The Things You Cannot See

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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • karenb54
    6 mins ago

    Wow, great article because it’s so true. I hide my symptoms all the time from my employers. I love and need my job and do not want to lose it. On those days when I’m having trouble walking, moving my fingers or in a fog, that’s when they want me to do the most walking!! Murphy’s law I know. I am so sick of hearing my doctors say, but you look so good. I want to scream, I have to look so good to keep my job!

  • Lawrence 'rick' Phillips
    3 days ago

    People cannot see how difficult it is to get out of bed some days, or the difficulty with driving, walking or how much I look forward too and hate Methotrexate. No one, except Sheryl, sees that.

  • Tamara Haag moderator author
    1 day ago

    Yes! The difficulty of getting out of bed and driving, walking (heck, sometimes just holding an electric toothbrush in my mouth), are all so real. I love your phrasing of “how much I look forward to and hate Methotrexate.” That captures our love/hate relationship with the medicines the simultaneously help us and hurt us so well. Thanks so much for sharing!

  • LisaBailey
    6 days ago

    After all these years, I find out I am not crazy. I didnt know RA causes headaches. This article explained a lot. Thank you!

  • Richard Faust moderator
    3 days ago

    Sorry you have these headache issues LisaBailey. RA and/or the treatments can absolutely be a cause. This article from one of our contributors takes a closer look: https://rheumatoidarthritis.net/living/ra-can-be-a-real-headache-literally/. You will note the number of potential factors/causes he mentions – your doctor should be able to help figure out what may be contributing to your headaches and, hopefully, have some treatment options. Best, Richard (RheumatoidArthritis.net Team)

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