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The Pain of Invisibility

The Pain of Invisibility

Most of you have probably heard the term “invisible illness” used to describe rheumatoid arthritis. This “invisibility” refers to the fact that people with RA can often be dealing with various serious symptoms – such as debilitating pain or crushing fatigue – but show no outward signs of being sick or even being in pain. Although these symptoms may not be obvious to the average observer, a person with an invisible illness may experience severe limits on their daily activities or an overall toll on their quality of life.

Living with an invisible illness

Unfortunately, many people make judgments about the capabilities of others based on the way they look. They may see someone who looks healthy park in a handicap spot and immediately assume that their handicap placard is being used illegally, when in reality that person may legitimately be in a lot of pain during their brief walk across the parking lot. Co-workers may not understand why someone who “looks fine” needs to take so many sick days or go to so many doctors appointments. Friends and family may be frustrated that someone with an invisible illness isn’t available for social activities anymore or that they aren’t feeling better yet.

Reflecting on the invisible symptoms of RA

I’ve been thinking quite a lot lately about the “invisible” aspect of life with RA. Considering that we generally “look fine” on the outside, it can be extremely difficult to explain to others what we are really dealing with on the inside. How do you make someone realize how much pain you are in when there are no visual signs of your pain? Is it possible to help someone understand your severe fatigue even if you are able to keep going through your day? Trying to explain what you are going through to someone who does not truly understand life with an invisible illness can feel like a daunting task. And, at least in my experience, my efforts are often unsuccessful. This invisibility and lack of understanding can make people with RA feel very isolated.

Proof with visible RA symptoms

This is why I recently found myself feeling strangely grateful when I looked down at my excruciating hands the other day and saw that my fingers were visibly swollen. It’s also why I didn’t mind last week when pain in my toes and ankle forced me to limp when I walked. I felt like I finally had some “proof” that I could show to people who I knew were judging me by my appearance. Like maybe it would help some of them finally understand what I deal with every day.

Coping with the invisible aspects of RA

Please don’t get me wrong – I would never, ever wish for a physical deformity. I am extremely grateful to have access to medications that prevent me from becoming obviously disfigured. And I in no way mean any disrespect to people who live every day with physical disabilities.

All I am trying to do is recognize that sometimes the invisible aspect of life with RA can be particularly difficult to cope with. Have any of you ever felt the same way?

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

  • yahara2254
    3 years ago

    Having an invisible disease like Rheumatoid arthritis,we tend to be ridiculed many people are looking at the outside rather than to learn about the disease itself, I too have been judge, I can be at a store and run into one of my former co-workers, and they will say, how good I looked,that I don’t look sick at, I tell them that Rheumatoid arthritis is not like having a cold or the flu, this is being sick. I tell them that what I have is inside, invisible to the naked eye. What they don’t see is the pain,and the inflammation,and the problem with walking. People looks what’s on the outside, they don’t see when we are riddle in pain from having a bad flare. When we park in a handicap parking yes we do get stares, they make us feel guilty, but not knowing why we need to park in the handicap parking. It’s sad how many people with an invisible disease to be judge. Hoping one day we won’t be criticized, or say we are faking our pain. To All who have this invisible disease,Rheumatoid arthritis, always walk with head up high.

  • Mariah Z. Leach moderator author
    3 years ago

    Hi Yahara2254:

    Thank you for sharing your story and for your attempts to help educate people about the reality of rheumatoid arthritis. It’s very inspirational and I hope that more of us will be able to follow your lead!

    ~Mariah~ (Site Moderator)

  • agsides
    3 years ago

    Exactly, I’m 35 with arthritis and fibromyalgia and no one really sees me as unable to do certain things. I’ve been debating growing my hair out to let the grey show so that people will think I’m older, I’ve had grey hair since high school and normally die it. I wear my compression gloves on bad days and people ask me if I’m cold. I feel like all I do is complain to friends and family lately since pain seems to dominate my life but most of it’s invisible to people who don’t know my situation.

  • Sharon Fritz
    4 years ago

    I put my answer in the wrong place.

  • Susan Slater
    4 years ago

    I am sitting in my car, in the oral surgeon’s parking lot, feeling the total fool because I broke down, in his office, in the exam chair, and cried. Cried, as in choking back tears while the doctor had his hand in my mouth as he reset the cap that fell out of my implant. Cried, not from the pain of the procedure, but from the pain of being alone! So alone that I have no one to call, no one to talk to because, when I do call to talk, they don’t understand. The deepest pain is because of the rift between my own siblings and me. My father died four years ago, and left his legacy in the form of a living trust. Included in his trust is a special needs trust for me, established so that I could remain on Social Security disability, and still have access to the funds my father left me. My father named my brother and sister the trustees of my special needs trust. I trusted them to manage my trust wisely, and with my needs and wants foremost in their decision-making. I thought that my family, surely, would not go the way of other families who have been torn apart by greed and power. Sadly, I was wrong! I am now in a legal battle with my siblings because they have tried to limit my access to the funds my father left me. In addition to RA, I have a heart condition that resulted in my needing an implanted pacemaker-another invisible condition. I met the news, of my siblings’ legal attempts to manipulate my trust fund, with shock and disbelief; we have never been close-knit, but I felt completely betrayed by my own flesh and blood! (I should add that, along with my children, my siblings are beneficiaries of my trust upon my death.) To comply with disability law, the ARC organization of my state was contracted to manage the funds in my trust. The people at ARC have been my support system since my trust was established, and they reacted with abject horror when they learned of my siblings’ actions. They even, very generously, offered to pay an attorney to represent me! The shock I felt has now turned to anger and indignation. If I did not have RA and a pacemaker, my father would never have had to place my funds in a special needs trust; I would have received my portion outright, just as my siblings! I am not angry at my heart condition or my RA. I am angry that I am being treated so horribly by people who are supposed to care about me and love me! I have only spoken, by phone, to the attorney who is representing me. He specializes in cases dealing with trusts and disability law, and does seem to have my interests as the focus of his work. But, even with his knowledge and expertise, he does talk “down” to me, explaining things very slowly as if my RA was a mental or intellectual disability. Until I was no longer able to work, I had been a special education teacher and music therapist; I am a huge advocate for special needs populations. I am just really tired of being treated like a second class citizen because I have trouble opening pickle jars, and have to use a cane on my bad days! I have screamed at my best friend, yelled at my supporters at ARC, and, now, broken down in my oral surgeon’s office! And none of them understands, not even my bestie who has diabetes; she doesn’t park in a handicap spot and get dirty looks, or use a grocery cart as a crutch in the grocery store! I really would like to find an advocate who would help me champion my cause, help me speak for those of us with this invisible disease who are wronged, discriminated against, and misunderstood! All of this emotional upheaval I’m experiencing has really affected my RA. I’m sure you all know, first hand, what our minds can do to our bodies! It helps so much to be able to put my feelings on paper, and know that Im not alone here! Not alone in the physical pain, or the emotional turmoil that sometimes comes with it! I would like to know where I can find advocacy, whether thru a disability or arthritis organization. It does help to share our stories with each other. I would like to also share with people who believe as we do, that we are not disabled, but differently-abled! I so appreciate those of you who trudged through this, you’re all amazing!

  • Sharon Fritz
    4 years ago

    I know how you and many others feel. I also have Fibro for over 25 years and I really don’t which one is acting up. They are so alike. Nobody else can know how you feel or how much pain you are in. I don’t know if it fibro or RA. I am very confused.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Susan~
    I am so sorry that you had to go through that experience at your doctor’s office – I think all of us have experienced a breaking point like that at one point or another. I hope it helped, at least somewhat, to put your feelings into words! Perhaps you might like to consider sharing your story in our “Share Your Story” section? http://rheumatoidarthritis.net/stories/ I’m sure it would help others feel less alone. Please hang in there and remember that we are here to support you.
    ~Mariah~

  • Beci
    4 years ago

    Hi, I loved reading your story as that’s exactly how I feel. I’ve had time of work with chronic flare ups & dread going back to work as I know people don’t think its worthy me being off. I’ve limped/walked on the side of my left foot & have wanted to scream every time I’ve put my foot on the floor for the last 8 months. I’ve got bursae under my feet, people always ask if my foots ok & I’ve got to the point where I just say yes or unless I say my foot doesn’t hurt take it that it does!!
    I’ve now had an ultra sound injected steroid & can walk – flat footed & pain free!!!
    I had a flare up in my hand last week & was glad to see swelling so people can see I’m not ‘over exaggerating or making it up’.
    Its hard describing pain & proving pain when no one can clearly see the agony you are in!!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Beci~ I certainly understand how having a chronic illness can make work difficult and stressful. Just remember to keep in mind that if you have an RA diagnosis you have legal protections under the Americans with Disabilities Act (ADA). Your employer is required to provide you with reasonable accommodations and it is illegal for them to discriminate against you because of the RA. You don’t have to prove your pain – just your diagnosis. Hang in there!

  • jan curtice
    4 years ago

    Thank you for writing this article. I find that I don’t feel like just my pain is invisible, but that I become invisible because I have pain. Try going to ER when you have a pain disability and convince the doc that you aren’t there for drugs. When I retired, no one could understand “why” I could no longer work. They couldn’t “see” anything wrong, after all, we all have “bad days” … so, I stopped trying to explain. Since I was in a key position, the ugliness was unbelievable. Today, I am better being able to rest when needed and the meds still make me sick. BUT one thing I’ve learned, people who have experienced pain (self/caring for another) understand … the others are a brick wall, even if the signs are visible.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Jan ~ The invisible aspect of RA is often one of the most frustrating. I’m so glad that you have found our community here because we all understand what you are going through! Hang in there and remember that we are here to support you!

  • Wren moderator
    4 years ago

    Oh, Mariah. Have I EVER felt that way. And I’m glad to know I’m not the only one who’s been thankful, in a twisted, sorta snarky kind of way, that my fingers swelled or putting my weight down on my foot made me limp. It’s so weird to be in such pain–but look perfectly normal. And it’s hard to tell others, really. I hurt so often–and sometimes, for so long–that I’ve gotten reticent about it around others. I don’t want them to think I’m a hypochondriac-y, whiny wuss–and I know they would (and have) if I mention it. Sigh … thank goodness we can support each other here!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Wren – I totally agree that I tend to stop even mentioning my pain for fear that I will be perceived as whining all the time. I am so grateful to have this community of people who understands! Hope you are well!

  • KarenG.
    4 years ago

    People often judge, not knowing what is going on or why you act like you do. Thanks for this article. I would like to share it… Is that ok?

  • Mariah Z. Leach moderator author
    4 years ago

    Hi KarenG – Of course it is ok for you to share these articles! We want to promote as much understanding as we can for everyone living with RA, and sharing what we are going through is one of the best ways to do that! Hang in there!

  • Connie
    4 years ago

    Thank you for this article!!! I have had my family read it. Even though my hands and feet are totally deformed, I’ve had 3 spine surgeries, a total knee and ankle replacement, rotator cuff repaired, ulna nerve moved in my right arm… Plus both hip surgery is in my near future plus my other knee…. There are days they just kinda “forget” that mom is the one that needs help. There are days I just sit and cry for my old life, my old body. I didn’t ask for this and dealing with it sends me into a spiral of depression, which they really struggle understanding some days. They just know I’m crying again. They’ve always been able to count on mom for everything…and I worked through the pain for my family. Don’t get me wrong, they’ve been by my side through it all. I get spinal and shoulder injections every three months…. My disability was approved immediately, so they understand…. Most days. I think the hardest thing for them to understand is my depression. They tell me how loved I am…. And I know this. But longing for a body that’s not in constant pain and dealing with that pain is another thing all together.

  • Mariah Z. Leach moderator author
    4 years ago

    Wow, Connie, it sounds like you have really been through a lot! And as a mom with RA I certainly understand the need to work through the pain for the sake of your family – but it is still hard! And sometimes I think you are right that the emotional toll of RA can be worse than the physical one. I am glad to hear that your family loves and supports you and I hope that you are getting the help you need to deal with the depression. Remember that we understand and we are here to support you! Hang in there!

  • Andrew Lumpe, PhD moderator
    5 years ago

    I can relate to the notion of wanting some physical sign of RA so people wouldn’t judge. That’s happened a few times when I’ve had surgery. But I would never wish permanent disfigurement on anyone. Years ago my neighbor had a severe case of RA before the days of the current treatments and life was very tough on him. He had many outward signs of disfigurement and eventually succumbed to RA caused heart problems at age 63.

  • Mariah Z. Leach moderator author
    5 years ago

    I completely agree, Andrew. Of course I would never wish permanent disfigurement on myself or anyone else for that matter. It’s just that the invisible aspect of RA can sometimes take a different kind of toll on you as a person. So while I think this is an important topic I did personally find it a bit difficult to write about – because how can you feel grateful and frustrated by the exact same thing?

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