Would You Believe Me If I Answered Honestly When You Ask How I Am?

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People ask me how I’m doing fairly frequently. I appreciate this question, but I don’t think they’re prepared for my honest answer. They’re not expecting to hear a novel, and my chronic state of physical well-being is pretty complicated. My automatic response is usually short and positive. Good. I’m hanging in there! I’m all right. It’s all a lie. I’m terrible. I’m barely making it. I’m hanging by a thread.

If I were to honestly answer this question, I would likely take you by surprise. If I told you that most days my every move is a struggle, would you even believe me? If I told you my legs shake when I try to stand for a few minutes and that my upper arms are sore and tender from doing nothing, where would the conversation go next? Would you ask me more and genuinely want to know? Or would you feel uncomfortable and not know what to say? I would probably feel uncomfortable too. That’s why I lie.

If I were honest with you about how my body feels when I wake up in the morning, you would likely think it’s not possible to feel so battered every single day. And if I told you just how many activities I can’t partake in because I am too weak to stand, you would likely feel pity for me. And your pity becomes my self-pity, and that’s not good for either of us. And so I lie. Because society doesn’t understand chronic illness. There is no place for invisible disease in our fast moving world. It is not fully understood. It is not fully accepted. And it is not fully compatible with life in the 21st century.

I would like to be honest with you. I’m just not sure you’re ready for the truth. I’m not certain my story will sound plausible to you living in your healthy world. I fear being unbelievable, and, yet, at the same time I’m learning to not care as much what other people think. But for now, I’m stuck somewhere in the middle: trying to have my imperfect life with chronic illness fit into our world of perfection.

And so when you ask me how I’m doing, the words roll off my tongue. Maybe one day I’ll tell you the whole truth. My invisible illness has many colors and many personalities. And when the world is ready, I will paint the picture of chronic illness in its entirety for all to see.

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Thinkstock photo by Michael Blann

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So You’ve Been Diagnosed With a Chronic Illness

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If you’ve recently received a new chronic health diagnosis, you may be in the midst of a real swirl of emotions: shock, relief, numbness, anger, sadness and more.

Hiding under the covers may seem like a pretty good option right about now, right? Please know you’re not alone. I’ve been there, and I know it can be especially hard to navigate these first few days and weeks.

Here are a few thoughts to support you one step at a time:

You don’t have to have all the answers right now.

When it comes to receiving a new diagnosis, you may feel intense pressure to begin taking action right away. There may be an urge to research treatment options and find out every last thing there is to know about this mysterious disease. That’s totally natural! Luckily, there are medical practitioners out there whose entire careers are dedicated to supporting people in your position.

Most people don’t have all the answers this early in the game. And while there isn’t a right or wrong way to act in the days and weeks after your diagnosis, know this: you’re allowed to take some time just to be.

Thoughts may be moving a mile a minute right now, so it’s important to create moments of rest and ease amidst what can feel like internal chaos. Whether it’s deciding to take a walk to slow down and soak up the natural world, staring at a wall for a while (seriously, you get to do this), or lounging on your couch watching Netflix for an hour or two, it’s OK — and even crucial — to give yourself breaks from the intensity.

You deserve support.

We weren’t meant to do this life thing alone. Call, text and meet up with the people you care about. Talk to them about what you’re going through. Ask for their opinions (if you want them). Invite them to attend medical appointments with you. Even if you don’t feel the necessity of companionship right now, it helps to be proactive about reaching out for support early in the game. Make time to laugh, cry, commiserate, watch a movie, and even sit quietly with your favorite people. You may find this huge challenge is a bit sweeter with them by your side.

You’re the CEO of your decision-making process.

Just like the day before your diagnosis, you’re still in charge of your life decisions. Having a chronic illness doesn’t change that.

Family, friends, partners and medical staff will likely have suggestions for what you should do next. While I recommend paying close attention to what your doctors prescribe, it’s important that you know each decision about your body is ultimately up to you.

Your emotions (and your loved ones’ emotions) may be running high. This can add extra pressure to make a quick decision that may not be in alignment with what you actually want. Whether you choose to seek a second opinion, do more research on your own or hold off on a painful procedure, you’re allowed to call the shots or ask for more time to decide.

Tough and beautiful experiences lie ahead.

Yes, living with a chronic illness has its challenges; yet in my experience, there are some good and even amazing things that can come from having them. Through it all, you may discover the power of your own resilience, build new friendships with people who really get what it’s like to have the same diagnosis, or develop an even more excellent sense of humor.

And if it’s hard to believe there’s a silver lining in this moment, let me hold that hope for you.

A few days after I was first diagnosed with multiple sclerosis, I received these sage words in an email from Jerie Jacobs, a new “chronic illness buddy,” that turned out to be very true for me in the years to come:

Your life will change in some ways, it’s inevitable. But some of those changes will be glorious. It truly is an exquisite journey. You will find depths of strength and power and patience in yourself that you never knew you had. And joy and compassion. You’re standing at the foot of a bright mountain. The climb will be hard, but the views will take your breath away.

Are you at the beginning of your chronic illness journey? If you’d like the support of a caring therapist on your side, let’s connect; you deserve it.

Follow this journey on Lauren Selfridge Psychotherapy.

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Image via Thinkstock

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The One Thing People With Invisible Illnesses Want

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I am invisible.

Well, I’m not actually invisible, but part of me is.

It’s the part of me that really doesn’t want me to succeed or to do well. The part that hates seeing me have a good day.

And I say it’s invisible because you can’t see it. You can’t see me struggle. Granted, some days I may take a long time to walk up the stairs or my mood is down, but you probably won’t know why.

This is the same for many other people in the world. They have the same feeling every day. 

According to the CDC, “about half of all adults — 117 million people — had one or more chronic health conditions” in the U.S. as of 2012. Disabled World says around 10 percent of the population (650 million people) “have a disability.” Unfortunately, quite a few of these are invisible.

And the problem is people don’t understand something they can’t see. If people can’t see a problem, then it clearly doesn’t exist.

I know so many people who live with invisible problems that you’ll never know about. You’ll never know about them until you know that person. That’s why I’m taking the stance that you should never judge someone by what you can’t see, and you should cut people slack.

People, it’s 2017 for goodness sake. There’s no room for anymore hate than there already is in this world.

Maybe your friend says she’s tired, or your other friend says he isn’t feeling too well. The way to deal with that is to give someone a break. Even if they’re “normal,” everyone needs to step back once in a while. After all, we’re all only human. (Insert Rag’n’Bone Man’s “Human” here. Sorry, I couldn’t resist!)

There’s a long list of what is considered an invisible disability — a condition that impacts you on a long-term basis or will probably impact you for life — including depression, anxiety, Ehlers-Danlos Syndromediabetesepilepsy, chronic fatigue syndrome, joint hypermobility syndrome, chronic pain, endometriosis, autism and asthma. The list can go on and on.

There are so many people who are invisible warriors, and you probably don’t even know it. Maybe, you’re one of us. If that’s the case, I want to congratulate you. Well done on whatever you’ve done today. I know it must have been hard.

I could go on and on about this issue, but I feel sad I have to even discuss it. I feel sad I have to put this on the internet.

I shouldn’t be shamed for sitting down after 10 minutes of standing because I look perfectly fine.

We shouldn’t be shamed for taking a disabled seat on a bus, taking longer to walk up the stairs or even having a disabled parking badge.

We battle through every day and just wait to see what the next day brings.

We don’t want your sympathy, and we don’t want you to feel sorry.

We don’t want you to worry if we tell you about our illness. We want you to treat us the same. However, we want you to acknowledge that we exist and our conditions exist.

And sometimes, we want you to understand and not judge us. That’s all we want.

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If You See Me Smiling Through the Pain

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Smiling isn’t the first thing that comes to mind when you’re in pain. It’s not the first thing I think to do. When I’m in pain, you will find my face in a discomforting, tight grimace with my forehead wrinkling — turning a slight shade of pink, eyes tightly closed seeing bursts of stars, and my mouth clamped shut and stretched wide causing my cheeks to take up real estate with my eyes. Maybe a tear or two, or a full-blown waterfall. No matter what type of pain I’m in, physical or emotional, it hurts. How can one smile through all of that? Honestly, I have no idea! But I try. I’m not always successful and I find myself spiraling into depression, despair, and self-pity. Thankfully, though, as the pain slowly subsides over a couple days, I find my joy again and I wonder why I allowed my pain to pull me so far down into darkness. Some days, though, even through the pain, I find myself with an achy smile.

Achy smiles, to me, are smiles we show to others when we are asked how we’re feeling and our response is close to an “I’m fine,” or “It’s a better day,” or “Good.” Sound familiar? Yeah, I do that, too. I have always been taught to be grateful for what we have regardless of what we don’t have. I have pretty much lived my life this way. Generally, I’m a very optimistic and positive person, bright and happy… until I found a level of pain that anchors me to the bottom of the ocean.

Most people who have known me since childhood know how sweet, caring, happy, and friendly I am. But over the last 15 or so years, that has slowly changed. I am still those things, but now I know pain. My body hurts most days, my mind hurts almost as much. I did a pretty good job about staying optimistic, telling myself there will be a cure for my illnesses and I’ll be back on my feet in no time! Then reality slapped me in the face with rare illnesses and hard-to-treat conditions. Stress, anxiety, sadness – all now parts of my life. Am I still happy? Yes! Sometimes those achy smiles really are smiles breaking through the pain. I am truly smiling even though I’m in pain, both physically and emotionally, because of what I have in my life that is still good. Because I smile doesn’t mean I’m not sad. And because I’m sad doesn’t meant I don’t smile.

I am becoming depressed. Enough to where other people can now see it. I love to write, I love technology (I was an adult computer science student and recently had to drop in my third semester of college due to my illnesses), I love to read, I love to hear about my teenager’s successes in school or in life, I’m excited about the new journey my husband is taking to better our future, and I’m enjoying my extended family as often as I can. I have so many great things about my life to reflect upon when I’m scared or sad. But no matter how many beautiful moments I create or participate in, the pain is still there. If it’s not physical in that moment, it’s emotional. Sneaky negative thoughts always seem to slither through the cracks ruining a beautiful moment for me, but on an emotional level. Here’s an example: I’m having a great time with my family at the movies, feeling great, no pain – bam! I start to think that I’m so happy that things are going well and I hope I don’t start to feel bad soon (that right there, that’s the negative thought creeping in). Sometimes I feel like my negative thoughts create my painful symptoms when I’m feeling well and I’ll start to feel achy maybe 30 minutes later. Was I meant to start showing symptoms or did my negative thinking spur them on?

The hardest part for me is remembering who I was compared to who I am. Two very different people. The woman I am today mourns the girl I was. I had big plans for my life and I was living them. I was successful and energetic. Today, I am still mourning the loss of my career, all of my plans to take over the tech world, because even though I am writing pretty well today, tomorrow I may not be able to spell “achy” or “smile.” I may not be able to type because my hands are cramping up and my muscles are spasming. I may not be able to look at the computer screen because the brightness burns my eyes. I may not be able to dress myself or feed myself because I cannot walk due to hemiparesis. I may not want to participate in life that day because I’m so down on myself, sad about what I’ve lost and can’t see the good in my life in that moment.

Unfortunately, you may be a warrior right next to me fully understanding what I’ve written. Because like me, you’re smiling through the pain, too. If you ever see me strolling down the street, quite possibly with a limp or using a wheelchair, with a polite, slightly achy smile upon my face, do me a favor – smile right back at me! Sometimes getting a smile in return will turn that achy grin into a genuine, heartfelt smile, deepening my dimples and crinkling my eyes and reminding me why I took a journey outside and way from my bed that day.

A smile does something more than words ever can for some magical reason. No, it may not erase the pain, but it can make you forget it for a couple seconds, and for some of us, that feels like a lifetime.

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3 Things Poker Pros Can Teach Us About Living With a Chronic Illness

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Let’s face the facts: Chronic illness robs you of a lot of energy, and it can feel like you’re always playing catch-up. There never seems to be enough moments when you feel well, and the time and energy you do have is spent on all things people tell you to have do to be a good human being. Enough already! I hear you shouting, “Stop the world, I want to get off!” So you have permission to take a moment today to read some good news because I have some for you. Here’s a secret I want to let you in on:

The majority of the people in this world live their lives on auto-pilot. They stay in their comfort zone and rarely move beyond it. Why? Because it’s easier, it’s comfy and it’s safe. They’re not taking an active role in their lives.

The truth is that most people on this planet are as lost, if not more lost, than you! The difference between them and you is your situation has made you acutely aware of the precious nature of every day and every moment. And that gives you something they don’t have. Your obstacles have put you in a better position than most to fully appreciate this life you’ve been gifted. 

When we’re dealt a difficult hand in life, it’s easy to compare our lives with people who have their full health. But life isn’t what we’re given, life is what we make of it. Life is the sum total of our actions and our ability to learn and apply what we learn (or not) for better or worse.

We usually think people who have been dealt the perfect hand have it made. But take it from a half-decent poker player, you can have the best hand at the table, but if you don’t know how to play the game or don’t realize you have a good hand, then you’re not going to play that hand to its full potential.

Watch professional poker players. They know how to use the cards that land. They get to know their situation, they read people, they work out the pro’s and con’s and probabilities, they take chances, they trust their gut and they hone their skills and practice until it becomes second nature.

So what can poker pros teach us about living with the cards we’re dealt that don’t seem so great at times:

1. See more than just your hand.

You don’t get to choose the cards, but you do get to choose what you do with that hand. You can take one look at what you’re dealt and fold, or you can pause for a moment to take in your surroundings, the people around you and assess how strong a position you’re in. Maybe test the waters with a call and see how it plays out or if your luck turns.

In life, you’re more than just the illness you’ve been dealt with. Just like there’s more than just the cards in play at the table, there are people, opportunities, chances and maybe just a little luck. But you’ll never know if you’re never in the game. Play with life a little and take a chance that there might be more for you than just the options you see in front of you right now.

2. Play the long game.

A good player knows when to fold and knows that it’s not about winning every hand. If you’re smart enough to get to heads up — the final two players — the odds are suddenly much more favorable than when there was a table full of opponents. In other words, you don’t have to do everything and you don’t have to do it all at once. Play to win by playing it smart and by choosing your battles one hand at a time. Pick the best hands and fold the opportunities that don’t light you up or make you feel good

3. All you need is a chip and a chair.

You have been given a chip and a chair in this life. It’s seat at the table and a chance to play. And you’ve been given another great advantage: Your life so far has taught you to be smart, observant, patient, and when that hand comes, you’ll know how to play it better than anyone else.

You may feel like the underdog sometimes, but every dog has its day and, my warrior friend, you are still very much in the game.

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