Tuesday, May 8, 2012

What You Don't See

This is my current Facebook profile picture. 

May 2, 2012

This was my Facebook profile picture on March 22, 2012.

...and January 7, 2012

...and December 4, 2011

...and October 19, 2011.


This is me today. In fact, this is me almost every day.

Minus the make up,
minus the wonders of Adobe Photoshop,
any pretense.

May is lupus Awareness Month. If you didn't know me, or have lupus yourself, or actually know someone with lupus, you most likely would not even know this small piece of trivia. You might not even know what lupus is. Four years ago, before getting sick, I sure didn't.

Each day this month various lupus Facebook pages have been posting interesting and informative snippets of information to help bring awareness to people in regards to lupus. Most of the information I already know, but every now and then, something shows up that I was not aware of and I am reminded of how important these communities are to me. 

But, if I had to guess, the average person on Facebook probably does not "Like" these particular pages. In fact, I don't imagine my friends and family even do. So if one does not "Like" a particular page, then one does not receive the "informative snippets of information" that is sends out every day. Which got me thinking...

What do I want you to know? What do I want you to really know

In fact, what if I only had one thing I could write about today? What would it be? 

It would be this...

Lupus can be a very invisible illness. Because of the chronic nature of the disease, those who have lupus must learn how to manage with the illness on a daily basis, every day...seven days a week, 365 days a year...every single day of their life. Mothers continue to care for their children, fathers go to work, students go to school, people mow their lawns, cook their meals, shovel their walks, go to social events...all the while struggling with issues such as severe joint and muscle pain, nausea, vomiting, headaches, painful skin conditions, vision problems, kidney failure, cognitive difficulties... the list goes on. And most days, if you were to look at any one of these people you would have no idea the suffering they are enduring. 

I've been very fortunate in my life. I have a supportive family and a beautiful circle of friends that refuse NOT to know the real me. Not even Photoshop pulls the wool over their eyes, and I simply cannot imagine it any other way. But there are many out there who travel this journey completely alone. I hear stories every day of partners and spouses that are unable to fulfill their roles as caretakers. I hear stories of comments spoken by well meaning friends and acquaintances that absolutely break my heart. A simple "you don't look sick" can pierce like a knife when you're standing there suffering silently. Even the tone of it seems to imply you must not be sick then. Yet, "You look nice" is such a lovely comment to get and does nothing to imply any conclusions about whether or not I am sick.   

It took a lot for me to post that last picture. Not out of any sort of vanity, heaven knows I'm way beyond that whole concept! But because just like everyone else struggling with this disease every day of their life, I work really hard to....yep, you guessed it...not look sick.  And therein lies the crux. Like my mother always said, "You're damned if you do and damned if you don't!"

So what advice do I have to give? What snippet could I leave you with today that might actually make a difference? I think it would be this. And this pertains to anyone you meet in your life. 

We must always do our best to not make any assumptions. 

Because we just never know. The person standing before you could be struggling with depression, they could be victim of domestic violence or they could be suffering silently from a disease such as lupus. We just never know. Assuming anything because someone looks happy or dresses well or just happens to be out for the night is an assumption we must not make.  

Looking at our friends and loved ones through the eyes of compassion, trusting that their journey is exactly that - their journey and loving with our whole hearts is what we can do. 

I recently received a post on my Facebook wall that said this,

The average person tells 4 lies a day or 1460 a year; 

 a total of 87,600 by the age of 60. 
And the most common lie is...
I'm fine.

Who knows if this is true. I actually think the numbers should be much higher, especially if we take into consideration all the lies we tell ourselves! Either way, this does not make the job of caretaker or friend very easy. I will be the first to say that I could do much better at being honest and letting others know when I am sick. Just remember that those living with chronic illness are managing the best they can each day with something that will never go away. Actually admitting you don't feel well every time you don't feel well...well, even WE get tired of hearing about it!

If you would like more information on lupus and how you can help bring awareness to your community, please visit The Lupus Foundation of America.



Christine said...

I liked how you posted the photos leading up to the "big reveal"...LOL. I was thinking as I was scrolling down the page "what is she up to?"

The whole invisible illness thing of autoimmune disorders still frustrates me to no end at times.I also feel like I can't win; especially if I look "well" on the outside on a particular day.

I have started to not put forth so much pretense as well. not because I want to elicit people's sympathy but because I want people to see more of the real me. Previously, I would never let someone post a non-makeup'd/hair done photo of me; particularly when I am all bloated from steroids. Now I do. It is still not easy to do but I think quite necessary.

I think the last photo of you is my favorite. Because I see your spirit. I see you.

Theresa said...

You know, it's not nice to make people cry! Especially when you're not close enough to come give a hug!! Thank you, Chris. It's not easy for me either, but like you, I think it's necessary. For others some - but mostly for me. It's a hard balance, this business of how we feel versus what we show. Like I said, we're sick all the time, so either we talk about it all the time or we don't. If we don't, then there will be times when say one thing and feel another. That's a difficult pill to swallow when being honest with yourself and others is a priority.
Thanks, my friend. You made my heart full.

Jennifer said...

I loved this post. Thank you for showing us the real you. The other thing people don't see, behind our beautiful FB pictures, is the toll for doing those out and about things, even something as simple as attending church. Example, I was out all day Saturday and Sunday. I looked nice. I posted great pictures. Yesterday and today I am paying for it.

Thanks for sharing the honest truth of living with a chronic condition.

Theresa said...

Thank you, Jennifer, very much.
Yes, you are so right about the "day after"! And when we have those good days we want nothing more than to share them with our friends and family. It's so funny - I look at all my facebook pictures and I think - wow, I don't look sick...I wonder what people think? But what else would we do? Post pictures of ourselves curled up in a ball on our beds? Even the occasional time when I decided to share photo's of when I am getting my infusion I always worry about worrying people! But yet, all the while, longing to be honest. Like Chris said above, it's not that we want to elicit sympathy - it's because we desire to be real. Such a hard balance!!
Thank you so much for your comment. I always look forward to hearing from you!!

Jennifer said...

"We desire to be real" -- SO true for me, and also I am a person who documents. Sometimes I might put up a picture of a thermometer reflecting a low grade fever or my swollen fingers. It's not because I want sympathy or attention, it's just how I process my life. I document with photos, with words, and through all of that I process my life.

My best friend told me once that she's always careful never to assume anything from my appearance because I clean up nicely and I could make it very easy to forget I have a chronic illness and chronic pain.

Theresa said...

Sounds like the kind of friends I have!! They are the best kind!

I document as well - I think it's part of the artist in me that desires creative expression. Which is another reason why any type of holding back seems "unreal".

Ahhh....it feels good to know others understand!

Unknown said...

Theresa, I love this post and I love the real you (and the picture, too). :) I'm one of the lucky ones with a fabulous caregiver who is always supportive, always helping, always there for me. Thanks for sharing ... I'm going to share. Hugs and prayers, Mary

Mary Simpson said...

Above was my first comment on your blog --- didn't know it would show me as 'unknown.' I'm web challenged. :) I just previewed and it still says Unknown. Go figure. Mary Simpson

Michelle Sevigny said...

Whoa. Powerful. I admit, I do not know anything about Lupus and my life has not been touched by it, until I came across your blog. While I have enjoyed your blog posts because of your positive outlook on life, I have been enlightened on this other aspect of your life and for that, thank you. I greatly admire your honesty, especially in this post, and it has given me strength to finish off my own difficult blog post and not be afraid (ok, I'm still a little bit!) to hit that "publish" button. You are keeping it real and I am inspired. Best of health to you, Theresa.

Christine said...

Thank god for blogs like this where people understand the trials of living with a chronic illness. I have enjoyed the dialogue. :-)

A Smith said...


It's a long story how I stumbled onto your blog...so I'll skip it here, although I think you'd find it amusing.

I am a nurse. I deal with people from all walks of life and death. Including, fellow nurses who drive me crazy when they are quick to judge or categorize patients who act or dress differently than the 'norm', people who may or may not know the first thing about hygiene, some who cower, some who demand...

I am going to show them this particular entry on your blog. You are so right. It's what I have tried to say for years. None of us knows what is behind a face, how much pain or sadness is behind the most pristine smile. You have written and demonstrated it beautifully.

Thank you for your openness and honesty.
A. Smith RN

Tweedles -- that's me said...

I was drawn to you because of your honesty. Everyday you look pain in the eye, yet you continue to fight and go on. You admit the path you walk is steep and bumpy, and sometimes you feel too weak to crawl, and then I see your fight.
Thank you for posting the photos,, thank you for sharing this painful journey.
You share words that can help the rest of us- words with hope.
I watched my mother suffer with Lupus and I watched her listen to the dreaded words from aquaintances- saying " you look sooo good. They could not see the depression and pain in her.

If you love someone you feel their pain, and walk with them trying to help carry their burden.
But like you say- it can be invisable, and there are so many who are suffering internally in their mind.... and sometimes we pull away.
I now feel like I am talking in circles... but I need to tell you I understand what you are saying,,
I understand what you feel.....

abcsofra said...

You are such a giving person. You have given something that few would do....the real you. You have written and exposed your soul to us and for this I have always been grateful, moved, and inspired. And now you have revealed the "real you". I knew you were beautiful and your last picture proves it! Beautiful inside and out!

Theresa said...

I've been reading and re-reading the comments here for a few days. Trying to attach words to the tidal wave of emotion that fills my heart...and I just keep falling short.
We all hunger desperately for honesty - both from ourselves and from those that surround us. Yet, honesty is vulnerability...and feeling vulnerable is not always the best feeling. But the fact is, if we fail to risk, then we fail to love and be loved - it's as simple as that.
Your love heals me, and for this, I will gladly take the risk.
May you all be blessed as you have blessed me...beyond measure.