Understanding Invisible Illnesses: Three Women and Their Invisible Diseases

The term “invisible disease” is something I learned when I was diagnosed with Crohn’s disease in 2019. The word disease alone can be scary. It is typically associated with something you can physically see in others who suffer from an illness. Because of this, even after my diagnosis, I didn’t feel like I had a disease at all.

I looked healthy on the outside. No one would ever guess that I’m sick, see my struggles, or know just how much my illness took over my life. Through my journey, I learned about invisible diseases and found comfort in knowing that my illness and hardships were valid.

Many people are not aware of this term and what it entails, but it’s time to spread awareness. Invisible diseases are chronic illnesses with pain or fatigue that are not visibly seen by others. Illnesses that are considered as invisible diseases include Lupus, Rheumatoid Arthritis, Crohn’s Disease, Fibromyalgia, Colitis, Celiac, IBS, mental illnesses, allergies, Lyme Disease, Multiple Sclerosis, Sjogren Syndrome, Cancer, Chronic Fatigue Syndrome, and many more.

Having an invisible illness can be a very lonely and frustrating experience as those around you might not take how you feel internally seriously by how you look externally.

Hearing these stories of three women—each with their own afflictions—as they navigate through the trials of their illness will better help you understand the implications of invisible diseases and spread awareness on how it affects lives.

Selena: Lupus

I found Selena through her personal blog on Instagram (@myloopylife), where she documents her day-to-day life with Lupus. She showcases the joys in her life, but most importantly, doesn’t hold back on sharing her truth to her followers, and the difficult days she has living with Lupus. Selena is the perfect example of what an invisible disease is, on the outside, she is practically glowing with energy, but you would never guess she struggles with a serious illness.

Let’s discuss some quick background information. Lupus is an autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. The inflammation and flares can affect the heart, kidneys, blood cells, skin, joints, brain, and lungs. Currently, there is no cure for Lupus, but treatments are available to contain the symptoms.

When it comes to invisible illnesses, especially Lupus, your mental health can suffer a bit. I know my journey with Crohn’s has affected my mental health in ways others will probably never understand. She expresses, “I have also experienced periods of depression when I am reflecting on my life prior to being diagnosed, as well as the life that is ahead of me.”

I can definitely relate to Selena since most people with illnesses have their own internal battles when it comes to overthinking. This symptom occurs whether you feel like you’re taking the wrong step in taking care of yourself or if you’re doing the best you can with a disease that can feel out of your control. “I am always worrying about potentially flaring up, wondering if I am doing too much, worrying when I am going to feel better,” she voices.

With any illness, it is normal to experience depression. Yet, it’s difficult for others to understand, but when it’s not visible, empathy can feel weaker. When it comes to the support and relationships in the life of someone with an invisible disease, I was most interested in knowing Selena’s experience with others.

“In terms of my relationships, some have grown stronger and some have dissipated...my true friendships have stayed strong. Ever since being diagnosed, I socialize way less than I used to. This has caused distance in some friendships, but as mentioned, the true friends stick around even if I do not see them in person often,” she mentions.

Being diagnosed with a disease is the least desirable experience, but the outcome can strengthen your resilience and show you the true colors of those around you. Loneliness is one of the strongest feelings that arise when it comes to an invisible illness, it is something that I’ve felt as well and it can be disheartening.

When your illness is not visible, friends and family can forget or not understand that you still deal with symptoms every day and constant hospital visits; Selena shares her experience, Although I am not alone, I have experienced loneliness often throughout my journey.

“Before connecting with the Lupus community, I felt like no one truly understood what I was going through,” she concludes.

Marielle: Crohn’s Disease

As a person who also has Crohn’s Disease, I connected with Marielle Pflaster who also suffers from the irritating disease, and was eager to learn from our shared experiences. In Pflaster’s own words, she describes her illness, “I’m constantly uncomfortable, bloated, and feel puffy. Many foods can offset my stomach and make me look pregnant because my stomach distends uncontrollably. The pain is awful when you get a flare-up and could affect your entire day. Some days you have no energy and some days you feel sad. Some days your hair falls out a lot.”

Marielle’s description accurately illustrates the typical symptoms of Crohn’s patient’s experience but also lets others know about how patients suffer internally but wouldn’t be able to tell from the outside. Receiving support with an invisible disease can be tricky and inconsistent with those around you.

The hard part of having a disease like this is not only the disease itself but the attachment of “she doesn’t look sick.” Pflaster mentions this, “I definitely have felt that way because people would always say she doesn’t look sick. But just because I don’t look sick doesn’t mean I am not sick inside.”

Having an invisible sickness can make patients feel like they need to prove that they’re sick or set a reminder, which sounds ridiculous if it wasn’t difficult already. “Many patients with invisible illnesses look healthy on the outside, leaving them to deal with friends, family members, and even medical practitioners who question whether they are truly sick,” she mentions.

A similarity that Pflaster and I share may seem simple but demonstrates what life is like with Crohn’s. Rest is your friend and your bed is your home on some days. Times like this may sound desirable but for a patient, it can feel like they’re the only person facing this, and Pflaster expresses this when I asked about feeling alone.

“When I’m not feeling my best and crawl into my bed for the day.” Pflaster finishes off and simply mentions what she wants people to understand about Crohn’s, “Everything !!! Doesn’t matter how you look on the outside, it is all about the inside.”

Anette: Rheumatoid Arthritis

For someone who's young and thriving like Anette Barrios, Arthritis seems like it doesn’t fit the picture, as we mostly think about Arthritis being connected to the elderly. Like any illness, Arthritis affects others differently as those who are diagnosed have their unique stories.

I asked Anette how she explains her Arthritis people around her, she says “I have Arthritis in my hips, knees, and wrists. As a young person, most of the people around me laugh or refuse to believe me when I tell them I have it and have had it since I was seven. I’d say my Arthritis involves joint pain that flares when it senses some kind of imbalance either within or outside my body. This could mean becoming more severe when I’ve done a lot of exercises, or the pressure changes, maybe even during menstruation.”

As a person who has danced my whole life, being diagnosed with Crohn’s has made dance physically difficult later on in my dance career. In this way, I relate to Barrios as she is a theatre student at the University of Oklahoma and studied at an arts high school prior to that; this is her experience, “There is definitely frustration that comes with this. A career or even training program in performance is hard on healthy joints, so having joint pain layered on top means I spend some classes fighting back tears to get my hips to open up…the loneliness comes a bit more from dealing with this since I was so young. Though it’s something I’m open about, I try not to make it anyone else’s problem.”

When I asked Barrios about inconsistent support, she explains her thoughts, as I found it to be relatable for our young age “Most people get caught up on the age thing— ”if you’re young, you must be healthy“ —and I’m not unhealthy, but my body doesn’t do this one thing quite like it should, so I have to deal with it as it comes.”

I absolutely love this answer and glad it is was mentioned because this misconception is something I struggle with as well. It is true that I am not completely unhealthy but I do have a life now where I deal with discomfort and constant tests and doctors visits.

It was very important to me to ask Barrios what she wants others to understand about Arthritis in her own words; “I wish people knew that there are actually lots of children with it. Juvenile Arthritis is a very real thing. Mine was initially discovered when I ended up in the hospital with a pretty severe transient synovitis. After, they sent me to a rheumatologist and saw that I also had Arthritis in my hip. This isn’t wildly uncommon.”

Having an invisible illness makes it hard for others to know how to support you, but just like anything difficult in life “support is believing someone with an illness and trusting that they know what they need,” she closes off.

It is time to bring awareness to those who suffer from invisible diseases. All three women, myself included, have found ways to stay strong despite our diseases, but it is not always easy. It is imperative to start supporting individuals who suffer from invisible illnesses.

You can find ways to help out on this website.