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RA and the Zombie Apocalypse

RA and the Zombie Apocalypse

Rheumatoid disease (arthritis) is an “invisible illness.”

Everywhere I look, I see those two words. They’re blogged, tweeted, posted, and bandied about almost incessantly. And I can’t deny it: unless the disease has temporarily disabled you and forced you to use a cane or wear a splint, or caused your joints to twist out of place and disable you permanently, hardly anyone notices that you have it. In fact, most of us who cope with RD every day look great. We appear healthy. We clean up nicely. We smile. We go out of our way to hide our pain, fatigue, and illness from the world, and we’re quite successful at it.

Being the kind of person who’s always been mostly invisible anyway, having an invisible illness doesn’t particularly worry me. For as long as I can remember, I’ve blended with the wallpaper. People forget my face instantly. I have unremarkable features along with beige hair and skin, so I’m as neutral as they come. As a journalist, this invisibility is a real advantage. I can move easily around cocktail parties and town hall meetings, and no one ever notices me listening in on their conversations. I’d make a fabulous spy.

The downsides of invisible RA

Invisibility does have its downsides, though. It’s sometimes hard to get help with things when I need it. At first, it did really bother me when people ignored me. It’s hard to carry stuff and super hard to balance and maneuver the bleeping sticks to open doors. But discovering that I could manage the task myself in spite of my RD was enlightening, even satisfying. I might have looked clumsy and awkward, and sure, I dropped first one crutch, then the other, as people walked past without seeing me. But at least I didn’t have to suffer any direct embarrassment. Not even when I cried.


I’ll tell you when my RD’s invisibility really gets to me, though. It’s when I work up the courage to tell someone that I have it and they say, “But you look great!”

“Th-thank you,” I stammer. I wasn’t expecting a compliment.

Then, “I’ve got arthritis, too,” they say blithely. “It’s my knee. I take some (name your over-the-counter analgesic here) and that takes care of it.” They look at me like I’m some poor schmuck who hasn’t thought of trying that yet.

Usually, that’s when I give up. Because really, trying to explain the difference between rheumatoid disease and osteoarthritis is exhausting. You know: autoimmune, systemic, progressive, probably deadly in the end vs. wear-and-tear, localized, fixable, and non-life-threatening. RA pain isn’t like osteoarthritis pain; the cause is completely different. That’s why OTC painkillers generally work for it.

The never-ending list of RA “remedies”

Plus, if you don’t change the subject, your companion will probably start asking if you’ve tried a slew of other remedies. “Have you tried like gin-soaked raisins? My aunt’s cousin’s neighbor did that, and she’s cured!” Then there are copper bracelets (“Used successfully for thousands of years!”), Pilates (“just strengthen your core and the rest will follow suit!”), and the caveman diet. (“All meat and vegetables. No bread. Humans didn’t have bread in their early existence, and they didn’t have arthritis, either!”)

Sigh.

And who wants to hear, again, that you ought to lose weight, start exercising, stop eating gluten, get out more, stop thinking about your pain, lose weight, walk more often, and consider yoga? Some of those things might indeed be good for your health overall, but none of them will have the slightest effect on your screwed-up autoimmune system or your RD. Try to tell your helpfully earnest, superior friend or family member that and your words will fall on deaf ears.

Not only are you invisible, you’re voiceless.

Life with RA has made me tough

I will say this: having an invisible illness has toughened me up a lot. I can do all kinds of things I’d never have believed I could. I’ve gone on long hikes with my family during which they left me limping far behind. They were relaxing around the pond, tossing fishing lures at the bass when I finally caught up with them. No one asked where I’d been or what took me so long. If I’d been carrying the food, they’d probably have noticed my absence sooner.

The return hike actually got me some attention, though. By the time I made it back to the trailhead, it was getting dark and they were hungry. I’d forced them to wait around for me.

“Where have you been?” they barked as I limped slowly past them to the car. They acted like I’d stopped to party with Bruce Willis along the way. How could I be so thoughtless?

Being so invisible and able to do things alone and unaided in spite of my RD has given me great hope for the future. Not only do I know how much intense pain I can endure–and for how long–but when the zombie apocalypse happens and my able-bodied family has forgotten to take me with them, I know for sure that I can limp faster than a zombie. Staying a few steps ahead of the lurching hoards shouldn’t be an issue.

Actually, the zombies will probably think I’m one of them and leave me alone. Or better yet, they won’t see me at all.

What a relief!

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

  • DCSharon
    4 months ago

    Reading this now after an exhausting holiday season. Your story made me laugh but also feel bad that your family doesn’t make accommodations for you.
    I’ve had RA Dx for 28 years, and the past 5 years have brought 4 more autoimmune diagnoses and 2 herniated discs 5 yrs ago. I used to be slim, fit, and able to exercise. A combination of big doses of prednisone, inability to exercise the way I used to (I still do move, and need to move for my mental health more than my physical health, I believe!), menopause, and stress eating — due to health issues as well as life stressors– caused me to put on 40 lbs in 4 years. At this point I’m not “invisible” anymore as everyone notices I am squarely in the overweight category BMI when I was previously on the low end of normal or even underweight. I kind of joke about it but, despite having RA for so many years, this is the first time I don’t feel like I’m even in my own body, and that some people, such as my mother who has always valued being slim, has been somewhat condescending and not understanding the issues I’ve been contending with. So while I don’t feel “invisible” any more, I do feel judged and devalued for something that isn’t really my fault. I try to ignore, but it’s hard.

  • MareV
    5 months ago

    I needed this article today. I have 6 children who think RA is arthritis in joints. When I don’t feel good they assume my arthritic joints hurt. I don’t want to appear as a big baby, so I don’t say anything about How I really feel. The exhaustion hits me hard. My daughter and her husband both responded the same when I said I was really tired the day after Christmas. Their Reply “Oh was it hard going to the festivities? Never min that I made cookies all month and baked and cooked food to take to their houses, because our apartment is too small. They just don’t understand how sick I feel sometime. Thank God my husband supports me 100%, since I was diagnosed with RA 5 years ago!❤️

  • Richard Faust moderator
    5 months ago

    Hi MareV. Sorry you are struggling with the post-holiday recovery and dealing with some who don’t quite understand. On the positive side, as the husband of someone with RA (my wife, Kelly Mack, is a contributor here), it is always great to hear about a supportive spouse. Our contributor Tamara wrote this “love letter to all supportive spouses:” https://rheumatoidarthritis.net/living/love-letter-supportive-spouses/. Wishing you the best heading into the New Year and know that this community is here for you. Richard (RheumatoidArthritis.net Team)

  • Tamara14
    5 months ago

    Awesome article – it made both my husband and I laugh out loud. Thank you!

  • Dingie56
    5 months ago

    I enjoyed your article and a true look at the general life of a non-end stage person.

    I am unable to use any NDAIDS, failed DMARDS am doing better on Methotrexate.

    The majority of friends I have shared my RD diagnosis are medical friends. I hold a MA in nursing and am done with PhD work but put the dissertation on hold due to a host of medical issues including RD So sad about this but retired early with my hubby

    A super help, but still want to finish.

    Surprisingly me friends also suggest OTC meds, tai Chi etc.

    I am unable to utilize OTC or prescribed NSAIDS as I am on blood thinners, so no to those.

    Thanks for an article that provides a synopsis into the life of RD patients!

  • Glacier1960
    5 months ago

    An add-on to my comment: I have never complained or even talked to my nephew regarding my RA. So this criticism came out of the blue. I was stunned.

  • Glacier1960
    5 months ago

    I love this article, it really made me laugh. My nephew told me a few days ago that (using his words) veterans who’ve had their legs blown off recover to do triathalons, and I’m not suppose to allow myself to be defined by my disease. So apparently I’m suppose to be able to run a marathon even tho I’ve had both knees replaced and my ankles and hips are in bad shape? My response was that he doesn’t get to lecture me on something he knows nothing about. So unfortunately I completely understand being left behind while limping to catch up. I’m grateful, however, that other members of my family kinda get it.

  • Alesandra Bevilacqua moderator
    5 months ago

    So glad you enjoyed the article, @glacier1960. I’m sorry to hear about the criticism from your nephew. That must have come as a shock to you. Know that this community understands, and that we’re here for you anytime. Thinking of you today <3 - Alesandra (RheumatoidArthritis.net Team)

  • Glacier1960
    5 months ago

    An add-on to my comment: I have never complained or even talked to my nephew regarding my RA. So this criticism came out of the blue. I was stunned.

  • jessedunkin40
    5 months ago

    Hi, I am new to this site. I absolutely loved this article. I am plauged with several autoimmune diseases but its R.A. I have had the longest. This is the first time I have really smiled all week. it’s been raining and cold and I would have definitely been seen as a zombie right now. I have to admit that its nice to know that other people really understand you. Thank you

  • Richard Faust moderator
    5 months ago

    Hi jessedunkin40. Welcome to the site. Hate what brings you here, but glad you have sought out a place you can get information and support. There is a lot to be said for being understood. One of our contributors wrote a ten part series on things she would tell her newly diagnosed self (I recommend all of them) and one of them is to “Find Community:” https://rheumatoidarthritis.net/living/no-8-find-community/. Best to you. Richard (RheumatoidArthritis.net Team)

  • Alesandra Bevilacqua moderator
    5 months ago

    Hi @jessedunkin40 and welcome! I’m so glad to hear this article made you smile. We’re so happy you found us and joined our community. Please come here anytime you’d like! – Alesandra (RheumatoidArthritis.net Team)

  • dedek
    5 months ago

    I have had RA for 35 years and have heard just about every comment going. If I am having a good day, I just nod and go on. I did not choose this wicked illness. It is beyond horrible at times. I have tried most remedies and most meds for RA but since I have developed a blood condition, I can no longer take biologics. It is hard when people do not understand. The disease it self is sometimes hard to understand and trying to push on often doesn’t work. I take it all with a grain of salt. I stay informed, read up on the latest and pray for a miracle. God bless all of those coping the best they can.

  • Alesandra Bevilacqua moderator
    5 months ago

    @dedek, I appreciate you sharing so openly with us. This condition truly is wicked – you hit the nail on the head with that one. Thank you for sharing your support with fellow community members. Please come here and share with us any time you’d like! I’m thinking of you today. – Alesandra (RheumatoidArthritis.net Team)

  • NPEOttawa
    5 months ago

    Thanks for this. You have kept your sense of humor, which must help all round. I try to, but it’s sometimes hard in the face of the dismissive, disparaging remarks from others.
    As always, it helps so much to know I’m not alone.

  • Alesandra Bevilacqua moderator
    5 months ago

    Glad you’re here with us, @npeottawa! You definitely aren’t alone in this battle. – Alesandra (RheumatoidArthritis.net Team)

  • joeyk
    5 months ago

    Laughing to tears! Thank you for this article!
    My poor hands and toes are twisting, one to the west the t’other to the east. Can’t count how many times I’ve been shown a painful joint on someone’s index finger or thumb, “I have arthritis, too”. I just give them a hug, after all, it all hurts! What people usually are seeking is reassurance their hands won’t look like they’ve been mangled in an industrial accident, like mine do. And hearing all those same old remedies… again and again! I say, “Those only work for Osteoarthritis, maybe it’ll help that pain in your thumb”. How I wish those easy fixes would work! I would still have a full head of hair and wouldn’t feel so awful after the weekly dose of medication, that’s supposed to slow this “RD train” down. Another subject for another day. Thanks again for the laugh!

  • Richard Faust moderator
    5 months ago

    Thanks for writing joeyk. I think you are onto something about people wanting to know they won’t have the visible deformities. My wife, Kelly Mack (a contributor here), was diagnosed at two, has used a wheelchair since her late teens, and has very visible RA in the hands. Often people aren’t sure how to approach/handle her, but she manages to keep her sense of humor and laugh. She made this video about finding the humor in RA, including the troubles we have with directions because I can’t tell what way she is pointing: https://rheumatoidarthritis.net/video/video-finding-the-humor-in-ra/. Best to you and keep laughing. Richard (RheumatoidArthritis.net Team)

  • Alesandra Bevilacqua moderator
    5 months ago

    So glad this article made you laugh, @joeyk! Thank you for sharing with us! – Alesandra (RheumatoidArthritis.net Team)

  • ballisonmoon
    11 months ago

    I absolutely agree with everything you shared concerning the invisibility of this disease. Especially, within the first years of my diagnosis, I was routinely told how great I looked. Also, the typical, well you certainly don’t look it comment was my favorite. However, I also get frustrated with family members who use my illness as a means to excuse their behavior, or lack of informing me of something that I need to know. We just didn’t want to worry you, you’re sick. Bring treated respectfully is all I think any of us are asking others to do. If you care about me, get to know me and my disease. How does it play into the situation or does it? We aren’t our disease, but we do have to carry the membership badge everyday. But, if people will just ask me, I can tell them alot they should know.

  • mpiccone
    1 year ago

    Just realized that could have been me posting this. I really feel that no one understands me. I have had pain throughout my 71 years. Besides RA i also have osteo arthritis and to top it off have been dealing with lumbar spinal stenosis. I was working as a temp, and from October to February I was hospitalized 3 times for pneumonia. The last time hospitalized I was fired. Unreal.

  • Jo J
    1 year ago

    I sometimes travel with my sister – who is a FAST walker! She leaves me in her dust between the hotel room and elevator. The elevator itself is a compromise as she prefers the stairs, but happily takes the elevator with me. On the last trip, I headed down the hall before her hoping to arrive at the same time. Next thing I know she’s passing me by only to wait at the elevator for me. LOL! We talked about it and she said “It hurts me to walk slow.” I’m taking that at face value and will keep meeting her at the elevator.

  • barbara1776
    1 year ago

    I loved your article! It is so true, and touched on just about all the things that make me crazy! And i thought I was the only one who had gin-soaked raisins pushed at them!! A few more of my favorites: “why do you have so many pillows?” Calling her teenage son “why dont you come walk with us? We’re walking REALLY slow” and “what do you mean you cankt walk there? It’s only six blocks!”

  • FreeThePixie
    1 year ago

    I Love this! So, so true, and just what I needed today.

    Here’s to the zombie apocalypse & being invisible 😉

    We shall overcome! X

  • Kay
    2 years ago

    Thank you this article really hits home. I don’t know how many times, after being told ‘you look great’ I’ve quoted my mom who always said, “Just because the inside is falling apart doesn’t mean the outside has to follow suit”. As I lay here dealing with another flare I actually laughed when I got to the end! As we’ve all heard, sometimes you have to laugh to keep from crying.

  • Wren moderator author
    2 years ago

    Hi, Kay,
    I’m delighted that you got a laugh from the article. As Richard says below, it really can improve health–and just smiling can stimulate little bursts of feel-good endorphins in the brain. I hope by now that flare you had when you were reading is long gone, and that you’re feeling a lot better now.
    Hang in there. Thanks for taking a moment to comment. And hey–don’t fear any zombies! 🙂

  • Richard Faust moderator
    2 years ago

    Glad you find the article helpful Kay. Laughter absolutely can be helpful. In fact, in this article one of our contributors writes about how laughter can actually improve health: https://rheumatoidarthritis.net/living/laughter-truly-is-the-best-medicine/. Also, in this video another contributor, Kelly Mack, discusses finding the humor in RA (full disclosure – I am Kelly’s husband): https://rheumatoidarthritis.net/video/video-finding-the-humor-in-ra/.

    You mention the phrase “laugh to keep from crying,” but I wanted to let you know that it is o.k. to let the tears flow. This article discusses the science behind why a good cry can do you good: https://rheumatoidarthritis.net/living/cry-a-river/.

    Hope this information is helpful and that your flare subsides soon. Best, Richard (RheumatoidArthritis.net Team)

  • KarenG.
    2 years ago

    I can relate to this article. Unless I tell people I have RA / RD, they wouldn’t know it….. Thanks for sharing!

  • Jules0705
    3 years ago

    I adore (and miss) you Wren! I agree with every word.

  • Philanthartist
    3 years ago

    I read this to my husband as he drove me to the lab. We both LAUGHED OUT LOUD! At my disease! That is a first and it felt great. Thank you!!

  • Jillian S moderator
    3 years ago

    Philanthartist,
    We are glad you got a good laugh out of it!
    Thanks for being part of our community.
    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • dgeg
    3 years ago

    Like, kind of. Having RA for 9 years now I can relate to everything written in this post, however I do question why things such as yoga and diet are called out as ineffective. I am sorry, but they DO help or maybe I am special as they do help me. I clearly notice more swelling of my joints when I eat sweets and breads, and my morning yoga definitely keeps me moving. Yes, RD/RA is a systemic and progressive autoimmune disease which is why we need to learn ALL the tricks for controlling inflammation throughout our bodies so as to slow it’s progression. Exercise and diet play a huge role in my opinion.

  • Jillian S moderator
    3 years ago

    dgeg,
    Thank you for your comment.
    It is unfortunate that non-pharmaceutical aspects of managing chronic disease such as diet/nutrition and exercise don’t get the attention they deserve. Like you, making healthy changes to diet and incorporating routine physical activity has improved the quality of life for many with RA. In addition to our diet/nutrition link, we also have a section on exercise: https://rheumatoidarthritis.net/exercise/

    I also thought you might be interested in alternative therapies: https://rheumatoidarthritis.net/alternatives-therapies/

    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • dgeg
    3 years ago

    As a matter of fact, I just noticed there is a Diet and Nutrition link on this website. Wouldn’t it be better to advise people to respond to comments recommending a food, or an exercise, or some holistic remedy with thanks for their concern and acknowledgement. And then confirm for them that, yes, unlike osteoarthritis which only affects the bone and joint cartilage, ALL of these things need to be explored in order to slow the progression of RDRA which is a systemic and progressive chronic disease that affects our joints, organs, overall strength and mental clarity.

  • Brenda Gordon
    3 years ago

    Hi Wren, Thank you for sharing such thought-provoking stories. I read all of them. I have to say your description of your hiking adventure with family made my heart ache a bit. That bothered me more than the exhaustive RD explanations we offer people we care about does. I do not offer RD explanations to acquaintances unless they specifically express an interest or ask. My experience/opinion may be different if my condition was a larger impact or more visible in my day to day life. But right now, I am blessed to have slowed the progression with the prescribed treatment plan and people do not notice or ask questions. When they do; however, I do not use the term arthritis. I describe my condition as rheumatoid disease, the term is not as widely known and the listener doesn’t immediately begin thinking of what they will say next because they think they have a helpful solution to share with you. For the first 3 years I did not understand the frustration people shared regarding trying to explain to others. It wasn’t until recently that I felt a tad bit of frustration with a specific person whom I have invested a lot of my time explaining previously. I was ashamed for feeling frustrated because the person truly wants me to be well and never suffer again. It is such a delicate balance we have to keep. Sigh.

  • qn60yc
    4 years ago

    Hi , I loved your story. I suffer with RA , Lupus , Scleroderma , Sjogrens and Hereditary Angioedema . I’ve had a total thymectomy and total rt hip replacement and deal with recurrent pericarditis among other things. I have been told about gluten , my total diet that if I went to a homeopathic Doc I’d be cured. I’ve tried to explain Lupus and RA and all Autoimmune disease is chronic! It’s upsetting that some people don’t understand . I’d love to meet someone who had been diagnosed with all these things and by a simple diet change was cured. I’d think if it was true we would be reading about how no gluten cured everything. How do I deal with this? It’s so frustrating . I was told by one of my Doctors I could change my diet but its not going to cure me. I’m sick of being sick but trying to explain “why aren’t you getting better”? To someone about what chronic means has got to be the most frustrating thing on earth. I wish you could post thus to FB so some of these people could read your story . I loved the”gin soaked raisins”! I got a big laugh and its great to laugh lately. Thank You again for your story I can relate.

  • Wren moderator author
    4 years ago

    Hi!
    I’m glad you enjoyed my story so much. Really, communicating the reality of chronic disease and pain seems nearly impossible. I think it may be because until you’ve had one of them, you just can’t understand it. And, I think it’s also because we’ve become a society that expects instant cures. We go to the doctor, she writes us a prescription, it fixes our ills. That, and instant gratification … ah, well. In the meantime, you and I just continue to do the best we can, right? We eat as well as we can, take our meds, try to move our bodies, and try to stay upbeat and hopeful. In the end, that’s all we can do.
    Thanks so very much for commenting. I admire your courage and sense of humor in the face of your challenging (understatement) health, and I’m so glad you took the time to share your thoughts. Please stop by again, OK? 😀

  • rhonda
    4 years ago

    This is the story of my life. On the outside we look fine,but inside out joints are not fine. Sometimes it is hard walking around with this invisible disease. On those days it sounds good to say “I have rhumatoid disease thats why I’m slow”. Unfortunately most people don’t have a clue what that is so then we would spend 20 min.explaining. Its easier to be invisible. Thanks for story. We can all limp along together when zombie apocalypse comes along. Lol

  • Vonda
    4 years ago

    Yup! You have expressed how I feel sometimes – I’m going to share this with my family. You words may enlighten them! Thank you, Wren!

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