5 Min Read

Coping with an Invisible Illness

Brad Brenner, Ph.D.

When your coworker has a cold, you see her watery eyes and hear her coughing and sneezing. You believe the man behind you in the grocery store is disabled because he’s in a wheelchair. And, you understand your child has broken his arm because an x-ray clearly shows a cracked bone.

With many illnesses, you can see, hear, or feel the symptoms. It’s clear to friends, family members, coworkers, clinicians, and even strangers that you are sick. However, anywhere from four to 26 million Americans suffer from “invisible illnesses” or invisible disabilities. Their symptoms aren’t immediately evident to others, so in addition to their internal suffering, they also endure the anguish of having to prove they have a legitimate medical condition daily. Invisible illnesses are real, and if you’re one of the millions who suffer from a chronic condition, there are ways to cope.

coping with invisible illness

Defining What You Can’t See

Have you ever watched someone get out of a vehicle parked in an accessible spot and judged their eligibility to park there based on their appearance? Maybe they’re young, or perhaps they’re walking without a limp or assistive device like a wheelchair or walker. While they may have parked there without justification, it’s more likely they have an invisible disability.

This scenario is the example used by the Invisible Disabilities Association to illustrate the general lack of understanding of these conditions by the general public — probably because this illustration is easier than trying to define the phenomenon. “People often ask us to define invisible disability,” reads the association’s website. “In simple terms, an invisible disability is a physical, mental, or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgments.”

Most of these illnesses are also chronic, meaning they are long-lasting and continuous, and in many cases, become more severe over time.

Sometimes it’s even difficult for medical professionals to diagnose an invisible disease, which leads to even more frustration for patients. In many cases, symptoms are subjective, and “proof” of an affliction doesn’t show up in lab tests or x-rays. Luckily, though, the medical community is learning more about identifying and treating these invisible and chronic illnesses.

Proving That You’re Sick

Autoimmune disorders are among the most common chronic illnesses with invisible symptoms. These include fibromyalgia, chronic fatigue syndrome, lupus, rheumatoid arthritis, and Crohn’s disease. Fibromyalgia, for example, is a chronic condition characterized by fatigue, tenderness in some areas of the body, and constant pain in all areas. Clinicians can only diagnose fibromyalgia based on a patient’s description and rating of their pain. Patients may spend five years with the chronic pain of fibromyalgia before receiving a diagnosis.

Postural orthostatic tachycardia syndrome, or POTS, is another common invisible illness. POTS affects blood flow and the nervous system and can cause dizziness, fainting, and a rapidly increased heart rate. There is a wide range of risk factors for developing POTS, from which about 450,000 Americans suffer. Like fibromyalgia patients, people with POTS may have symptoms for years before receiving a POTS diagnosis.

Patients with chronic fatigue syndrome (CFS) are also familiar with the struggle for a diagnosis. CFS is also known as systemic exertion intolerance disease (SEID) or myalgic encephalomyelitis (ME). It causes headaches, joint pain, and extreme fatigue that worsens with activity but doesn’t lessen with rest. According to the Mayo Clinic, there are several theories for what causes CFS, from a viral infection to psychological stress. Like other invisible disabilities, clinicians or a rheumatologist will usually only diagnose CFS after ruling out all other more visible medical conditions.

“In terms of public awareness and acceptance, FM [fibromyalgia] seems to be farther along than CFS,” Deborah Barrett, Ph.D., MSW, tells Social Work Today. The article also shares that the Centers for Disease Control (CDC) states that CFS can be “as disabling as multiple sclerosis (MS), lupus, rheumatoid arthritis, and congestive heart failure,” but “acceptance has not disseminated throughout the entire medical community.”

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It’s All About Relationships

The Social Work Today article explains that sometimes “simply informing skeptics about a medical condition is enough explanation.” Unfortunately, that’s one of the biggest challenges for sufferers — gaining validation from others. Lisa Copen, who suffers from CFS and fibromyalgia, founded National Invisible Chronic Illness Awareness Week in 2002. Copen says she saw how people with invisible illnesses were “coping with the disease itself” — symptoms, progression, medications, etc. — but “when it came to how it impacted their lives — most specifically their relationships — they were struggling.”

Copen believes that a sufferer’s anguish is compounded by having to prove to others that their invisible symptoms, whether it’s fatigue, chronic pain, dizziness, migraines, joint pain, or brain fog, are real, painful, and debilitating. Copen and organizations like the Invisible Disability Association are working to create awareness about invisible illnesses and internal, unseen disabilities, so patients don’t always have to seek validation for or regularly explain their impairment to others.

There Is Hope

Personally, though, instead of trying to change the opinions of other people, Copen advises changing your circumstances if you suffer from CFS, fibromyalgia, or any other invisible, chronic disability. She offers five tips to improve your quality of life:

  • Let go of your expectations of others. Copen writes that while their misunderstanding of your CFS, cognitive dysfunctions, or Crohn’s disease symptoms may be frustrating, you also may not understand their difficulties. Their misunderstanding of what you’re going through is probably not intentional. It’s just not as significant to them as what they’re going through.
  • Find supportive friends. If certain relationships are more about disproving your illness than making you feel better, those are the ones that you need to let go, says Copen. You have enough on your plate trying to get through your daily activities and validate your illness to coworkers and clinicians — you don’t need that pressure from close friends.
  • Search for the joy in your blessings. Copen recommends changing your mindset from dwelling on your pain to focusing on your strengths. Assume you’re going to have a good day rather than a bad one, and explore small things that make you happy.
  • Use your talents and skills for things you care about. “Instead of focusing on what others are providing you with that you want so much,” writes Copen, “follow your dreams and give that gift to yourself.” For example, if you’re disabled and no longer able to work due to your impairment, consider volunteering locally or online in an area where you’re passionate.
  • Encourage someone else. If you’ve suffered from an invisible illness and struggled for validation from friends, family, or the medical community, you’re an expert, says Copen. Consider meeting with others through a support group or group psychotherapy to share what you’ve learned.

Therapy Can Help

Coping with an invisible illness or chronic disability can involve much more than medications and regular appointments with your rheumatologist. The mental and emotional repercussions can be equally debilitating.

Consider seeking counseling or therapy from a mental health professional for additional support. Through WithTherapy’s unique search platform, you can find the help to deal with your frustrations with clinicians, friends, family members, and strangers. With therapy, you can come to terms with your invisible illness and start having more good days than bad ones.

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