woman in a park

The One Thing People With Invisible Illnesses Want

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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woman with chin in hand smiling, drawing

If You See Me Smiling Through the Pain

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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Lead photo by Thinkstock Images

What People Who Use Feeding Tubes Wish Others Understood

three women playing poker

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

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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Lead photo by Thinkstock Images

sunset over the beach

Getting Through the Nights When It Hits Me That My Illness Won't Get Better

I sit on the cold bathroom floor writing this. I am left with only my computer as I throw up repeatedly while listening to “Flares” by The Script. Tonight, right now, it is all real. My pain is real, my illness is real, the loneliness consumes me. I sit here without real means of communication, becoming lost in my thoughts and the music until I finally throw up again, further clearing my body of nutrition and pain medication. I wonder to myself if this is the celiac disease, too much sun, POTS, or something Ehlers-Danlos-syndrome-related. Whatever it is, it is not pretty. My tears are staining my dress as I lie here sobbing, and the only thing I know how to do is write (and throw up).

The truth is that in this moment I feel hopeless. This is as close to rock bottom as I tend to get these days, but trust me it is scary. In this moment the pain, the nausea, and the fatigue are all-consuming. I think I will never achieve the goals I set for myself years ago, I will never get better, I will never live a normal life. On these nights it hits me. It hits me that my situation will never change, and I will never get better. On these nights I become hopeless and alone.

At a certain point during my pity party, though, my attitude changes. I realize that I cannot control what is. I cannot stop my conditions from making me miserable. What I can change is what could be; I can change my future. I find realistic goals for my future, I find a good support system, and I keep pushing on as an advocate for my conditions. On these nights I realize that there is so much beauty in the world. I see it on the nights when I drive down the basically empty highway. I see it when my plane touched down in Mexico. I see it when my little brother hugs me and tells me he loves me. There may not be beauty in my current situation, but there will always be beauty around me, and I have learned to accept that.

I cannot change what illness is standing right in front of me, but I can take in the beauty surrounding me despite my situation. These moments are what get me through my bad nights.

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Doctor listening to patients chest with stethoscope in his office at the hospital

5 Survival Tips for Dealing With Doctor's Appointments

I know you don’t want to read a guide about dealing with doctors and the million-and-one appointments you have to schedule, but alas, sometimes you just need a little advice. Know that you are not alone. We all hate dealing with doctor’s appointments, scheduling them, remembering them, and then of course, we all dread going. To keep it simple, here are some of the tips I use:

1. Organization Is Your Friend

I add all of my doctors’ information to my contact list, including name, specialty, address, phone number, and email address. I also add all of my appointments to my calendar app on my phone. When I do this, I usually include the name of the doctor, address, phone number, date, time, and email address, and I always set a reminder; sometimes, if I have a ton of appointments, I send additional email reminders to myself. This helps me keep my appointments in order; plus, I can easily reach my doctor at any point, because their information is stored on my phone and in the appointment slot.

2. All at Once

If I can, I try to schedule all of my appointment in one day. I hate how much time I have to spend in some of these appointments, so I try my hardest to get everything done quickly and efficiently.

3. Specialist First

When making appointments to see any specialist, I make sure I always take the first appointment available. This means that if they open at 6 a.m, I make sure to schedule my appointment at 6 a.m. In my opinion, it’s the best slot in the book. As long as my doctor arrives on time, I don’t have to wait; plus, I usually get a few extra minutes with my specialist to ask my laundry list of questions.

4. Therapy Last

I live by this rule. I always book the last appointment of the day to be my massage therapist or acupuncturist. I do this because once I am done with my therapy, I get to go home and reap the benefits by lying in my bed and relaxing. Trust me. It’s pretty amazing.

5. Go Digital

Prior to moving to Nigeria, I had Kaiser Permanente insurance and it was amazing because they have this online portal where I could email my doctor, request a call back, refill my meds and have them delivered to my home; basically, it was a dream come true. I highly recommend selecting a doctor that lets you email them. It is so efficient and easy to just send a quick message to your doctor with any question you might have. Also, if you can get your pharmacy to deliver medications to your home or work address, it will save you time and it will be one less reminder you have to add to your phone.

5. Nurse Practitioners or Physician Assistants Can Be Solid Options

When my issues are not urgent, I book appointments with the NP or the PA. It usually ensures that I get to speak to someone that same week and I don’t have to wait for an eternity for my doctor to have time to see me.

6. Photograph Everything

I take pictures of my medication bottles, referrals, and prescriptions. This helps me keep track of everything and I can always pull it up when I need to show one of my doctors. Simplicity at its finest!

OK, those are my tips. Do you have any additional tips you would recommend? Comment below and let me know. I am always looking for shortcuts to dealing with doctors.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

This post was originally published on The Curvy Spine.

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