Invisible Illness: How to Advocate for Yourself and Find Support
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Health Concerns

Destigmatizing Invisible Illness—And Advocating for Your Wellbeing

February 25, 2021

Living with a chronic illness is tough. Symptoms may be debilitating, impacting every aspect of your life, from work to relationships. Symptoms may also be unpredictable—will this be the day you feel well or will it be a day stuck in bed?

On top of the physical markers, when living with an invisible illness you can also experience added stress and profound loneliness. “It’s really isolating,” says Erin, a Parsley Health member who has an autoimmune disease. “Not a lot of people understand.”

When others can’t see your symptoms, they can easily misjudge what you’re going through and even dismiss your experience—making it feel like they’re dismissing you as a person. Without visible signs of sickness, people assume you’re perfectly healthy and can’t possibly be sick.

Consequently, this can lead individuals to feel isolated, question their own symptoms, and berate themselves for not feeling better. Worse, they can assume they’re inherently flawed and suffer in silence, letting shame stop them from getting help or reaching out for support.

What is an invisible illness?

An invisible illness is any physical, mental, or neurological condition that doesn’t have external signs but limits or challenges a person’s movements, senses, or activities, according to the Invisible Disabilities Association.

Invisible illnesses include a wide spectrum of conditions, such as:

  • anxiety disorders, depression, bipolar disorder, and PTSD
  • autoimmune disorders, such as endometriosis, lupus, and rheumatoid arthritis
  • chronic pain disorders, such as fibromyalgia
  • diabetes
  • digestive disorders, such as celiac disease and Crohn’s disease
  • migraines
  • thyroid disease

The challenges of living with an invisible illness

Given the societal stigma toward invisible illness, at work, Erin regularly feels like she either has to be ‘on’ or over-explain her situation—“why despite looking ‘healthy’ on the outside, I don’t feel OK on the inside and need to take a break or sick day.”

“With only 10 days allotted annually for sick days, every day I have to ask myself whether or not this fatigue, migraine, pain, anxiety, etc. is bad enough that I need to use one of those precious days, or can I muster through enough to get through the day?” she says.

Having a personal life has been hard, too. Erin’s symptoms first started at 19, an age when most people are more focused on carefree fun and late nights and less aware of their well-being. Now 25, Erin has made various dietary adjustments recommended by her Parsley provider, doesn’t drink alcohol, and goes to bed at 8 p.m., which makes it challenging to go out with friends and further cultivate those connections.

Parsley’s recommendations have 150 percent helped me,” says Erin. “I try to do everything in my power to be non-negotiable about their recommendations since they’ve helped so much.”

According to Erin, “The Spoon Theory” is a helpful way to better understand what people with invisible illness (and chronic illness) experience. Spoons represent finite amounts of energy. And on many days, many people have just one available spoon.

“I always have this impending fear that something bad is going to happen every day, especially to myself,” says Emily, a Parsley Health member who struggles with panic attacks, gut issues, sleep, and headaches.  

At work, Emily worries about showing all sides of herself. “I’m a very outgoing person. A lot of people who know me see nothing wrong, and honestly that actually adds to my anxiety because I get scared to be my authentic self. You start to think that anxiety is wrong, and you’re wrong, and the way you do things is wrong,” says Emily.

Advocating for yourself when you have an invisible illness

Both Erin and Emily saw doctors in the past who completely wrote them off. When Emily told her doctor—someone she’d trusted for years—that she didn’t feel right, he said she’s young and would feel better after losing weight.

“Never accept dismissal as a reflection of what you deserve,” says Shaina Painter, a functional medicine nutritionist and health coach at Parsley Health who works with patients with invisible illness and chronic illness. While advocating for yourself in the health care system may feel more difficult when your illness isn’t visible, it’s essential for getting the care that can help you manage or reverse your condition.

How you can advocate for yourself

Shop around for the right care team.

Just like any service provider, you can hire (and fire) your doctor, says Painter. She suggests reading providers’ reviews, asking around, and viewing your first encounter as an interview.  Make a list of questions and traits you’re looking for, and if someone doesn’t meet those parameters, find a practitioner who does, she says.  

In fact, many members at Parsley Health saw primary care providers and specialists before coming to Parsley and found that Parsley’s whole-body, holistic approach and the support of both a provider and health coach offers the help they need to feel seen and heard for the first time.

Speak up.

As uncomfortable or unfamiliar as it might feel, be direct with your providers about the invisible illness you are experiencing and struggling with. Remember that no one knows what it’s like to be in your body more than you, says Erin. A good provider will also give you the opportunity to open up and discuss your health history, lifestyle, and goals in-depth. You might be surprised at the level of detailed questions Parsley providers ask, for instance.

Ask questions.

Remember, this is your body and your life. Before going to an appointment, reflect on what’s important for you to know and which questions you want to be answered by your doctor. For example, when a provider writes you a prescription, Erin suggests you ask: “Why should I take this? What will it do for me?” Also, ask about side effects and any other common and not-so-common reactions to expect. 

“Your healthcare should be collaborative. It’s not a one-way street,” says Painter. “When I’m working with members I make sure they’re involved in the decision-making process about what their health plan will look like, so having an open dialog is imperative.”

Grow your support circle.

Recently, Emily has begun sharing her story with friends and coworkers, helping her to “feel so much stronger in my day-to-day life.” She and friends that also struggle with anxiety have monthly sessions to support each other and share helpful tools.

Also, check out online communities. For example, Painter suggests visiting the Invisible Disabilities Association. If you have a diagnosis, look into organizations for that condition, such as:

Practice self-compassion.

“Learning you have a chronic illness, or riding the unpredictable rollercoaster of symptoms can really take a toll,” says Painter. “Reach for tools that feel really good in your body, and continue to listen to the body with a non-judgmental wide ear,” she says.

And these tools can be seemingly small. “Breathing has pretty much saved my life,” says Emily, who was previously skeptical about meditating. Today, she meditates for 10 to 15 minutes using the Happy Not Perfect app. Having helpful tools has also shown Emily that there’s real hope and she can heal.

Name your needs.

Consider what you’re currently struggling with and the specific ways others can help. You might even create a list of chores and other supportive tasks, so when people ask, you’re ready.

Find familiar stories.

While living with an invisible illness can feel lonely, you’re absolutely not alone. Remind yourself that others have similar experiences. For example, check out Uninvisible, a podcast about how people cope with different invisible illnesses.

How to support someone who has an invisible illness

Whether you have a friend or family member dealing with invisible illness or you yourself are searching for ways others can support you, small, simple gestures go a long way.

Go beyond looks.

Our eyes are our fastest tool for evaluating the environment. So it makes sense that if someone looks “healthy,” you assume they are. But remind yourself regularly that in reality, we have no idea what anyone is going through—unless we ask.

Be ready to really listen.

To help someone with an invisible illness feel seen, listen with openness and without judgment. According to Erin and Emily, you might start with these statements:

  • “I know I won’t truly get it, but I do want to hold space for you and your experiences. If you’re willing to share, I want to hear your experience.”
  • “I want to know what It feels like to be you. Can you help me understand?”
  • “I am here.”

Don’t stop checking in.

When Erin first started having symptoms six years ago, everyone in her life reached out. “By the time I was 21, it was basically just my mom and dad asking if I was OK.”

“You can never reach out and say ‘just wanted to check in on you today; how are you feeling?’ enough,” says Erin. A quick text can help someone feel significantly supported.

Walk alongside.

Join the person in activities that are part of their overall wellness plan. For example, Erin’s husband skips alcohol, eats similar meals, and checks out resources on chronic illness. What activities can you participate in? This could be anything from joining your friend on a weekly walk to trying out new recipes together to reading an article on their invisible illness.

Help with tough tasks.

Because invisible illnesses can significantly limit a person’s time and energy, offer to take on a chore or two. You might clean, cook, or grocery shop, recommends Painter.

The takeaway

Living with an invisible illness is challenging—especially if you don’t feel listened to by your doctors or supported by friends and family, but there are steps you can take to advocate for your health and wellbeing and ways to educate loved ones on how to support you. If you’re looking for a partner on your healing journey, Parsley Health providers and health coaches are here and listening.

Parsley Health is the only medical practice that leverages personalized testing with whole body treatments.

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