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September Topic 2 – Rheumatoid Arthritis Awareness – What is Chronic/ Invisible Illness? (Re-Post With Updates)

What is chronic illness? What is an invisible illness?

Often times our family, our friends, our coworkers, acquaintances, and even our partners do not understand what chronic illness is, much less what an invisible illness is.

Not understanding one’s condition(s) or diagnosis occurs so often that it leads to the isolation of the ill individual, it leads to friends and family pulling away, it breaks up marriages, partnerships and leaves one feeling lonely and depressed.

A chronic illness, by definition, is an illness that persists for more than 3 months. Examples of chronic diseases are arthritis’, diabetes, cardiovascular issues, cancers, and even obesity.

Arthritis, diabetes, mental issues, chronic fatigue syndrome, fibromyalgia, epilepsy, ADD, just to name a few” invisible illnesses.”

There is a saying all over the internet that goes something like,” you don’t look like you’re sick”! And then the ill person responds,” you don’t look like you’re stupid either, but here we are”! Another favorite of mine is a patient being diagnosed with rheumatoid arthritis where the doctor says,” the good news is you don’t have cancer, the bad news is, you’ll be on chemotherapy for the rest of your life.”

Rheumatoid arthritis is not like any other arthritis.

RA, for short, is an autoimmune disorder in which the body’s own immune system attacks itself. It destroys the joints explicitly and can move on to beat the main organs. It can affect the lungs, kidneys, gut, liver, heart, etc.

It causes high inflammation in the body, extreme pain, fatigue, weakness; it is a systemic illness (meaning it affects your entire system). Once there is damage caused by RA, it is irreversible. Roughly 1.5 million people in the United States are diagnosed and suffer from rheumatoid arthritis. The cause of Rheumatoid Arthritis is not fully understood. Everyone responds differently to treatment. At this time, there is currently no cure.

Researchers have found genetic markers linked to RA, such as STAT4, HLA, TRAF1, C5, PTPN22, and most recently, I read an article linking the JAK2 and JAK3 genes (however, this has not been updated on any of the main arthritis sites).

 

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The Bigger Picture (Facts)

 

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There are Treatment Options; however, they do not always work. Treatments may also stop working.

My advice if you are living with any illness:

Be patient with yourself. If loved ones walk out of your life, it’s because they don’t belong there, and it’s a reflection of them, not you. Learn to live” the new normal,” things are going to change. Love yourself; you did not choose your illness. You are going to have good days, I promise; reset your mind to be positive and begin sharing your experiences; it makes a world of difference. Know you are not alone. Be your own advocate, DO NOT let doctors determine your treatment plan without your input.

My advice to those who know someone living with a chronic illness:

Their life has changed; they didn’t ask for this. Be patient with them. Learn about their illness and how it affects them. Be empathetic. Learn what to say and what not to say. DO NOT say,” I hope you get better soon.” Generally speaking, chronic illnesses are not going away, and that line really pisses us off. Continue to invite them to events, they may just say yes on a good day. Check on them; they will likely say they are” okay,” learn the signs of when they are not. Just simply be there.

To learn more about rheumatoid arthritis, you can check out the following:

www.arthritis.org

www.rheumatology.org

https://www.webmd.com/rheumatoid-arthritis/rheumatoid-arthritis-basics

 

If you would like to share your RA story or any invisible illness story, please contact us at colorfulchaosthejourney.com to be featured on this blog.

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