Jul 21, 2012

The Truth Behind the Smile

I will state right up front that this is one of the hardest blog posts I have written and it's taking all the courage I can muster to write it. Here goes...

Most of my friends and readers know that I have been dealing with some hard-hitting health problems lately. In fact, it's been kind of a common theme for me throughout my life and something I've become used to dealing with, from a sensitive stomach as a kid, to endometriosis as a teen, to kidney stones in my 20's, a bad gallbladder in my early 30's, interstitial cystitis in my late 30's, a thyroid that's going bad as I turn 40 (which pretty much affects your entire body), and a heck of a lot more in between. Aside from the bad gallbladder (which I had removed) most of these issues are life-long and ones that I will always have to deal with.

My faith is the most important thing to me in my life and I believe everything happens for a reason. So I trust that there is a greater purpose to all of this and I am accepting of it. I still try to live life to the fullest despite these issues and I try so very hard to be a positive, happy person in all that I say and do, but it's not always easy and I'm not always successful at it.

I am also an open book, so I like to get it off my chest when things get overwhelming. And for the most part, I do. I think, however, a lot of people would be surprised at how much I do NOT say. I do not want to be a chronic complainer or a downer. I don't want to be negative. Most days, I like to forget to whatever extent possible that I am not 100% healthy.

Health complaints are so taboo to a lot of people and there is a bit of hesitation in talking about them because of that anyway. I lost a friend on Facebook over it...they thought I talked about it too much.

But I've also been wrongly judged based on all of the happy pictures I've posted of trips I've taken and events I've attended. I've actually gotten comments about "how much better I am doing" because I am smiling in a photo, when in actuality, it was a day that was a painful struggle for me to even get out of bed.

Some don't understand why I can be at a Coldplay concert, yet have seemed distant or unreachable, not knowing that one of the chief symptoms of the latest issue I'm dealing with (hypothyroidism) is depression and fatigue and that for every day that I actually get out to enjoy something, I spend several more days in bed trying to recover from it.

I am not writing this for sympathy. I don't feel sorry for myself so I don't want anyone else to feel sorry for me either. I don't even think I'm writing it for understanding for myself as much as I have come to realize that I need to speak out for every single person out there who may be in my shoes and may be hiding behind a smile like I often do, and may be facing judgement for venting or for not talking about it enough.

A good friend of mine who I got to see this past weekend said something to me that meant the world to me and gave me a lot of the courage I need to write this post. She thanked me for the things I have written about and the times that I have spoken up.

She said to me, "So many women are going through a lot of the problems that you are but don't say anything. But it really needs to be said so that we know we're not alone."

I do not think a happy medium really exists when it comes to discussing health issues, so to those of you who are reading this and are in a similar situation, I want to say to you...just simply be. Don't be afraid to speak up when you need to speak up. Don't be afraid to hide when you need to hide. As one of my favorite quotes say, and I cannot stress this strongly enough...

"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

And to the rest of you, I say this:

Another favorite quote and one that would make the world a much better place if we all followed it. (And believe me, I know it applies to me as well, as I've been guilty of not always following it myself.)

You really have no idea if the person you see smiling in this photo:

May actually be spending the majority of her days in bed looking like this:

...fighting all of the problems her thyroid is causing her - her 10th infection in as many months from an immune system that is pretty much shot, trying not to be too stressed because of heart and blood pressure issues, trying not to cry over the huge clumps of hair that have fallen out during the shower that took everything in her to take, reading as many inspirational quotes as she can get her hands on to fight the depression that no medication can cure because thyroid-related depression is quite different from regular depression, avoiding the scale so she doesn't have to face the 30+ pounds she has gained from a metabolism that has stopped doing its job, feeling guilty because she hasn't called her grandmother whom she loves desperately but can't bring herself out of the brain fog and depression long enough to pick up the phone...did I mention already how many parts of the body the thyroid affects? Yeah, pretty much everything.

The person who you see smiling at Disneyworld:

...may be hiding the wheelchair that she's sitting in because the exhaustion she is feeling is so severe, she can't walk by herself, which in turns leads to emotional/mental distress over the fact that she feels like a worthless burden. (Note: I need to point out that that is by no means the fault of my AWESOME husband who lovingly pushed me all over three parks without one complaint and spends every day of his life not only caring for me but telling me that I am loved, beautiful, wonderful, worthy and amazing when I most need to hear it!)

The person you see smiling in a picture at her friend's post-wedding party:

...may not tell you that she showed up two hours late and almost didn't make it at all because she spent most of the morning/early afternoon in her hotel so drained that she couldn't even take a shower and was in so much pain that even the strongest of medicines wasn't making much of a difference.

The person who posts a pretty picture of something in her house...

...may not be showing you the mess that surrounds it because she has been too tired to keep up with housework, which in turn leads to feelings of being a lazy failure and a bad mother/wife.

The person who jokingly posts a photo, pouting over the bruise from their last ER visit:

...may not be telling you how they had to be stuck 7 different times because their veins are so bad, only to have all of them blow and no IV be given as a result. That they had to be kept overnight for observation for organ damage because their blood pressure was at emergency, stage 3 levels.

You know what the last thing someone who is facing illness needs while going through all of this? Judgement.

You know what they do need? Love. Understanding. Compassion. Help.

At a time when someone is already at their lowest point, trying to convince themselves that they aren't a lazy, worthless, good-for-nothing failure, they don't need someone thinking those things about them too.

They need to be uplifted, not brought down. They need to be supported, not shamed. They need hope, not condemnation. They need you to be there for them, not expecting things from them or judging them for what they can't do because you can't understand what they're going through because you saw them looking happy and well in pictures on the Internet.

If someone hasn't called you for awhile, but you see them smiling in photos, please don't assume all is well and take it personally. Cut them some slack. Some of my best friends in life are the ones that I can go for months without talking to yet pick up right where we left off without judgement or hurt feelings as if no time had gone by at all.

Tonight, as I write this, I am so very grateful for the people in my life like that. People who have been loving, kind and supportive, even when they're not always aware of all that I'm going through. They are the people that make the fight easier rather than harder.

One other thing that I feel is important to say, even though I risk going off on another long tangent here: Several years ago, I went through another severe illness that brought me to my knees. A bad gallbladder. I couldn't eat. I lost 45 pounds and had to be hospitalized because my weight was dangerously low. I went through eight months of tests. Eight months of switching doctors, trying to get answers.

I was told by one doctor I was anorexic and would die by Christmas if I didn't eat (I wasn't and not being able to eat was by no means a choice). I was told by another that it must be depression since all of my tests were normal.

I spent so many days, weeks, months doubting myself and my own sanity. "If I just push myself harder," I thought, "maybe it would all go away." I thought maybe I was just lazy, not tired. That my 24/7 nausea and pain were all in my head, because there was no explanation thus far for how sick I was.

Eight months later, one simple test later that the other doctors failed to do (a HIDA scan), I found out that my instincts were right all along. My gallbladder was bad. After being told for eight months that it was fine. By the time it was removed, it was diseased, discolored and covered in adhesions. It took me a good, solid year to be able to eat again.

I went through something similar with my endometriosis. Several years of being told by three different doctors I didn't have it when I highly suspected I did. Years of pain and fatigue that I cannot even describe in words. Over a year of infertility before finally one doctor went in via surgery and found my insides riddled with endometriosis lesions. Endometriosis so severe it almost cost me my fertility, all because doctors didn't listen to me or believe me.

Me, on my honeymoon, when my latest health struggle first surfaced.

Fast forward to last November. I began to feel fatigue like I'd never felt before (even though I've dealt with it all my life due to endometriosis). I had a whole list of symptoms I couldn't explain and went to the doctor, only to have my thyroid test come back bad.

I have had five more follow-up thyroid tests since then. 2 were normal. 4 out of the 6 total tests were not. But the doctor I am stuck with right now (because the doctor that everyone I know has recommended has no openings until September) won't treat me because of the 2 normal tests. Why? From his own mouth...because he doesn't want to be sued if I have bad side effects from the thyroid treatment.

So, since November, I have had to continue dealing with unimaginable fatigue, weight gain, irregular cycles, hair loss, depression, blood pressure swings, abnormal EKG's and possible heart-related problems, endless UTI's....I could go on and on. Basically every system in the body is tied to the thyroid and until someone finally treats me for this problem, I am just going to have to suffer.

Do. You. Have. Any. Idea. How. Absolutely. Hard. That. Is. To. Have. To. Bear?

I am practicing patience. I am practicing faith. I am practicing trust.

Because that little voice that reared its ugly head a few years back when my gallbladder was bad has been trying since November to get inside of my psyche once again and convince me that I am lazy. Worthless. Crazy. That there is nothing wrong with me.

Deep down I know better. And I know those of you reading this who may be in a similar situation know better too. So I urge you to believe in yourself, trust your instincts, listen to your body. But most of all, never, ever give up.

And to the rest of you, the same advice applies. Please, I implore you...you really don't know what lies behind a person's smile. You don't know what they might really be going through. What kind of battle they may be facing. Battles with their health. Battles with doctors. Battles with themselves.You don't know how much power your words might hold on someone who is so fragile that they are ready to break.
It really cannot be said enough times.


Anonymous said...

See - this is what I don't understand, Dawn. What do people expect you to do? Lay in bed and not live your life? When I saw you a few months ago, I could tell something was up (although still gorgeous as always) but didn't want to pry. I like seeing the pictures and your travels because it shows you are happy.

People are strange sometimes. XOXO

metalmom said...

I know how hard it is for you. I tease about all the "lovey dovey" tweets and such, but it is very cute. I just had no idea what support was behind those tweets. I read this at a critical time myself. I have 2 little voices. One saying "you're lazy" and the other saying "get another test". Thank you. I will retest. Sister, you know that I 'forget' to call. but you're too tired to answer. LOL I hate that you have to wait so long for the new doctor, but I have faith that he will be the one with answers.

I love you always. XO

jan@twoscoopz said...

Oh hon, I knew you were sick but I had NO IDEA just how bad it was/is.
My heart goes out to you.
As for people who give you a hard time? Well you already said it in that awesome quote - they don't matter.
And I'm a firm believer in karma ;)

Chin up, babydoll. Just when you think you've used up the last little bit of your strength, you'll find just a little bit more. Promise.

Sugar Jones said...

Thanks for sharing and being so awesomely open. And thanks for the reminder of the battles others face in their private lives.

Ginny said...

Wow! There are no words to explain how much I can relate to this post. From having multiple chronic illnesses (one of them we have in common), to years of suffering from undiagnosed conditions, dealing with doctors who won't listen, aren't unqualified, or simply don't care enough to provide adequate treatment, the subsequent depression and anxiety associated with all of the above, and the pain of being judged by others who have no idea the magnitude of what you have to go through each day. All I can say is "thank you" for sharing. I needed to read this today. :)