RA’s Secret Symptom

RA’s Secret Symptom

Rheumatoid disease (arthritis) has a secret symptom. It’s one that’s never mentioned by doctors or in medical texts in books or on the Internet, but it ought to be. In fact, I think doctors should be compelled to talk about it with their patients. It should be listed right up there along with pain, fatigue, and malaise. It should be right there, right out in the open.

What is RD’s secret symptom?

It’s fear–and everyone who has RD copes with it almost daily. We do it alone and we do it without support.

There are a lot of things to fear when you’ve been diagnosed with RD. Fear of pain tops the list. Once you’ve experienced your personal version of an eight on the ubiquitous doctor’s office pain scale (zero being no pain, and 10 being the worst pain you’ve ever felt), you can’t help but dread the thought of ever hitting that agonizing, excruciating level again. And surpassing it? OMG. Each new flare ratchets up the fear again. But no one mentions it. Not you, not your doctor, not your friends or relatives.

Fear of disability

Then there’s the fear of disability, both the current version and the disability you might face in the amorphous but oncoming future. RD pain can make us limp and gimp. We sometimes need to use a cane, or crutches, or a wheelchair or wear splints or braces. These devices are just useful tools, like sunglasses and shoes. They make living and getting around easier for us and allow us to live as normally as possible. But sadly, in today’s world, they come with a stigma. Somehow, people with disabilities are “other.” They’re seen as sick, as less than equal, even as contagious. It’s cruel and unreasonable, and makes life much harder for those who have to bear it.

Disability can make daily living difficult. Sometimes it’s hard to do simple things, like twist a lid off a jar or get dressed by ourselves. If RD attacks our temporomandibular joint–the joint that hinges the jaw to the skull–we might have a hard time opening our mouths to eat or even to speak. Disability like that can make us miss work, cancel outings with friends, and even just prevent us from getting out of the house for a while. Is there any wonder that disability–large or small–makes us afraid?

Fear of failing others

And if that’s not enough, we also fear of failing others because of the pain and disability our RD causes. If we’re in a relationship, or married, we might not be able to do our half of the daily household chores, or maybe we can’t manage the yard work. Pain or disability–or both–might interfere with intimacy when the lights go out at night. As parents, we might not be able to play with our kids like we think we should. We might need help with them that other young moms or dads don’t need. And as employees, pain and disability might interfere with our work. We might not be able to do the tasks we’ve been hired to do, or be as punctual as we should be, or even make it to work every day. These things–and many more–make up the fear that RD patients experience along with pain, disability, and fatigue. It’s the secret symptom, and it can be devastating.

The fear-symptom is real, and it’s perfectly normal. Who wouldn’t be afraid, faced with the challenges the average person with rheumatoid disease faces every day?  But fear can be controlled. Remember that the fear of something is usually far worse than the thing itself. The way to beat it is to live one day at a time. Don’t hide from the future, but don’t dwell on it. It hasn’t happened yet. Instead, be open and honest with yourself and others about your limitations–and about everything you can do, too, because there’s far more of it. Learn everything you can about your RD and be assertive about your medical treatment. Live positively by treating yourself well, eating healthy, nutritious foods and exercising your body to keep it strong. Forgive yourself when you fall short. Failure is a necessary stepping stone to success, after all.

Having RD can be scary. It’s a real challenge, but you have all the strength and courage you need, right there, ready to tap into. Remember to smile, laugh, enjoy the beauty of the world around you and be open to the small gifts it has to offer each and every day. Surprise yourself.

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

–ELEANOR ROOSEVELT, 1884-1962

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 (17)
  • tckrd
    2 months ago

    I guess I am pretty lucky. I am already disabled, use braces, splints, a cane and a wheelchair. I do fear not being able to do the work I want to do in our marriage

  • Westie
    2 months ago

    This article is great and will help a lot of new suffers.
    I was diagnosed in 1998 and I would like to bring to your attention one other aspect of having RA. That not only are the suffers ;
    In pain
    In fear
    Damaged in other ways by the medications we take for RA. These also contribute to misfortune of RA suffers.

  • Norreen Clark
    3 months ago

    Refuse to live in fear

  • Indigo2
    4 months ago

    I have fear at times however, now I try to
    find balance,
    turn the page,
    get enough sleep,
    simplify and have gratitude;
    let go of people who can not understand.

  • MrsT
    4 months ago

    I’ve had RA for 46 years(since I was 11 yrs old). When I was diagnosed, in 1972, they had NO drugs for JRA. I was given high doses of aspirin. As a consequence, I have alot of joint damage and deformity, especially in my hands.

    I don’t fear the pain; it’s just what my body has always felt, and it’s perfectly normal for me. (In fact I ‘play’ with the pain, use my mind to manipulate it.) I don’t fear the RA becoming worse; I understood from day one that its a progressive disease and that it will always be something to deal with. It just is what it is. I’ve never feared letting others down; Maybe this was because my family always supported me. I just do the best I can and if others can’t understand that, then that’s their issue, not mine.

    I have had a very different relationship with RA than you. I don’t experience the fears that you mention. Maybe its just that I’m ‘me’, a different person. Maybe something happened in my mind at that instant of being diagnosed that set me on a different type of path of life with RA. I’m not sure why such a different experience. I just know I don’t live with the fears you mentioned you deal with, and I wanted others to know…:)

    Thank you.

  • Hab4453
    8 months ago

    This article fits my RA experiences to a tee. I was diagnosed with RA, OA, and gout 5 years ago. Now at age 77, I struggle each day just to do the simple things I once took for granted. I had been on a biologic but recently developed a large ulcer on my lower left leg. My rheumatologist will not permit me to take any biologic until this ulcer heals. It has been 2 full months and still not healing. Has anyone else experienced this type of problem with their RA?

  • KarenG.
    1 year ago

    Amazing article….. Thanks so much!

  • Tich
    2 years ago

    Another great piece Wren. I was still working when I got my Dx, and was able to increase my employer-offered private disability benefit from 50 to 60% of my final salary during annual enrollment. This made a huge difference when I applied for disability ten years later. Still, the insurance company denied my claim and made my life very uncertain while I appealed and went through the whole ugly process. After nine months of economic fear I received notice of my award, and was able to draw a breath. Then as new symptoms came along my Cobra insurance expired and I was dumped into the marketplace as one with pre-existing conditions which would drive premiums up. My employer’s insurance plan for retirees was not available until I started drawing my pension, which had I started it would have thrown me out of the disability plan. So I thank Obama daily for ACA. It works for me. We need this safety net. We have plenty of other uncertainties to fear. Tell your kids to buy disability if their employer offers that. And vote for public healthcare law that prohibits exclusion of applicants with pre-existing conditions. Without it we really are sunk.

  • BLReady
    2 years ago

    Great article. Finally getting some coverage on this disease. Thank you for writing this. Often times, especially in the early times we do not even realize how scared we are. I was fortunate (although sceptical) to have a psychiatrist at my Rheumatologists office I saw for 6 months who helped me immensely through the life changing events. I’m eternally grateful for him.

  • Lawrence 'rick' Phillips
    2 years ago

    Fear can be both debilitating and empowering at the same time. For me, I was stunned with fear when first diagnosed. Then I was empowered to pursue aggressive treatment because of the fear of not doing so. Is one more powerful than the other? Again for me, it was the fear of not seeking treatment that has been more powerful. I realize that is just me and everyone is different of course.

  • sharoncookie57
    2 years ago

    I am so sick of feeling fear of what is to come. As I cannot do yard work or walk in the yard. I am growing my garden in big pots up with reach standing up. Went outside a walked over to get a small pot and started to fall and was able to grab hold of the tree trunk and steady myself.
    Can do floors anymore or wash cloths because they are in the basement.
    What is next year going to be like? Of course my fearful!

  • CatherineFH57
    2 years ago

    Amazing article which took some of the guilt away from not being able to do my share of the chores. I’ve often said that I’m so tired of being tired.

    I’ve tried for several days to get to the basement to do my laundry but I can’t keep climbing the stairs so I make a plan to stay down there half the day. We have half of the basement finished into a studio living area for the kids when they visit. My problem is I’m just so tired to get going in the morning from lack of sleep and fighting the pain in my feet, knees, shoulders, hands and my low back. It’s exhausting! At least this article helps me to understand it more.

  • Wren moderator author
    2 years ago

    Hi, Catherine!
    I’m so glad that my post about fear is helping you dissolve some of that “I can’t” guilt. It’s such a deadening emotion, one that can stop us before we even get a start.
    I love that you’ve worked out a way to deal with your laundry in spite of your fatigue and pain. Going up and down stairs to do that chore doesn’t sound like much until you try to do it with RD. Boy, do I get that! So yes, just plan a day “down under” resting while the washer and dryer work. Read a good book. Watch a movie. Just enjoy the downtime you’ve carved out of what was a dreaded task.
    I applaud your strength and ingenuity, Catherine, and I hope that this finds you enjoying the little gifts of the day. Thank you so much for stopping in and taking the time to comment! 🙂

  • Susan Slater
    4 years ago

    A great discussion of some of the fears we face when RD rears it’s ugly head! I faced the fear of disability that you touched on, and thought I had handled it pretty well, all things considered! I chose to think of myself as “differently abled”, rather than disabled, made adjustments to my lifestyle and was moving forward. Until I ran into the dreaded obstacle of discrimination, from the least likely source-my family! My father left a sizable estate when he passed away 4 years ago, to be divided between my brother, sister and me. He knew I was receiving Social Security disability benefits based on my diagnoses of RD and a heart condition which required the placement of a pacemaker, and that without the medical benefits I was receiving, I would deteriorate rapidly and not be able to live independently. So, he established a special needs trust for me, with my siblings serving as trustees of that trust. He meant well, I’m sure! But I am now in the process of taking my siblings to court, having filed a legal suit to have them dismissed as trustees of my trust. We were not a close-knit family; my siblings and I went our separate ways years ago. But I still would never have imagined that they would fall prey to the greed that often accompanies the position of trusteeship! After all, your family cares about you, protects you. My siblings have attempted, legally, to limit my access to the funds in my trust. I should mention that, upon my death, they, and my children, are heirs to my trust. If I did not have RD and a pacemaker, was not receiving SSD benefits, I would have received my inheritance outright, unencumbered, as my siblings did! But because of my medical conditions, my own siblings are treating me as a “second class” citizen, someone sub-par, impaired to the point that I can’t care for myself or notice that I am being cheated out of what is rightfully mine! I am struggling to make sense of the meanness of their actions, the disregard and disdain they obviously feel for me. I have an excellent attorney battling for me, and the support of the incredible people at my state ARC organization. But, I am feeling totally alone in my anger! I worked for years with children and adults with developmental disabilities, and I’ve seen the discrimination that is heaped on them almost daily. But I feel so alone in my fight, and desperately need a voice for my frustration! I would love to hear what other RD patients have faced and experienced in the way of discrimination. I want to shout to the world, to call attention to what my siblings, and others like them, have done simply because they don’t care, or haven’t taken the time to learn about RD and how it affects our lives! Thank you for giving me a place to share and vent safely-any ideas about increasing awareness are gratefully accepted!

  • CatherineFH57
    2 years ago

    My prayers go out to you that you will get the funds your father intended for you. When my husband’s father died, his sister and himself were to receive the sale of the family home and a division of the estate but never received it because my father-in-law’s step daughter and her lawyer were somehow able to take off with all the funds. Best of luck to you.

    As far as the discrimination, my sister had juvenile rheumatoid, my brother was diagnosed a years ago, my grandmother and great grandmother had rheumatoid arthritis. It was no surprise when my diagnosis was rheumatoid. I know it runs in families, perhaps members of your family will get our disease and will become sympathetic.

    I know how exhausting it is to go through each day. This article helped me to understand why. Perhaps your family members should receive and read the articles in this news letter as well as the judge handling your case. It explains the disability and why.

  • Darla
    4 years ago

    Thank you for the excellent post. A gift of describing our truth .

  • jan curtice
    4 years ago

    Well said! I think the fear also triggers alot of the anxiety and depression. Which in turn make the symptoms worse … vicious cycle. A couple of other fears I’d like to add to your list is the “fear of making plans” and the “fear of isolation”. Cancelling much anticipated plans is heart-breaking with deep disappointment. Also, I never knew what it felt like to be truly alone/isolated until RA came to visit and stayed. My support network is there … however, there are times I feel the RA has me captive and I can’t “reach” my loved ones. This fear drives me to carefully follow my doctors’ orders, eat right, go to physical therapy, and practice good sleep hygiene. In the midst of the pain, I remind myself the “true definition” of RA is “Really Active” … and one day that will be me again. I just have to find those times, places, and ways to make that happen!

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