The Monster Under the Bed

The Monster Under the Bed

How many times did we cry for our parents at night, convinced there was a monster under the bed? At first, did our parents check underneath the springs, calmly telling us there was nothing to fear? How about the third, fourth or tenth time? Did they just go to the door and say, “just close your eyes and go to bed”? Did our parents believe us or did they think we were crying wolf because we didn’t want to go to sleep? It doesn’t matter whether we believed there was a gooey, three-eyed monster hiding underneath, our parents didn’t.

Let’s fast forward to adulthood…

When was the first time you bailed on plans with friends or family? What did they say? Did they say it was okay and that they hoped you felt better soon? What did they say the third, fourth or tenth time? Did they think you were convinced there was a monster under the bed when they couldn’t see anything?

My monster is RA

My monster under the bed is RA and I believe, no sorry, I know it exists even when other people can’t see it. My friends support me when I can’t go out or cancel plans at the last minute but as time goes on I get fewer and fewer invites.

There is a lot of baggage that comes with an invisible illness. Invisible baggage, of course, because why make things a little easier for those with chronic illnesses, right? We have pretty smooth sailing as it is so, of course, the universe throws us even more silent troubles.

Our bodies are on the rampage, apparently too dumb to do their actual jobs. Our immune systems are especially dense, sitting there and attacking perfectly healthy tissue. This all causes pain, inflammation, and destruction that nobody else can see until it’s too late.

But, it’s there when no one else can see it. The monster lurks in the darkest crevices under the bed. We tell people it exists and explain our fear: the fear that we might collapse during an outing with friends, the fear that staying out in the sun will drain our energy supplies for the next few days, the fear that if we move in one direction for too long we might do extra damage to our bodies. We explain it but people just don’t believe what they can’t see.

Sometimes a lone person or group understands, no, accepts we have inner turmoil and doesn’t let it affect their opinion of us. They offer help without asking or judging. They check in occasionally to make sure we’re okay.

Other than these few gems, RA is a very isolating disease because there are fewer visible signs compared to invisible ones.

Most people know I have Rheumatoid Arthritis at this point but other than actually telling them about the pain I’m feeling they won’t know what I’m feeling. I smile, I laugh, I make self-deprecating jokes and I play along with the more physically extensive activities.

I always prided myself on being strong, both physically and mentally, so it’s hard to show people my disability but, maybe I need to. Maybe I shouldn’t hide my limp or funny walk, maybe I need to use my cane more often, wince or say ‘ow’ when I feel pain, not smile through it all and ask for more help. How can I expect people to believe there is a monster under the bed unless I show them?

Do you have a support system? Let me know in the comments!

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 (23)
  • christijo99
    7 months ago

    Thank you so much for this article! My husband is my biggest fan, but I have A daughter with 2 grandchildren and at times I feel very bad about not being able to go and go with them. Makes it even worse, because her mother in law was just diagnosed with it also and will not treat it. Right now she is not hurting much so it makes it look like I am faking it, as everyone says, because she is not stopping or turning down invitations etc. My daughter is awesome and tells me she understands when I say I can’t do something, But I just do not think they understand. Thank you for putting in words what we feel. I want to share this article with my family so maybe they can Understand more.

  • tckrd
    7 months ago

    The sad thing about this disease is not only what it does to you but what it can do to marriages. Actually what can happen when your spouse can’t deal with your inability to not be able to do the things you used to do.

  • texastea
    7 months ago

    I understand this completely. My hubby at first couldn’t process the fact that I could no longer do the superwoman routine. I guess that he thought that I was faking because I looked fine on the outside, surely I should have deformed joints, right? I had to sit him down and explain firmly that this is the new normal and took him on a few doctors appointments. He adjusted and is now my biggest support. Hopefully it will get better for you as well.

  • Hawkeyes2
    7 months ago

    I feel bad today. I had brunch today with close friends and they lovingly treated me special..Yes, I have a great support system besides my husband.

  • Kimberly
    7 months ago

    I feel like a broken record, belly-aching about my condition. I feel guilty. finding myself apologizing

  • Monica Y. Sengupta moderator author
    7 months ago

    I feel the same way all the time, Kimberly and I know other community members feel the same frustration.

    It’s definitely a fine line about what to share or not, especially to strangers or familiars. Of course, you are always welcome here if you need to chat if you feel you need to talk!

    I thought you might like this articles: https://rheumatoidarthritis.net/living/speaking-truth-to-family-and-friends/ https://rheumatoidarthritis.net/living/what-tell/ https://rheumatoidarthritis.net/living/community-thoughts-how-much-to-share/

    Thinking of you, Monica

  • Bingo
    7 months ago

    I could relate to what you wrote so much.It was all so true and reading it I thought”Oh so it’s not just me then”
    Very few people in my life really see how my illness affects me.This is partly my own fault because I tend to shut myself off when I am having a flare.Partly because I don,t like people to see me in such a state as invariably they just don,t know what to do and partly because I just don,t want people around me as I cannot be bothered to even think about being sociable.A while ago now I had an appointment with my consultant whom I found was on holiday when I arrived.A consultant from another hospital was standing in.I walked in the room and the first thing he said to me was”wow,surely you don,t have rheumatoid arthritis?you look so fit!I could not believe the ignorance of the man especially doing the job he was.It really did upset me and felt as if he thought me a fake or something.If only he had taken the time to read my notes before he saw me!He should of known better!
    My support system are my husband and son who are probably the only two people who see me at my worst.Couldn,t do it without them!

  • Monica Y. Sengupta moderator author
    7 months ago

    Hey Bingo!! Thank you so much for sharing on my article!

    My heart hurts hearing this story. Doctors should care more or at least be more aware of their words. It’s a shame because they are the ones in control of our wellbeing!

    I completely understand about you feel about flares. I personally am just too proud to show people I’m in this state (even my family!) but I have gotten better with disclosing things to my father, at least. I am really glad your husband and son are understanding, a good support system makes all the differences in the world (especially after such a horrible doctor’s visit!)

    I thought you might like this article: https://rheumatoidarthritis.net/living/tips-for-doctors-to-become-more-patient-centered/

    And, thank you again for the lovely compliment. I’m glad I’m not alone in feeling this way too!! ~Monica

  • sandymm
    7 months ago

    I think one of the things I have found to be most discouraging is to find the number of friends I have left because of the RA. Most have left me, but I do have one or two who understand RA and come to check on me. It is very disheartening to learn that all the “friends” I thought were friends do not come around any more once they found I could not go when they wanted or participate in activities I used to do with them. Was I just a participant in their lives or did I really mean something to them? I think we find the true answer with any illness…who our real friends are.

  • Monica Y. Sengupta moderator author
    7 months ago

    hey sandymm, Angie8758, and jewel! Thank you so much for sharing on my article and helping me feel like I’m not alone!!

    I thought you might like these articles one on “invisible” friends https://rheumatoidarthritis.net/living/invisible-illness-invisible-friends/ and then one of mine https://rheumatoidarthritis.net/living/friendship-how-my-chronic-illness-helped/. I don’t generally share my own articles but I thought you might appreciate how I used my condition to weed out the “fake” friends.

    I still sometimes mourn my old friends, the ones I thought I was close to and apparently I was not…But, we have such small energy supplies as it is I think it’s important to just focus on the people that are still there!!

    All the best, Monica

  • Angie8758
    7 months ago

    Yes it’s the same for me. It hurts to think I’ve always been there for them but they fled as if I’m contagious. I feel so hurt and alone.

  • texastea
    7 months ago

    I felt the same about a close friend (I thought) that I had for over 30yrs. I was always there for her but when I needed her, she jumped ship. Initially she began to preach to me about what I should eat and how I should take care of myself in order to get rid of my symptoms, as if it’s that simple to cure RA. She wasn’t the only one who did that though, some family members joined in on the ‘take care of yourself to a cure’ club. The sad thing was that I used to be the wellness and fitness maven and at my fittest, I was struck down hard by RA. When I needed her the most, she completely abandoned me. The initial hurt because of the abandonment led to stress, which of course, isn’t good in our situation. I forgave her.
    I have learnt to appreciate the grace that I’m given each day to endure; the kind words of strangers who notice my discomfort and who offer assistance; the non-judgemental love and understanding of family members when I’m at my worst, and the exclusive club of true friends who love and support me without reservations.
    RA is no joke and the pain can be brutal but it exposes things within yourself and others, and in that regard, may be a blessing in disguise.

  • jewel
    7 months ago

    Sadly, I agree.

  • Leslie914
    7 months ago

    My spouse is a great support system but I assume she must get tired of hearing about the RA pain & issues. Hell, I get tired of it myself. I keep quiet unless I’m in a flare or exceptional pain.

    Her family lives in another country & we visit frequently. The flights/airports take a lot out of me & a good bit of walking takes place during the visit.

    I’m sure they think I’m lazy because sometimes I just can’t do the walking. I also get exhausted much faster than other people.

    I fight my way through as best I can. I love the family, I just wish I could be more active & keep up.

  • Monica Y. Sengupta moderator author
    7 months ago

    Hey Leslie914, thanks for commenting on my article!

    I totally year you with airports and flights. Just reading about your frequent tired fatigues me! I’m actually working on an article right now about my personal pride. Because RA is still an “invisible” illness for me I wonder sometimes if I actually need to outwardly show when I’m tired. I’m too proud sometimes to show how tired or painful I am so people just see me “being lazy”.

    But, I guess at the end of the day, it doesn’t really matter what those people think, as long as you have your partner!

    Thank you again for sharing!! ~Monica

  • BANelson
    7 months ago

    Your articles are the best! I can relate so much to them. Thank you–now I’ll push that monster under MY bed back.

  • Monica Y. Sengupta moderator author
    7 months ago

    @BANelson!! Thank you so much for your kind comment!!! I really needed it this morning. I’m also glad I am helping in empowering other RA warriors.

    All the best, — thank you for the smile! ~Monica

  • Sillysewer
    7 months ago

    I have a wonderful husband who is very understanding and reads all the articles on RA in order to better understand my problems.
    I am finding, however, that my friends have not been so understanding. I know they don’t understand and I am patient with them but lately I’m hearing less and less from them. I’m definitely not one to complain or go into any details when talking about the disease. I appreciate the article about “how much to say “. Thanks.

  • Monica Y. Sengupta moderator author
    7 months ago

    Thank you!! I’m glad I’m sharing articles that you find interesting.

    I was always a social person so when I was first diagnosed it really stung that my friends pulled away from me but as time goes on I find I appreciate my father more and more. The familiar support has been instrumental in managing my disease.

    Thank you so much for sharing on my article, sillysewer!! ~Monica

  • Annalisa
    7 months ago

    I’m very lucky to have a great support system of people who don’t mind if I decline or cancel events. Part of that is that I’ve always been a homebody and a morning person, so all my friends knew not to take my desire to go to bed at 9 personally.

    But I do think you have to share the specifics of RA sometimes, so people around you have a clearer idea of what you’re going through. Not constantly–I don’t even want to think about my body constantly!–but every couple of weeks I’ll be completely honest about how I’m doing. I think it helps people stay aware of why I don’t go out much.

  • Monica Y. Sengupta moderator author
    7 months ago

    I love this comment, Annalisa and I completely agree. It’s important to kind of know the line between disclosing and not talking about our RA. I thought you might find these two articles interesting: https://rheumatoidarthritis.net/living/what-tell/ https://rheumatoidarthritis.net/living/community-thoughts-how-much-to-share/

    Also, I thought I’d share my friends no longer text me after 8:30 because the chances of me being asleep already are very high. I actually really appreciate it!

    Thanks for sharing on my article!! ~Monica

  • Lawrence 'rick' Phillips
    7 months ago

    One big support system. Sheryl is incredible. After 41 years we tend to know each others thoughts and actions as soon as we know ourselves.

    Yeah I have support, the best kind.

  • Monica Y. Sengupta moderator author
    7 months ago

    I always forget I ask a question at the very end of my articles so when people answer them it takes me a beat to figure out what’s going on.

    I’m so glad, Rick!! I have people in my life I’ve known so long it’s the same way but I wouldn’t say they are a great support system 🙁

    Thanks for always commenting on my articles!

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