it is not serious. For example, untreated diabetes can require amputated toes or feet–in severe cases it can cause death.
It Doesn’t Feel Invisible
Some invisible illnesses are more manageable than others. Depression caused by circumstances can sometimes ease when circumstances change. Mild digestive problems can be avoided by changing your diet or avoiding irritants. But some cases are much worse than others, and making living a healthy and happy lifestyle almost impossible without serious medical assistance, rest, or hospitalization.
Social anxiety or depression can make it difficult or impossible to leave your home. Chronic fatigue or pain, or diseases like multiple sclerosis make even the simplest movements painful or impossible. Other times, these diseases may be under control and the person with the disease looks and acts “normal.” A “normal” or “good” day does not mean the symptoms are gone for good. It does not even mean that the whole day will pass without incident.
The Spoon Theory, created by a woman named Christine Miserandino, has become a rather popular way of explaining how seriously an invisible illness can affect your life. Christine suffers from Lupus, a disease of the immune system that can present multiple ways in different patients. When a friend asked what life with Lupus is like, Christine handed her a small collection of spoons. Each spoon represented energy, and each task during the day would require a certain number of spoons. Once she was out of spoons, she could no longer do anything for the rest of the day. “I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted” (Miserandino).
Christine used the spoon theory to explain her experience, but it can be applied to any number of invisible illnesses. The illness gets even more difficult to manage when others around you expect an endless supply of “spoons,” and can’t quite understand when you’ve simply run out.
The Spoon Stigma
Because an invisible illness doesn’t make you “look” sick, it can sometimes cause issues at work or even moving through the world in general–people may harass you for parking in a handicapped spot without “looking” like you need one. Others may believe you’re faking your symptoms for any variety of reasons. Naomi Gingold explains in an article for NPR: “When a disability isn’t immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment” (Gingold).
Gingold references the work of Joyce Smithey, a lawyer who specializes in labor and employment–and Smithey says these problems are more common than expected. Some employers do not even have policies that accommodate invisible illnesses. In a worst case scenario, this can make finding work very difficult or impossible for those who have been diagnosed with problems like fibromyalgia or Lyme disease. For those with mental illness, there is an added fear associated with even admitting you have the illness in the first place.
Consistently being disbelieved or doubted, or having your illness ignored, can cause other problems as well. Invalidation is always painful, but when it comes from places of power it can aggravate or cause depression, or even make you start to doubt your symptoms yourself. Without “belief” from your friends or family, you might start skipping appointments or pushing yourself past what you’re capable of. If this doubt comes from the workplace, you may be forced to choose between taking care of yourself and losing your job.
This can make symptoms worse in a variety of ways. If your disease affects your immune system, this can make you susceptible to even more illnesses, from colds to the flu or even pneumonia. Left untreated, even the smallest bug can sometimes develop into something much more dangerous. If you are skipping therapy for a mental illness, it could become difficult or impossible to manage.
Surviving and Thriving With An Invisible Illness
As Christine explains in the spoon theory, you can never let go of your spoons–in other words, living with an invisible illness means you never get to forget that you are sick. This can be incredibly draining, and it often puts the “burden of proof” on someone who is already suffering. There are some ways to alleviate the burdens that come along with an invisible illness.
In her article for the Huffington Post, Lisa Copen outlines five interpersonal tools that can help. These tools rely on a support system of friends and family who not only believe, but understand your invisible illness. A group of people who help make your life easier can take some time to cultivate, and cutting out toxic or harmful relationships is not always easy–especially with family or coworkers. Copen offers some hope in her article, concluding that “You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances — instead of change other people — you’ll be much more personally rewarded” (Copen).
Copen offers advice for both internal and external growth–ranging from that cultivation of healthy relationships, to offering support to others with similar circumstances. Sometimes taking steps towards a healthier self can look negative to others, especially when their own advice can be demeaning or wrong. Examples of this “bad” advice are anything from telling you to “go out more” or “eat better” or “focus less on yourself” (Copen). In these cases, it is essential to discuss the management of your illness with a doctor, who will certainly guide you in the right direction and should help you feel less guilty about ignoring “good-natured” advice. In his article for Everyday Health, Wyatt Myers recommends taking friends or loved ones along to a doctor’s appointment, so they can hear about your symptoms and their management from a trusted professional (Myers).
Measuring success of these tactics is difficult, much like managing an illness without any outward symptoms. Do no be afraid to join a support group of your own, or talk to your doctor or therapist about ways to manage not only your illness, but the secondary issues it may cause as well. If you can’t get out to physically attend meetings, online support or telepsychiatry can be a suitable replacement.
Copen, Lisa. “5 Tools to Cope With Invisible Illness.” The Huffington Post, TheHuffingtonPost.com, 12 Sept. 2011, www.huffingtonpost.com/lisa-copen/living-with-invisible-illness_b_937234.html.
Gingold, Naomi. “People With ‘Invisible Disabilities’ Fight For Understanding.” NPR, NPR, 8 Mar. 2015, www.npr.org/2015/03/08/391517412/people-with-invisible-disabilities-fight-for-understanding.
“How Do You Define Invisible Disability? | Invisible Disability Definition.” Invisible Disabilities Association – IDA, invisibledisabilities.org/what-is-an-invisible-disability/.
Miserandino, Christine. “The Spoon Theory.” But You Dont Look Sick? , 26 Apr. 2013, butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
Myers, Wyatt. “Invisible Illness: When Others Can’t See Your Pain.” EverydayHealth.com, Everyday Health, 11 Nov. 2015, www.everydayhealth.com/pain-management/invisible-illness-when-others-cant-see-your-pain.aspx.