The Things You Cannot See

Diseases such as rheumatoid arthritis/rheumatoid disease (RA/RD) are called “invisible disabilities” because most people who have them do not have highly visible signs of the disease. Some people with advanced RA/RD symptoms may use wheelchairs or canes or may have joint deformities that are pronounced enough for others to see.

However, the majority of people with RA/RD have symptoms that are only noticeable to doctors or when specifically pointed out to friends or relatives.

The invisibility of the illness

On one hand, invisible disabilities afford those who have them the choice of whether to disclose that they have a disease. However, because most people with RA/RD do not have symptoms that are readily apparent to others, this can also lead others to doubt or discount the severity of the challenges people with RA/RD are contending with.

What cannot be seen

Here are a few of the aspects of living with RA/RD that most people cannot see:

  • You cannot see the intense pain tearing through my body during a flare that renders me unable to leave the house.
  • You cannot see the disappointment I’m feeling when I have to cancel our plans . . . again.
  • You cannot see the deep, heavy fatigue I am feeling that makes each movement, each step, each waking moment difficult.
  • You cannot see the lidocaine patches that are numbing my pain enough to enable me to be at work today.
  • You cannot see the hours I spend in an infusion center receiving monthly IV treatment.
  • You cannot see the effort and exercises required to start a day when experiencing intense morning stiffness.
  • You cannot see the achiness involved in moving my body every single day of my life, even on the good days.
  • You cannot see how hard it is to fall asleep most nights, or how often I wake up due to the pain I’m in.
  • You cannot see the brain fog that makes me feel stupid on top of being in pain as I try to find a word, remember what I was saying, or the task that I was just about to do.
  • You cannot see the damage this disease is causing inside my body that shows on the x-ray and ultrasound images kept in files in my doctor’s office.
  • You cannot see the puncture locations all over my body from countless blood draws, injections, and infusions.
  • You cannot see the worry I have during job changes or insurance plan shifts when I’m trying to make sure I can afford the medication that keeps me functioning well enough for you to not see my symptoms.
  • You cannot see my fear that one day this disease will progress to the point where my deformity or lack of mobility will be so pronounced that this disease will no longer be invisible.

What aspects of living with this disease go unnoticed to those in your life? What challenges do you experience that you wish others could understand?

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