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:
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.
International Foundation for AiArthritis
6605 Nottingham Ave.
St. Louis, MO 63109-2661
Tax ID: 27-1214308
Copyright 2024. All rights reserved. Information on this site is intended for informational purposes only Our foundation does not engage in the practice of medicine. Please consult a physician to obtain personal healthcare and treatment options. 501(c) 3 Nonprofit Tax ID: 27-1214308.