Skip to Accessibility Tools Skip to Content Skip to Footer
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

  • SNIS 44
    8 months ago

    so well said brilliant xx

  • Tamara Haag moderator author
    8 months ago

    Thanks for your comment and for being in our online community! All the best, Tamara

  • tckrd
    8 months ago

    Wouldn’t it be better if you told your employer about your disability. By law they are not allowed to discriminate. Then when you are having bad days they would be required to make reasonable accommodations so you can perform your job.

  • Tamara Haag moderator author
    8 months ago

    Hi tckrd,

    Thanks for your comment! Disclosing one’s disability to supervisors and/or colleagues is a very difficult determination. Yes, by law employers cannot discriminate. However, what that means is that if discrimination does occur there is legal recourse that can take place, which can be a difficult and sometimes expensive process (if legal fees are involved, one’s job is terminated, etc.). It can also be difficult to prove that discrimination did take place. For example, if one is given less desirable assignments, passed over for promotions, etc. it is very hard to prove that this is due to an employer’s bias about a chronic health impairment, versus any number of other factors they might claim (and their claims may not always be true). Some people in this online community have shared horror stories about their experiences with difficult and uncompassionate employers.

    Personally, I have only had one really negative experience and outright discriminatory experience at work. I ended up having to work through the ladder of HR, and once I made my threat of an ADA compliance violation directly to the head of HR, she nipped the situation with my supervisor in the bud. However, I had a tense relationship with my supervisor after that occurred. A few months later when I got my annual performance evaluation it was by far the worst evaluation I have ever received in all my years as a professional. If you looked at all my other evaluations and at that one, you would think they were for different employees. I cannot help but think that my supervisor held a grudge against me after getting his hand slapped by HR. It was really unpleasant working for him after I made my ADA complaint.

    In contrast, most of my employers have been understanding. I do disclose that I have a disability, but I wait until they have seen my work performance before sharing this information so that they will know I am a hard worker before they learn that I have a chronic health impairment so that it won’t bias them against me.

    There are many factors people have to navigate in making these determinations, and every person’s situation is different. In a perfect world, we would all be able to be honest about our challenges. I wish we were there!

    Thanks so much for being part of our community and reaching out with your comment!

    All the best,
    Tamara

  • CynthiaV
    8 months ago

    Once again a homerun of an article Tamara. It can be so lonely and demoralizing to suffer with an invisible illness. Even close friends and family can be skeptical and even discount our daily sufferings.

    The truth about your comment on puncture wounds hit me the hardest. It is something I have never considered but is so true. The number of infusions, blood draws and steroid shots I have endured is too numerous to count. Thank you for spotlighting this. It made me feel less alone knowing unfortunately, that others share in it.

    But there are three saving graces I lean on in times of greatest trouble, my compassionate and excellent rheumatologist, my loving, supportive husband and my constant, faithful God. Without each I fear I would be a sad, bitter person.

    Thank you again for so eloquently voicing these hardships.

  • Tamara Haag moderator author
    8 months ago

    Hi CynthiaV,

    Thank you so very much for your kind words! It is so challenging to live with this disease, but it makes me so happy to know that anything I’ve written has helped another person with similar challenges feel less alone. Thank you.

    Yes, the challenges we face are so multi-faceted and nuanced, and people who aren’t experiencing them can never fully understand what it’s like. Thank you for sharing your perspective, as well as your saving graces. They are so valuable.

    All the best,
    Tamara

  • Sampia
    8 months ago

    People do not see how my medicine makes me feel ill, tired, weak, but that I still must take it so I can function

  • Tamara Haag moderator author
    8 months ago

    Hi Sampia – Yes, that is so true! Thanks for sharing that. Gentle hugs, Tamara

  • karenb54
    8 months 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!

  • Tamara Haag moderator author
    8 months ago

    Hi karenb54,

    Thanks for sharing! Yes, I know what you mean about that Murphy’s Law. And I too hate hearing that I look good from my doctors (not quite as much as I hate hearing that my labs look good – because I have seronegative RA and my labs always “look good” – but it ranks pretty high up there). As you talk about trying to look extra good on the outside to cover up the challenges you’re facing on the inside, I thought you might appreciate this article, “Faking It”: https://rheumatoidarthritis.net/living/faking-it/.

    Thank you for sharing and for being in our community.

    Wishing you all the best,
    Tamara

  • Tamara Haag moderator author
    8 months ago

    Hi NPEOttawa,

    I know that frustration so well! In case it is helpful, I share my experience in having the Vectra test performed, which was the first time that my RA disease activity showed up on labwork: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/

    I wish you all the best. It can be very difficult to find a good rheumatologist, as there is a shortage of them, but if you are in an area where there is more than one option, you may want to consider getting a second opinion. Determining a treatment plan with a doctor one can trust is hard enough, trying to do that with a doctor who seems to be discounting one’s symptoms is a trial in itself. I have had both experiences, and I’m so grateful that my current rheumatologist puts more stock in my self-report, his physical exams, and the ultrasound images than he does in standard labwork.

    Wishing you all the best,
    Tamara

  • NPEOttawa
    8 months ago

    Yes, almost another way to be invisible – negative labs. And for me, nothing very definitive on X-ray or MRI. How can I be surprised if my dr wonders about the diagnosis, when I do myself sometimes? In spite of the fact that my symptoms are all very indicative. I’m about to go see him and tell him that MTX still seems to work minimally, if at all, and that 6 months of the newest addition to that makes no difference either. Will this be the time he tells me, “Sorry, you’re on your own; this can’t be RA.” ? Instead of being grateful that my x-rays and MRI show little, which may mean a better prognosis, I find myself perversely wishing for one result that says, “This is RA.” so both he and I and anyone I tell this to, can quash that seed of doubt.

  • Lawrence 'rick' Phillips moderator
    8 months 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
    8 months 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
    8 months 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
    8 months 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)

  • Poll