"Where there is creativity, there is hope." ~ Donna Karan

Friday, July 15, 2011

Feeling Like A Loser: The Social Impact Of Invisible Illness

* I've grappled with the decision on whether I should publish this post for the past few months. I pride myself on writing honest material and this is by far the most honest and personal post I have ever written.

By posting this I am opening myself up to judgement and risk feeling very vulnerable but I felt that I should publish it because there may be others out there that will benefit from reading this.

I'm usually extremely open about my struggles with chronic illness on this blog because I believe that by being brave enough to talk about it with honesty and a passion for awareness that one day someone else will be blessed because of it.

That because of me, someone can know how to respond and reach out to a chronically ill person. That a person can say I've heard about that illness and I know a little about it. So that people are well educated on how to encourage someone who lives with chronic pain and disability.

*Insert freak out here *

I was never one of the cool kids on the block. I was a victim of bullying because I wasn't afraid to stand up for what I believed in and what I thought was right. I was usually one of the last to be chosen when a student was put in charge of selecting who they would like in their group or team.

I was picked on for being the quite natured person that I am. The shy reserved personality I genetically inherited was viewed as a flaw. I've copped snark, criticism and judgment and I've been mistaken as a snob on several occasions because people simply didn't take the time to get to know me properly.

It's no surprise to me that as a young adult I struggle with mild social anxiety disorder at times. Given my past it's inevitably normal.

In conversation I can be very closed and guarded, particularly if I'm paralyzed with anxiety.

Maybe to some I come across as unfriendly and appear unapproachable, but that's not the person I am and that's not the person I mean to be.

I don't want to be that person but it's just that it feels like all the air has been sucked out of the room and I'm struggling to breathe.

Just to stay standing in a group of people takes all the strength I have when everything within me just wishes that the walls would swallow me whole.

I don't like to be the center of attention and I much prefer to sneak into events unannounced and unnoticed. I will never be the life of the party, that is just not me.

I will never leave a room full of people with everyone knowing my name. I will never be popular.

That is OK with me.

I've come to be content with the person I am and despite dealing with anxiety at times, I've never let it take my life hostage.

I still socialise, I enjoy meeting new people and having a great time but being diagnosed with multiple chronic "invisible illnesses" has changed this. Socialising is something I really struggle with now.

(image via)

My social life has really suffered not only due to debilitating pain and fatigue but also because of peoples rude, ignorant and inconsiderate responses to my illnesses.

The social ramifications of invisible illnesses are staggering, and the stigma attached to being sick is really stretched when your symptoms cannot be seen.

Socialising with an invisible illness is incredibly difficult and is an issue that isn't often talked about. It's a bloody battlefield. Being a young adult is especially tough when immaturity and ignorance is at its peak.

It's hard to find support in a visually orientated society and because pain often shows no physical signs, people- including health professionals- will often not believe sufferers are in pain which is one of the reasons they are at such high risk of depression, anxiety, social isolation and relationship breakdown (1).

There have been countless times when I have had to bite my tongue, hold back the tears and fight the urge to slap some people.

Lately, I've been feeling like a real loser with a capital L. As much as I want to socialise, I don't even feel like it anymore. I feel like I have nothing to talk about because all I do is stay at home and do a little bit of this and a little bit of that.

This makes me feel like a loser. All of my friends are out living and enjoying their life and I feel left out and left behind.

I'm a young woman on disability who is housebound most days and when people ask me what I do, I have a tug-o-war game with the words inside my head. Do I take the honest approach, or do I lie and make up some marvellous story about what I do with my life?

The question what did you get up to today? is the one that stumps me the most. It's a trick question. How do you tell someone that you just watched trashy tv all day without looking and feeling like a total loser?

Living in pain every single minute of every single day is demoralising. It's humiliating to hear but you look so well and it's hard to earn respect in society when you aren't able to contribute like the common person can.

When I've admitted to suffering from arthritis, I am greeted with "you can't have that, you're not old enough". This makes me feel like a loser.

When I've confessed that I grapple with chronic fatigue syndrome and fibromyalgia I am met with judgemental, condemning-assumption -making-leering looks.

You can hear the words in their head: she doesn't look tired, she made it to this event.

It's written all over their face.

Too often I am told but everyone gets tired. My condition is belittled and this only makes me feel like a loser. If everyone was as fatigued as me, the world would surely be falling apart.

In one conversation I thought it best to take the honest approach. I feel like a loser when I make things up about my life that just aren't true. I hate the pressure of feeling like I have to babble some cool crap. I hate lying to people. 

So when I was asked "so what do you do with yourself?" I came out and said, "well at the moment I don't work because I live with chronic illness".

No hiding, no making up stories. I didn't go into detail but it was honest, to the point and out in the open.

Worst mistake.


The person glared at me and let out an overly expressive ohhhhhhhh, and turned to the person next to them and started a converstaion.

I felt like a loser.I felt worthless.

I felt that they didn't want to associate with me because I'm a sick person. I felt judged because I didn't work. I felt discriminated against.

And I never want to feel like that again.

Because of this I'm hesitant about being publicly open about my health in person. I've always been careful about the issue of disclosure and I've acquired good discernment skills but apart from this blog, I don't talk about the impact of my illnesses on my life.

I've tried the telling and the not telling and I just can't win. I feel like a loser.

I feel socially inept. I feel like a social outcast, a misfit. Because of chronic pain I don't "fit in". Instead of attending parties and social gatherings I'm at home blogging instead because I'm simply too exhausted or bogged down by pain. This makes me feel like a loser.

Seeing all the check-ins on facebook makes me feel like a loser, the most exciting place I ever go is to the shops which is not very often and it is certainly not the best conversational topic.

I even feel like a loser in my own church. I can't get involved like I desire to. It's a struggle to get there while wrestling with symptoms but when I do I often feel left out of conversations because I've missed what's been happening.

My infrequent attendance means when I do show up I feel like a third wheel. Somebodies tag along. I feel like a nobody.

Being unable to hold down a job makes me feel like a loser. I feel so ashamed. My friends are all busy with study and work, loneliness leaves me feeling like a loser. I spend the majority of my time on my own because who wants to hang out with a sick loser like me?

Nearly chocking on the lump in my throat and feeling the tears start to sting my eyes, writing all my feelings and frustrations out has helped me to realise- who am I kidding?

I am freaking amazing. I am definitely not a loser. I am a person worth getting to know. So I'm going to pick myself up and start socialising again and make the most of the good days because they are few and far between.

Sitting at home and sulking is not a good use of the precious limited energy I have. I am far too talented and I am strong enough to rise above people's snark.

Chronic illness is a huge part of my life and it's not my fault and I certainly can't do a thing about it. While it doesn't define who I am, it's there and it affects my life daily but I should not have to apologise for it.

If people can't deal with that then that's there loss. They can kiss my Chronically Creative ass as far as I'm concerned.

They are the ones that are socially misguided. They are the real losers.

Article written by Emily Ruth
© chronicallycreative.net, 2011

(1) Coralie Wales- President of Chronic Pain Australia:


Hayley Williams Pawley said...

I really do think youre a saint for dealing with your chronic illnesses and still blogging and doing crafts.
It sucks that people don't understand that just because something's invisable doesn't mean it's not seriously impacting your life. I have struggled with that with my own anxiety disorder and like you often refrain from telling people because they don't understand that it's more than just a case of 'get over it' it's a chemical imbalance.
And in the case of people asking you what you do with yourself. Until recently I wasn't working and I ended up lying part of the time when people asked me what I did because the reactions I got when I told them I wasn't working were not nice. And you have a damn good reason not to be working!
Keep up the great work hun.
Hayley xo

kpintn said...

Believe me, I completely understand!
As a fellow fibro/chronic fatigue/connective tissue disease sufferer.........I knew what you were going to write about as soon as I saw the title of this post.
While sitting here waiting for my meds to "kick in"....I cannot type all I want to say.
I have finally gotton over having to apologize for sleeping in soooo late, cancelling activities with friends and family and letting the housework go.
I am very lucky to have such an understanding husband. He knows that asking me to put on my shoes and grab my purse to run out the door, that you may as well ask a wheelchair-bound person to jump up and run!.....even though I look perfectly able to.
He has simply started telling people to come and live with us for a few days and they will start to see what it is like for me day-to-day.
What I am trying to say is.....I get it!
I am impressed and amazed you are able to keep a blog with all that goes with it.............I have become the most unreliable and undependable person because of this "Invisible Disease"
Bless You!

Emily Ruth said...

Hayley- yeah I hate it when people treat it like it's just something you can "get over"... if only it were that simple! Thanks for the sweet comment lovely, you've made me feel less of a loser xox

kpintn- that is so great that you have such an understanding husband! What a blessing! Having people that make an effort to understand definitely helps make dealing with chronic pain a little easier.

"you may as well ask a weelchair bound person to jump and run"- LOL! I'm going to say that the next time someone expects something of me that I just can't do. It sure is frustrating looking perfectly capable... people don't get that you feel terrible every single day and that you have to make huge sacrifices because of it.
And it's tough because they often don't see the sacrifices we have to make daily.

I am so thankful to hear from people who "get it". I started this blog to connect with people who understand because apart from blogging, I don't have anyone in my life who "gets it". I'm pretty amazed that I'm able to keep a blog too! It's a real struggle some days as you know.

Thanks for taking the time out to leave me a comment, it made my day. X

phylor said...

What an honest,heart-felt and heart-full post.
I know how you feel about when folks ask what are you up to/doing -- and it feels that you have nothing to contribute to the conversation or folks don't want to hear about your health issues.
Remember: you are an artist, a crafter, a blogger, a baker, a writer, a researcher. Your blog has received notice as you mentioned on your facebook page. Tell them about your fantastic nail designs, your gorgeous cards, your insightful blogs.
You have a strong presence in the cyberverse; you can also have a presence in the real world when you are able.
One place to start would be a support group for chronics in the real world. That would be an environment where you would not be seen as less due to your health issues.
I now tell folks I'm involved with various groups on the internet (and I was a part-time moderator until I had to cut back on my computer time); write; do crafts, etc. Some folks have even said they are envious of my being able to "work" from home (I never indicate that I get any income from the cyberverse and my crafts, but they don't need to know that, lol)
Good luck; I totally understand the social anxiety: I was going to start a blog called "Musing of a Social Dyslextic." I was a shy, introvert, and since we moved houses every 1.5 years, always the new kid in school. Being short and chunky, I, too, was the last one picked when teams where chosen. I have no athletic abilities!
Battling the world with invisble diseases is tough; but during Invisible Illness Week this September, we can all remind folks that what's on the outside doesn't always mirror what's on the inside (both good and bad).


Blog Template by BloggerCandy.com