Invisible Diseases

Hello everyone! My name is Becky Hosey, and I’m a volunteer for AiArthritis. As a medical

professional and person living with chronic illness (Sjögren’s Disease & endometriosis), I have a

unique perspective on healthcare.

Today’s blog is all about the concept of invisible disease, and is probably going to resonate with

many of you! So, what does the term invisible disease actually mean? Hidden illnesses are

exactly what they sound like, conditions that aren’t visually seen. Due to a perceived lack of

sickness, individuals are often scrutinized, and dismissed. Sadly, this phenomenon commonly

occurs in the general public, and medical community.

While invisible diseases make up a very broad category of conditions, autoimmune and

autoinflammatory (Ai diseases) are frequently unseen. As many of you can appreciate, exterior

impressions are often far from reflecting the actual health struggles of those with Ai diseases.

Not being validated can lead to serious distress and isolation, resulting in unnecessary suffering.

Being sick is certainly challenging in itself, never mind experiencing ridicule from those around

you, including your trusted medical providers. If you read my previous blog, then you know I

experienced this firsthand as a patient, being told on numerous occasions that I didn’t look sick,

even though I was having trouble with simple activities like walking because of my illness.

Many symptoms associated with Ai diseases aren’t easily seen, or acknowledged by others

because they are considered subjective, being exclusive to the individual’s experience. When I

struggled to get diagnosed with Sjögren’s in 2015, I had a laundry list of issues, but the most

debilitating of these were: fatigue, muscle weakness, and joint pain. These caused me to present

over, and over to the doctor, and I was quickly labeled a chronic complainer.

Although medical professionals undergo extensive training on a diverse array of illnesses, there

is particular ignorance towards hidden diseases. For instance, if you develop a rash after

exposure to poison ivy, this is a pretty recognizable affliction. The problem is obvious, along

with the necessary treatment. But if you have vague issues, then it’s easier to be dismissed.

Tragically, invisible conditions often take years, or even decades to diagnose. This delay in

treatment can result in irreversible damage, decreased quality of life, and even premature death.

We as a society must never discount another’s experience, as we never know what someone is

going through.

Now that we got all that out of the way, let’s change gears, and focus on the fact that you can live

a happy, productive life with invisible disease! For me, I can honestly say that while my life has

certainly turned out much different than I planned; my invisible conditions have allowed me to

help others on a much greater level. It led to a deep understanding that I would have never had if

I didn’t get sick.

Here are some tips if you or someone you love are on a journey with invisible disease:

• Knowledge is power! Research as much as you can on your condition, or
• symptoms.
• Surround yourself with supportive individuals.
• You’re not alone! Connect with others on a similar path.
• The journey of invisible disease can be grueling. Be patient with yourself.
• Listen to the messages of your body. Trust your intuitive thoughts & feelings.
• Stand strong & educate others about your struggles. Become an Invisible Disease
• Warrior!
• Never settle for substandard medical care!
• Stay positive & remain open to change. A metamorphosis will eventually reveal a
• beautiful butterfly & it can for you too!

Thank you for reading!

Be well,

Becky

If you want to learn more about me please visit: www.rebeccahosey.com

Disclaimer: This blog will not provide diagnosing, or specific medical advice. As with any

medical intervention, you should always speak to your healthcare provider prior to initiating.