• About Me
  • Supply Sites for Arthritis Friendly Nail Art
    • Disclosure Policy
  • The 31 Day Nail Art Challenge
  • Dumb Sh*t People Say: RA Edition

the Rite of Aging…early

~ Navigating Rheumatoid Arthritis through Beauty and Nail Art

the Rite of Aging…early

Tag Archives: dumb shit people say ra edition

Dumb Sh*t People Say: RA Edition – Series Five, Part Two

12 Wednesday Feb 2014

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ Leave a comment

Tags

depression, dumb shit people say ra edition

“How are the aches and pains?”

 

There are two sure-fire ways to see who your true friends are: death and disease.

Okay, maybe not death because everyone and their dog will offer condolences. However, disease never fails.

Everyone will say “That’s so awful, please do not hesitate to ask me for help.” I am not going to get into why this comment irritates me (another series!) because only a fraction will follow through.

Ever since I was in the hospital, I saw the difference between true friends and those who said they were. There were the people who showed up at my doorstep, unannounced, with dinner. They were the ones who sat with me while I snoozed and got antsy from laying down all day.

Then there were the people who “freaked out” but did not check in on me for two weeks. FYI: If I was not better after ten days of antibiotics, I was probably dead.

 

These are the people who do not necessarily believe I am ill. Sure, I make jokes and poke fun at my illness. That is how I cope. I have to find it funny or it will destroy me. But what upsets me most is that people belittle my situation because of that. Do you think it is easy watching my body attack itself? Destroy my mobility, my eyesight, my organs? Is it that hard to believe there is something serious under all the jokes?

Being in the hospital was scary…no, let me take that back, waking up that morning, not being able to move from weakness, my head pounding so badly I could not even lift my head, my body sweating but shivering, not feeling pain but knowing something was terribly wrong….that was scary.  When I finally managed to fish my thermometer out of my bedside cabinet and put it under my tongue, I read the final verdict and freaked out.

102.5 degrees?! I never had a fever so high, even as a child. This was serious. My body was no longer capable of fighting infections, lowering body temperature, or keeping itself healthy. A fever this high, just like in cancer patients and all immunosuppressed patients, was life-threatening.

What was I going to do? All I wanted to do was lay there and sleep, close my eyes and hope it went away. I went through the motions, I called my doctor, I called work. I was all set to fall asleep again when my rheumatologist called me and said I had to go to the doctor. I was too weak. He told me I could not stay like this. I had to call 911 and get to a hospital.

I was lucky. It was only a sinus infection: one I already knew I had and was on antibiotics for. Annoying, but it eased my mind. Now all I had to do was recover.

I am not saying every person who knows about my condition needs to google it and understand what I am going through. I am saying these people should not bother to ask about my health if they roll their eyes when they see visible symptoms. Initially they seem caring but when it comes down to the wire their true colors show. They get annoyed, they act like my condition is a burden on them.  I am “crying wolf” or “asking for attention”. This is absurd! When my condition is visible I am suffering. When my condition is invisible, I am suffering. But when they finally notice, these people turn away.

I do not tell people because I want them to feel sorry for me or give me special treatment. I just do not care. I kept this disease a secret for almost three years! Now, it seems pointless to keep it under wraps.

It is lonely knowing I cannot count on anyone else. This comes with the autoimmune territory. It is lonely knowing nobody wants to understand what I am going through. I am alone, I only have myself. I am okay with that. My mother taught me how to take care of myself, be self-sufficient.

I may not need anyone, but it does not mean I do not want to feel connected to people.

After my hospital stay, I felt completely disconnected. I just saw blurs of happy people who just saw the one day stay (nbd, right? I’ve been in the hospital longer) and having to take  time off from work (lucky duck, I wish I could take time off work for being sick!)

I am glad this was a joke to those people. I am glad it was no big deal. I am glad they think it is an excuse for me to pull out when I feel like it. Here’s the truth: It was a big deal. It was my health. It was one more step towards my body falling apart: my body cannot take care of itself without assistance.

 

But, as my best friend says, I do not have to be around those people. I can find new people to hang out with. People who do not know about my condition. She says it sucks to know there are few people in my life who will stick by me but I cannot control what people think of me, I have to live my life to the best of my ability, believe in myself and distance myself from those who do not. My best friend will laugh and call me a “hater” and maybe it is true. I sometimes find myself having very little faith in the human race. People disappoint me because they are superficial, flaky and ingenuous.

After all, words without actions are meaningless, right?

 

Hi, my name is Monica and I have RA.

Like it? Please Share!

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Like this:

Like Loading...

Dumb Sh*t People Say: RA Edition – Series Five, Part One

22 Wednesday Jan 2014

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 3 Comments

Tags

depression, dumb shit people say ra edition, rheumatoid arthritis

“How are the aches and pains?”

 

This is not “how are you feeling?” this is “how are you feeling, in your own head?”

I have touched on people’s “suspended belief” before in the first series, and it still holds true. More often than not, people do not want to delve any deeper than words. The cannot help but think most of this disease is me. On the surface, they care but without the action. They look like good people without working to back it up.

 

Then there is my “inner demons” theory. How much of this is in my head? If people cannot see me struggling maybe I am giving this disease more influence and in turn it is making me worse. Instead of thinking I wonder what I can achieve today I think I will achieve everything; I can beat the RA.

Unfortuantely, as anyone with an autoimmune knows, this is not how it works, as much as we wished it is true. Thoughts have a power over us but not so much so as to change an entire disease.

Over the last few months, I realized being ill is the best way to see who my true friends are. Never once did a good friend ask me “how are the aches and pains?” They see when I struggle and they help. They express concern, they check in. They are aware.

People who ask “how are the aches and pains?” rely on words. They appear considerate while fueling their own suspended belief in me.

 

Hi, my name is Monica and I have RA.

Like it? Please Share!

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Like this:

Like Loading...

Dumb Sh*t People Say: RA Edition – Series Four, Part Three

27 Friday Dec 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ Leave a comment

Tags

dumb shit people say ra edition, flare

I thought I had posted this and turns out I never did!! Yikes!!

 

“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

Well, the silver is right in there. You may feel lazy for taking a rest day and will not take one, while I can take one and not feel bad about it!

Sure, this is different from playing hooky from work to watch the game at a bar, or sky-diving, or taking time off work to do something fun. I cannot do anything too physical. But, so what? I get to lay in bed, read, Netflix, watch movies, and sleep!

And that sounds like a pretty good day to me!

 

Hi, my name is Monica and I have RA.

Like it? Please Share!

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Like this:

Like Loading...

Dumb Sh*t People Say: RA Edition – Series Four, Part Two

19 Tuesday Nov 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 6 Comments

Tags

dumb shit people say ra edition, flare, rheumatoid arthritis

“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

It is so not okay to say this to anyone. Ever.

I do not need the reminder of how crippling RA is.

This is not for fun and games or to play hooky from work (Though, I have been lucky in I have not missed work because of it).

Sometimes it is the only way to take down a flare!

 

If I cannot get out of bed, brush my hair, climb the stairs, and I am already on the highest, safest dose of medication, how else do you expect me to take down a flare?

Why is this different from when you are sick with the flu?

It’s not.

 

I think people are incredulous because sleeping all day it is for “sh*ts and giggles” and laziness. To them, it is a choice.

Not for me.

For me, it is a necessity.

I cannot think of anything less fun than feeling more dwarfed by my auto-immune on the days I am chained to my bed.

 

When I bow out of plans I only say I am not feeling well. I no longer mention anything about rest.

People cannot imagine that it takes this much sleep to recover from a flare, so the first thing most people think is I am faking or trying to get out of something.

 

No. 

 

I need to do this to be functional.

And no.

 

I am not lazy.

 

Hi, my name is Monica and I have RA. (And in order to manage it, I take “sleep” days.)

Like it? Please Share!

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Like this:

Like Loading...

Dumb Sh*t People Say: RA Edition – Series Four, Part One

09 Saturday Nov 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 4 Comments

Tags

dumb shit people say ra edition, rheumatoid arthritis

“Don’t you feel lazy when you have to sleep most of the day or rest?”

 

To see the accompanying nail art, click here.

 

I did not. Until you said that. And now I am angry at you.

Seriously? Obviously, you are able-bodied. The problem with rheumatoid arthritis is I do not know if I am going to flare up or when.

What I do know is if I over do it, I will flare up and I have no choice but to rest.

Sometimes, medications just do not cut it. I have to sleep. I have to stop, let me body rest, and re-coop.

Sometimes, a nap is enough to keep my energy levels up and pain levels down. Sometimes, I have to take more than one nap a day. Sometimes, I have to sleep all day.

Medications are great, they make me feel great….or greater than I could feel. However, sleep is the best medication.

 

So, what is the difference between you sleeping all day when you have the flu and when I have a flare? Nothing.

So, why should I feel bad when I rest?

 

I will not lie. I wish I did not have to nap as often as I have to. I have things I want to do on my days off from work, I have errands to run, a life to live…

It is just one of those unfortunate “side-effects” of having an auto-immune.

And you know what? If taking a “rest day” ensures I can function for two or three days at a time, I am going to take it. And not feel lazy.

 

Hi, my name is Monica and I have RA.

Like it? Please Share!

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Like this:

Like Loading...

Dumb Sh*t People: RA Edition – Series Three, Part Three

25 Friday Oct 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ Leave a comment

Tags

depression, dumb shit people say ra edition, rheumatoid arthritis

“Is RA contagious???”

 

The silver lining is I can easily separate myself from the people who make me feel worse.

 

I was always one of those people who went into every relationship preparing myself for disappointment.

I know it makes me sound like a holier-than-thou brat but honestly, I realized very early on that people are selfish.

I can count on my closest friends to not treat me differently. They support me and never make me feel bad about this illness. They are my closest friends for a reason. They are the people who I think are selfless, caring, and happy. They are willing to make small sacrifices for me (like instead of going out, staying in and watching TV, etc.) They never ever come back and throw those situations in my face. They are the people I want and need to surround myself with.

Most of the people I have been friends with for more than ten years, some less.

Recently, I deluded myself into thinking that my co-workers and others actually cared about me. Was I wrong. I carried around a false sense of security. They talked the talk, but if the RA affected them they turned and said it burdened them.

Over the last couple of months, I realized that I need to re-adopt the wariness I always had. If someone cannot support me with this illness I don’t need to spend time on them. Sorry, but this is with me for life and I cannot waste energy convincing people this disease will not affect them.

It could take weeks or months to fully gauge how supportive someone can be, so I guess I should thank these people. In just a couple of minutes, with questions like these, they are telling me everything I need to know.

 

Part One

Part Two

 

Hi, my name is Monica and I have  RA.

Like it? Please Share!

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Like this:

Like Loading...

Dumb Sh*t People Say: RA Edition Series Three, Part Two

25 Friday Oct 2013

Posted by MonicawithRA in Dumb Sh*t People Say Series, Rheumatoid Arthritis

≈ 2 Comments

Tags

depression, dumb shit people say ra edition, rheumatoid arthritis

“Is RA contagious???”

 

I am more sensitive than usual, especially given all the mean comments aimed at me recently but this one really upsets me.

I do think it is a legitimate question and it is definitely not meant to make me feel bad. Honestly, it’s not the question but the meaning behind it.

 

Part of the reason I did not tell anyone about the RA for almost a year was because I did not want people to treat me like I was sick. People act a certain way when they know someone is sick, it is human nature. There is the part that feels sorry and there is the part that is wary and concerned about how this affects them.

This question unmasks the selfishness that everyone feels. Some people are just better at hiding it, but everyone feels it.

It is easy to talk the talk, but when it comes to actually supporting someone very few people follow-through.

 

If I tell someone about the disease, they automatically see me differently. It’s like a light switch. The tone of the conversation changes, they treat me like I will break.

 

I have been more lax about who I tell about the RA, but I am still cautious. Do you think I would tell you if I wanted pity?

I don’t want pity! I want support! I need to know that even though I have this sometimes crippling disease, you will not treat me any differently than before. I want to know that I can do and achieve the same things. Can I treat this disease like another interesting fact about myself?

No. Apparently not. This isn’t like a poorly executed tattoo…this is an illness, a sickness. People are innately too selfish to see it any other way.

 

Unfortunately, most people just think about themselves. They don’t see someone who needs support, they just worry about how I, as the person with this disease, will affect them.

 

Part One

Part Three

Hi, my name is Monica and I have RA.

Like it? Please Share!

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Tumblr (Opens in new window)

Like this:

Like Loading...
← Older posts

Please subscribe to stay up to date on my RA journey. Join the Spoonie family today!

Follow the Rite of Aging…early on WordPress.com

Follow Me on Social Media!

  • View monicawithra’s profile on Twitter
  • View monicawithra’s profile on Instagram
  • View mysengupta’s profile on Pinterest
Living with RA: the Rite of Aging...Early

Archives

Categories

Ebates Coupons and Cash Back
Born Pretty Store 10% off code - Monica with RA @monicawithRA

Website Powered by WordPress.com.

  • Follow Following
    • the Rite of Aging...early
    • Join 130 other followers
    • Already have a WordPress.com account? Log in now.
    • the Rite of Aging...early
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
%d bloggers like this: