If you or someone you love is working to heal an invisible illness, it’s hard to understate the importance of validation and support from those closest to you. A supportive community (even if it’s just your doctor and close family) who listen and help you prioritize your health can be foundational to healing.

Unfortunately, people with invisible illnesses often feel isolated. invisible illnesses can be difficult to understand and explain, both for patients and for doctors. Particularly in conventional allopathic medicine, diagnosis and treatment are often elusive.

In part because people with invisible illness often look perfectly healthy, family, friends, colleagues and even doctors sometimes doubt the validity of an invisible illness patient’s complaints. Feeling alone can be one of the most difficult aspects of living with invisible illness.

Here is some basic information about what constitutes an invisible illness, why invisible illnesses can feel so isolating, and how to find a health care provider who can help.

What is invisible illness?

Invisible illnesses are defined as any disabling condition not readily apparent to the eye. Invisible illnesses are mostly chronic. They include (but aren’t limited to) some autoimmune disorders, diabetes, mental illnesses, chronic tick-borne illness, fibromyalgia and chronic fatigue syndrome. Some patients with an invisible illness have an easier time with diagnosis and treatment, while for others the road can be long and challenging.
Patients with an invisible illness may look healthy, but symptoms can be debilitating. Pain, fatigue, cognitive dysfunction and other symptoms of invisible illness can drastically impair daily functions. In some cases, working, going to school, taking care of family and other daily activities become close to impossible.

Unpredictable symptoms of invisible illness

Patients with certain invisible illnesses may have good days when they’re quite functional, only to be bedridden or severely impaired for a time after, often for no known reason. These cycles can be frustrating and even heartbreaking.

Patients often struggle with feeling they have no control over their symptoms, and are letting down those around them during flares. How do you plan ahead when you’re not sure how you’ll feel on a given day? How do you schedule work, school, or time with friends? Many people with invisible illnesses find themselves unable to keep commitments, and report friends and community falling away.

Doctors, friends and family don’t always believe people with invisible illness

Many patients report receiving the response “but you don’t look sick!” when trying to explain their conditions. (The hashtag #butyoudon’tlooksick is popular on Instagram). Friends and family sometimes doubt the validity of patient’s illness, as mysterious symptoms can come and go, and the person looks well enough.

As if this weren’t enough to handle, conventional allopathic doctors are also sometimes mystified by invisible illnesses. In particular, tick-borne illness, mold toxicity and other less common, chronic conditions can be missed by standard tests, if they’re tested for at all. In these cases, patients often report feeling condescended to by their doctors, who see nothing wrong in their tests, and feel their patients look perfectly healthy.

Women with invisible illnesses in particular report being prescribed anti-depressant medication, and enduring sexist suggestions from their doctors such as “perhaps you should just exercise more and eat less,” or “consider joining a book group.” These dismissals can feel crushing to someone fighting for a way back to health.

In addition, Black, Indigenous, and other people of color often don’t have access to the kind of excellent medical care required for treating invisible illness, and report doctors instead dismissing their experience.

Building a supportive community is healing

Supportive community is a pillar of health for all of us. When faced with the difficult path of healing chronic illness, feeling accepted by those close to you and supported in taking care of yourself is of even more importance. Held within supportive community, no matter how small, patients can relax and prioritize healing.

Finding the right doctor

Finding a committed and trustworthy health care provider can also be critical to healing from invisible illness. A good practitioner can even help you communicate with family and friends. When your doctor listens, believes you, and is willing to look deeply for root causes of your invisible illness, it can become easier to talk to friends and family about what you’re going through.

A diagnosis can also be extremely validating – an immense relief of stress. Even if a diagnosis is the beginning of a long road toward better health, it’s still grounding. It’s a place to start, and a way to frame your situation so others can get on board.

Health care providers well-versed in treating invisible illness are well worth the search. Often, practitioners with advanced training in areas such as leading European research, functional integrative medicine or naturopathic medicine are better equipped to understand and tackle these challenging conditions. At Dr. Grieder’s clinic, it’s our mission to be great listeners, and to look deeply for the root causes of invisible illness. We may also be able to refer you to a clinic in your area, if we aren’t close by.

In conclusion

Invisible illness can be stressful, isolating, and extremely lonely. It can be hard to explain invisible illness to friends and family, when “you don’t look sick”. It’s also sometimes a challenge to find a health care provider well trained to take on invisible illness. But both a good doctor and a supportive community can be foundational to your healing journey, or that of your loved one. It’s well worth building this network of support, and long-term health is worth the investment.