Instead of Saying 'I'm Fine,' I'm Trying to Be Honest About How I Feel

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“I’m fine.” That’s what we all say, isn’t it?

Isn’t that the only socially acceptable answer in the rush rush rush of productivity we’re all caught up in?

“I’m fine, I’m coping, I’m achieving, I’m holding it together.”

woman lying in the middle of the road with text reading 'i'm fine'

I’m fine means so much and so little. Yet I say it every day. At work, at play and in day-to-day life, I can plaster on a smile and say, “I’m fine, thanks, how about you?”

For me this overly utilized statement mostly means either “I’m not fine but I’ve gone to quite a lot of effort pretending I am so I’d like you to play along with me” or “I’m actually not fine at all and if you show me any kind of sympathy I will cry and I’m worried that possibly I’ll have forgotten how to stop.”

Does this sound familiar?

I’ve noticed friends tend to respond in one of three ways:

1. Accept that all is well and continue the conversation, asking about aspects of my life, telling me about their recent successes and frustrations. These conversations are great; they are important reminders that there is more to life than pain. Life is still out there, and my troubles now seem small and insignificant in the grand scheme of things. I feel normal. The problem with this is the pretense feels fake. I’m uncomfortable with how accomplished I’ve become at deception. It’s also tiring to maintain – who did I confide in and who did I smile and wave to?

2. Then there are those who notice that all is probably not fine, ask me again or question my response but continue to go along with me. This is great too. It reminds me that people care, and I’m perhaps not such a master of disguise. I like when we can pretend together…sometimes.

3. Then there are the brave souls who call me out on the lies and ask me what is wrong or just approach and hug, forcing me to accept their compassion. This is my favorite and yet most uncomfortable response. Someone I know who I don’t see often always embraces me regardless of the situation or how I look or behave. I feel disarmed and vulnerable, but loved and accepted. I want to both welcome it and run away.

I’m sure these experiences of pretending everything is OK for the fear of falling apart and being exposed as not winning at life isn’t unique to me, isn’t unique to lupus and isn’t unique to chronic illness.

So why not just tell the truth in the first place? It’s not a secret but it doesn’t make great school gate or coffee shop conversation. I don’t know how to say, “I’m not fine, because…” I feel bad for dumping that information on you when I know you’re also having more than enough of your own struggles. I worry you’ll judge me and tell me others are worse off, causing me to feel guilt guilt guilt!

Almost a year ago I started telling people I was in pain. People were sympathetic but after a while I felt I should have news of recovery to share. People told me I looked better so I thanked them and said what we both wanted to hear, “I’m fine.”

I’ve read a lot about how people with chronic pain/illness feel they are judged by others, that they’re somehow viewed as weak or malingering. I don’t feel judged by others, only by myself. I want to have that good news conversation. I want this to be temporary. Telling the truth somehow makes that seem less likely.

Specifically in regards to lupus, some days I feel good and start to think, “It’s gone!” Only to wake up the next morning to discover it’s returned and this time, some other body part hurts or some other function has temporarily developed its own agenda. So telling the truth becomes hard. “I feel terrible today, I can’t stand up long enough to cook for my children or stay awake to see my husband” becomes hard to believe when the next day I can go to work, dig my garden and walk my dog. Again, I feel like a fraud. So do I make out all is well or all is not well? How can it be both?

I also worry people will think of me differently, see me as weak or vulnerable or incapable. Now I realize this doesn’t do justice to the people I know. But I think whatever our circumstances, we all live with a little bit of fear that we somehow don’t measure up to expectations, yet somehow everyone else does.

When I started telling people about lupus, they all reacted in the exact same way: concern, sympathy, offers of help and then they went on treating me the same way they always had. And that’s the lesson right there. Tell the truth, be brave, write it down if you can’t say it out loud. People may surprise you – maybe that person will be you.

I’ll leave you with one of my all-time favorite quotes (i’m paraphrasing from memory):

“If only because it’s the easiest thing to remember, tell the truth.” – Toby Ziegler (The West Wing)

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When People Treat Me Differently After Finding Out I Have a Chronic Illness

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All our lives, we are labeled. From the obvious labels of mom, daughter, sister, father, husband, aunt, wife, male, female, to the not so obvious labels based on a person’s perception of you like lazy, attention seeker, snob, nerd, brown-noser, athlete, workaholic, the list goes on and on. Somehow, someway, we sometimes end up letting these labels either define us, or we base our self-worth on them. It shouldn’t be that way.

I’ve been thinking about labels a lot lately. Recently, I’ve been labeled “chronically ill” and now people treat me differently. Although I know most of them mean well, it’s been a hurtful and isolating experience for me to have this label added to my life and to see how it has affected a lot of the relationships with the people in my life. It seems to drown out all the other labels I possess that have a more positive connotation like wife, mom, teacher, sister, daughter, friend, and Jesus lover.

I’m an open book and always have been. It’s who I am. It’s how I believe God made me and how life has shaped me. “To thine own self be true” has always been my MO (mode of operation), and with my strong stubborn nature, there’s this “I’m not changing who I am for anyone” that comes into play.

After nine years of being sick and finally getting an answer, I made a personal decision to stick to who I am and I chose to announce to the world via social media my newest label, having the diagnosis of a chronic, invisible, illness called lupus. Ever since I made that announcement, everything has changed; at least, that is my perception. People no longer look at me the same way. To be fair, not all people, but a lot of people. They look at me with pity, which makes me stomach churn. They look at me like it’s all in my head or I’m just wanting attention. I’m not the kind of person that wants people to feel sorry for me. I never have been.

People no longer greet me the same way. Instead of, “Hey, what have you been up to?” now the greeting is always “How are you feeling?” and then comes the look of “I feel so sorry for you” that always follows. My least favorite is this one, “Are you feeling better now?” I have a chronic, lifelong illness that is incurable. No, I am not feeling better. It could be that I’m having a decent day, or a better than usual day, but it never leaves my mind that at any given moment my body may decide to betray me and take me down with any one of a laundry list of symptoms and ailments that I can’t even keep up with such as fatigue, pain, brain fog, dizzy spells, memory issues and migraines; the list goes on and on.

By no choice of my own, my life as I knew it changed and it will never be the same. I will spend my days trying to keep being me and doing the things I love, but hearing from a highly regarded expert in his field that you have lupus, which is a life-long, incurable disease that you will battle for the rest of your life, is not something you can just put out of your mind. My quality of life will never be what it was before I got sick. Period.

My favorite greeting (heavy on the sarcasm) is, “How are you feeling because you look great?!” This one is the one that makes me feel the absolute worst. As if I want to be sick. As if I’m faking it. As if I’m seeking attention. I do realize that ignorance is bliss and these well-intentioned people simply don’t have any understanding of what an invisible illness is or how it affects a person’s life. I can only imagine how wonderful it must be to not have to understand or experience what chronic, invisible, illness does to a human being, but it doesn’t give a person the right to make someone who is indeed very ill feel like they are absolutely crazy. Who would want to give up the perfectly healthy life they previously had that allowed them to do whatever they wanted at the drop of a hat without having to give it a single thought? Nobody! At least, not any chronically ill person I’ve ever met.

Sound pretty bitter, don’t I? I’m working on that. I start counseling this week. It’s been one year since my diagnosis and I’ve been going through the stages of grief, grief over the life I once had that I have no more. I want to accept my new life and learn how to flourish with these limitations. I want to keep being a positive influence on my students and find the energy to keep teaching. I want to find joy again and laugh with my son and my husband about anything and everything. I want to educate people on what it is like to have an incurable disease so that they can have an understanding of what that means and be able to offer compassion and support in an appropriate way. I want to advocate for more research, better treatment options, and more awareness of how many people are out there that are truly suffering but don’t feel they have the voice to tell anyone.

Yes, I’ve changed in a lot of ways, but I’m still the same person I was before. Please treat me the same. I don’t want this label. I didn’t seek it out or ask for it and I certainly don’t want it to be a hindrance to my relationships. I’m an extravert and I need people! Don’t worry; you can’t catch what I have. Please keep being my friend and treating me the way you did before I got my diagnosis. You can still ask me to go do things or to hang out. You can still talk to me about your problems; we all have them, and I want to be here for you, too. You can still count on me to be sarcastic and snarky, loud and obnoxious, dramatic and weird. And you can also look at me for the person that I am; a strong, powerful, warrior that will never be defined by a label. And may I suggest you don’t let yourself be defined by labels either?

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The Truth About Losing Hair Due to Illness at 24

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One of the things I have always been complimented on is my curly hair. It’s always been one of those things I have had a love/hate relationship with. Growing up, I can remember trying the L’Oreal detangled curly hair stuff. That stuff never worked and it would always sting my eyes. Tear free bull crap, L’Oreal!

I remember fighting with my thick curly hair every single morning. It was a nightmare. I hated it. Most mornings I cried over my hair because it wasn’t straight and flat like the other girls. I was always so jealous of the other girls at school who had their perfect hair in braids and ponytails. Meanwhile, mine was in a headband that looked like I had a mane around my head. It was bad. I won’t post a picture because it’ll turn into one of those mean memes. Trust me. It’s bad.

As odd as this may sound, as a little kid I remember praying that my hair would go straight and that I would wake up the next morning with Hilary Duff’s hairstyle. Ha! That clearly never happened.

In high school, my best friend taught me how to correctly straighten my hair (who knew that there was an art to it?! Not me!). From there, I slowly learned how to style my curly hair. I even got to the point where I was able to tame it… to a point. But for the record, to this day my curls have a mind of their own.

When I got home from my mission, I remember being at the beach with my family and noticing that my hair was starting to get thinner. I didn’t think twice about it. My hair had always been thick and curly — like insanely curly. As in the kind of curly that everyone comes up to you and says, “Can I touch your hair?” but before you can even answer they are already touching your hair (I still hate it when people do that to me. Don’t touch my hair unless you’re my mom, sister, boyfriend, or if I give you permission. End of story.).

Anyway, my hair started thinning while I was on my mission. At first, it was just a couple of clumps that would fall out every couple of months. Little did I know that was a sign of undifferentiated connective tissue disease/lupus.

Slowly, I started noticing that my hair was getting a lot longer but thinner. It was the weirdest thing. My hair was really long. In fact, that was the longest that I’ve ever had it. Then things slowly started changing.

My hair started to get stringy. It was really thinning out. Then I started pulling clumps of hair out. I started to get worried and Googled it. Dr. Google said I was dying. Great. Thanks, Google. That’s just what I wanted to hear. That night was the first time I ever cried over my hair as an adult. I never thought that I would be the kind of girl who cries over hair. I guess I was wrong. But on the flip side, I mean, it’s just hair! It’s not like I’m dying. It’s not like the world is going to end if I’m bald, right? …Right?!

But no matter how many times I tell myself that it’s going to be OK, no matter how many times I tell myself that I’m going to figure out something to get my thick head of hair back, I somehow always end up crying about it. Please, someone tell me I’m being dramatic over here, and that I just need to calm down!

As a 24-year-old you’re not supposed to be losing hair. You’re supposed to be starting a career, and thriving in your 20s. You shouldn’t be worrying about going bald in the next month. But, life has a funny way of throwing curve balls, doesn’t it?

Despite all of my insecurities with my lack of thick hair, I’m starting to learn how to manage it again. I’ve cut my hair, and learned how to layer (and I mean layer) on the hairspray to hide the random bald spots. Now, I’m trying to figure out how to grow my hair back. I’ve heard that coconut oil, and a few other treatments (someone told me something about egg white.. that sounds gross but I’m getting kind of desperate here!) that I’m going to try.

Anyway, I’m not sure what I’m going to do about my hair from here on out. Maybe I’ll go see another hairstylist and see if they can sprinkle some magic on my head. Or maybe I’ll ask my doctor about it again. I’m not sure. All I know is that right now I want to figure something out.

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Thinkstock photo by George Doyle

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When I Feel Invisible in My Wheelchair

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Whenever I go out somewhere with my husband or friends, I have to use either my scooter or a wheelchair to get around more than a few feet.  This is because I have lupus and rheumatoid arthritis; things hurt a lot, I get exhausted quickly etc. I’ve had my own wheelchair for six years now, since about a year after I was diagnosed. It’s extremely well traveled, having been to Florida with me twice and around Disney World several times!

We love the House of the Mouse; practically everywhere is flat and accessible.  And yes, that matters. I no longer visit a town nearby that used to be a favorite shopping destination, purely and simply because it has done nothing at all to help disabled people and seems to be completely disinterested in listening to ideas. So I’ve gone elsewhere. But not everything about being disabled in mid-life has options, and when you’re in a wheelchair being pushed by someone else there are some unexpected issues you may have to face.

The biggest thing I’ve noticed and never expected is that I seem to be invisible. People talk to my husband who’s pushing the chair and say things to him like, “Can she transfer?” or “Does she need any help?” Bless them for asking, but I’m right here. I can speak for myself! What is it about being in a wheelchair that makes many people assume I’m incapable of any kind of direct conversation?

I’ve had a think about this dispassionately, and I believe it’s all about fear. Anyone behaving “differently” is often looked at sideways and rushed past. Please don’t be afraid. I’m still me and I’m not invisible!

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Thinkstock photo by Ivonne W.

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The Moment I Took My Life With Lupus Back Into My Own Hands

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I remember the day I was diagnosed with lupus. And I remember the weeks that followed as I floated around in a haze of shock, not truly able to comprehend what was happening. I wasn’t in denial, but I hadn’t quite grasped what had occurred and that, although I had been discharged from hospital, my life had been altered; it would never be as I knew it.

I don’t know exactly when reality set in, but I remember going from a state of disbelief, to acceptance and then for a short while I found myself at resignation. It wasn’t that I gave up, or started to think my life was over because of lupus, but I started to see my illness as the biggest part of my life.

My greatest mistake was letting lupus take center stage while I tried to live my life around it, as if it was the starring actor in the movie that was my life. Do you know what it’s like to take a backseat role in your own life? For a moment there I did.

I can pinpoint the moment I took my life back into my own hands, as it was the day I contacted an old friend from school to start personal training. It took me weeks to get the courage just to send a simple message inquiring whether he had space for me, but it was that simple action that kick-started my ascent back to controlling my life.

I started going to the gym because I wanted power, not only in the physical sense, but mentally as well. I wanted to feel as if I was strong enough to beat my illness and to challenge it, just as it had challenged me.

My starting goal was merely to get fit and tone myself, and I had counted on struggling and having to consciously push myself. But I hadn’t counted on a resurgence in my confidence and the feeling that not only could I do this, but I could do anything.

In the past 12 months I have reinvented myself more than most people would in a lifetime. I have been so many different versions of myself: The girl who was broken, the girl diagnosed with lupus, the girl who was struggling, the girl who was coping.

But somewhere along the line I realized that I couldn’t stop at just “coping.” I couldn’t live the rest of my life just getting by with my condition; I needed more than that.

So, I unknowingly took myself on a journey — a journey of reevaluation, of empowerment, of confidence and power. Though I didn’t know it at the time of embarkation, I needed to prove something to myself.

I needed to prove that I am so much bigger, and so much more than my lupus.

There was a time, not long ago where I took a step back to realize I was becoming but a pawn in my own life. It was at this point I hit a fork in the road where there were two distinct options: Take another step back, sink into the background and give it all up, or shake it off, step up to the plate and get ready to fight for what’s rightfully mine.

There are make-or-break moments in life, and this was the most significant of my life to date. I can’t pretend it was easy. But, looking back, it’s funny how something that seemed so trivial at the time was the most important decision I ever made.

It wasn’t simply making the decision to start going to the gym that was so monumental, but deciding that I was so much more than what I was settling for in that moment.

It was deciding that I wasn’t born to be a pawn. I’m a queen. This is my game and so long as I can help it, you’ll play by my rules!

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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Why I’m Glad I Was Diagnosed With Lupus While I Was Single

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There were times right after my lupus diagnosis when I longed for a relationship that was more than platonic. There were times when I felt I needed someone to hear out my frustrations and wrap their arms around me in a way that was different than a family member or friend would do it.

Looking back on the past year, I can recall some truly terrible moments. Times when I cried not for one reason, but for so many that I couldn’t pinpoint what was hurting me the most. Anger, frustration and helplessness ran through me regularly, to the point where they affected me not only mentally, but physically as well, leaving me exhausted.

From where I’m standing now, I’m really glad and really proud I made it on my own. Going through the toughest part of my life alone meant that when I hit rock bottom — and I hit it hard — there was no one to congratulate but myself when I bounced up stronger than ever.

Although I received a never-ending river of support from incredible family members and friends, I know that ultimately I was the maker of my own destiny. And coming back harder, faster and better than ever was my choice, my doing, and mine alone.

Having to rebuild yourself over and over is something few people would understand. It’s not a normal part of life to scrap who you are and start again only days after you already redefined yourself. But that was my reality for months on end after being diagnosed with lupus.

I doubt anyone would have been strong enough to watch me have to change week after week as my illness ripped me apart and left me with a tear-stained face for the umpteenth time. Even if they had been able to stand up to it, I was afraid of another possibility. That after all I had gone through, all those transformations, I wouldn’t be the same person they loved.

When I reflect on the past 10 months, I know I am more confident and more certain than ever of who I am. I ran through walls and broke down barriers. I cried and sobbed, smiled, laughed and owned every emotion that came my way. I made peace with my demons, and learned to be content with my own company and exactly who I am.

It was the hardest period of my life, but I made it. It taught me that no matter what the hurricane, tsunami or earthquake that rocks me, I’ve done it once and can do it again.

It may sound odd to say, but I’m glad I went to war all by myself, but I am. Lupus shook me to the core. It beat me whenever and however it could. It tried to snuff out my spirit. But, being stronger, I refused to let it.

I’m proud of the person I’ve become, and I know I can do absolutely anything.

How do I know? I walked through hell with nothing but my shadow as company. And I made it out the other side stronger, and with a smile on my face.

Follow This Journey On Lupus News Today.

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