Young woman using cellphone outdoors.

Quite recently, and for the first time, I got to explain the “spoon theory” to someone. It was oddly funny to me. After all, the circles I now frequent in my little online universe are filled with references to “spoonies,” spoon crafts, spoon jewelry, spoon tattoos…

Actually, it turns out the story of the spoons can be a little hard to relate succinctly. It goes something like this: One day a woman with a chronic illness was eating in a diner with her friend. Her friend asked her what it was really like to live with a chronic illness, and, struggling to find someway to really get this right, the woman collected spoons from the other tables. She then walked her friend through a day, taking away spoons for each activity. The physical removal of a spoon helped her friend realize the real pain of the loss of “normal,” the endless and emotional calculations one who is sick has to make on a day-to-day basis, and the ever-present knowledge that you are sick – its own special isolating misery.

It’s a great analogy and it works especially well if there are real physical objects available. Like spoons.

I was on the phone. It was late. I was recovering from a procedure. The spoon theory is not that intuitive, I discovered. We don’t normally think spoons = energy (at least not outside the world of the chronically ill). We think soup.

Enter the battery theory, which instead compares being chronically ill to being a damaged rechargeable, well, battery. It only partially charges, and that’s all the energy you’ve got. Simple.

Of course, that explanation itself got quickly modified to my favorite, the cell phone theory. It’s similar to the battery theory, but with many more ways to elaborate. Basically, you own a cell phone with a bad battery. It doesn’t matter how long it charges – it’s never quite full. Honestly, it’s hard to predict how much juice you’re going to have when you grab it in the morning. Maybe it’s 83 percent. Maybe it’s only 39 percent. And that’s all you have, so all of a sudden Snapchat and Words With Friends is o-u-t. Maybe you put the phone in battery-saver mode and sacrifice some functionality in favor of longevity, or maybe you burn hard for two hours and are left at the end of the day with a busted radiator, in the rain, and no way to easily call for a tow.

Perhaps you could bring along chargers, but then you’re always hunting for that free outlet at the back of a room. Now imagine it malfunctioning, in and out of airplane mode. The phone is physically in one piece and all the apps are there, but they can’t function. Or how about the stupid thing sometimes just crashes? Boom, black screen, and now it has to reboot. Maybe some wires are loose, so the display flickers and doesn’t adjust properly to changes in light. Possibly some of the software is glitchy, so it can’t process texts or answer a call unless you first open the calculator app. What if you picked up a virus or key logger, and some of that energy is now being eaten by a malignant thing that destroys your phone’s operating system and steals your identity?

Hopefully you can see how easy it is to not only explain the lack of energy, but to tailor it a lot of different conditions. Accessibility aids might be that charging cable. Dysautonomia could be the abrupt crashes or glitchy software. It seems all too easy to match cancers and autoimmune disorders to computer viruses and airplane mode. It’s relatable, too: Many people have fought with a piece of tech that has suddenly stopped working properly.

There are always those people who insist that, even though they’re not ill, they count spoons (or battery percentages). There’s only so many hours in a day and so much energy, after all. Since everyone has experienced a tech glitch – or running low on flatware – it’s sometimes difficult to make someone understand that this is different. This is constant, and there’s no replacing the phone.

It’s all right. You tried to explain. You did your part. When the weather’s cold, butterflies migrate. Leave, and use some of that valuable charge on a new app instead.

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Thinkstock photo by KristinaJovanovic

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We see them all the time. People doing photo shoots for their engagement, their new baby, graduation, puppies. Well, my friend is in a photography class and we did a chronic illness photo shoot. It was awesome. Here’s why more people should do them.

First, it’s like the old cliché: a picture is worth a thousand words. You may not ever be able to accurately describe to someone what it is like to live your life with chronic pain or chronic illness, and while pictures really only capture what is visible, it still captures the facial expressions to portray your discomfort and it is a great way to capture your physical hardships.

Second, it’s a great way to show your illness to the photographer (your friend, a family member, etc.). It gives them the chance to see the parts of your day that no one but you ever knows about. For me, we did it about getting up in the morning. A process that any spoonie will tell you takes time. We captured the different phases of sleep, alarm, prepping to actually get up, and a bit of the morning process — particularly taping up my joints in the morning. This is something that no one would ever know I did unless I told you about it because it is hidden under my clothing.

Third, it’s a good way to document your illness. Whether it’s for use at a doctor’s appointment, to tell a story, or just as a pastime, pictures are a great way to document the progress of your illness.

Last, but certainly not least, it is a lot of fun! You get to make the everyday activities, that are ordinarily difficult and unpleasant, a bit more interesting (and not in that semi-sarcastic ‘oh, I didn’t know my knee could pop like that’ kind of way!). In my shoot, the photographer was a friend and my brother and his girlfriend were there, too. It made it a lot of fun because we could laugh and use the more interesting aspects of my illness to entertain us, which is always a nice
change.

woman lying in bed
Sleeping
woman waking up
Alarm
woman preparing to get out of bed
Prepping for actually getting out of bed
woman getting out of bed
Moving to my steps to get out of my high dorm bed safely
woman wrapping joints in tape
Me prepping my taping to keep my joints steady
woman standing up from bed holding onto hand
I am finally getting out of bed, taped up, and holding my brother, Luciano’s, hand for support to keep me steady as I step down from my bed.

I would encourage anyone living with chronic illness to consider a “chronic illness photo shoot” as a way to help them express their struggles. Illness isn’t particularly glamorous and a photo shoot can capture the process of going from chronically ill to invisibly so. This has been the second class project that I have assisted friends with by being their model/subject and I love it every time. It gives me yet another way to spread the word of those who live their lives hiding a part of themselves.

10/10 would recommend.

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“Think positive!” ”Be a positive person!” “Look on the bright side, someone else has it worse!” “At least you don’t have (some other illness)!” “It’s not that bad!” If you’re a person with a chronic condition, you’ve invariably heard at least one of these comments, or some variation thereof. They’ve probably been repeated to you way more than once. Well-meaning people may have gifted you with pamphlets or books about positive thinking or shared memes with inspiration porn.

The question: is it helpful? For me, not so much. Ironically, there have been numerous times I’ve felt absolutely fine until I’ve been told to think positive. When people try to tell me how I should be feeling or thinking it leaves me frustrated and disappointed.

“Think positive!” has been thrown at me when I’ve tried to gently clarify that yes, I really am unable, for whatever reason, to go out or take part in some activities. I can think positive until the cows come home, but it won’t change facts. It’s cropped up when I’ve explained that some of my illnesses have the potential to progress to more serious conditions, give me unpleasant complications, and/or shorten my lifespan. Discussing possible outcomes is not expecting or asking for them, and being educated and informed on one’s illnesses and medications shouldn’t be considered morbid or negative. No, not every illness has a cure. Not every illness goes away. Some of them tag along with you for your entire journey on this planet. Some have documented complications, and one needs to be vigilant about monitoring for them. Facts, not fear. In this context, “think positive!” seems to be employed as an all-purpose incantation to bury anything that seems unpleasant, worrisome or out of step with the listener’s expectations.

It sometimes seems that unless you walk around with a perpetual smile like the Joker, never complain, shrug off all the logistical and financial challenges of being sick and declare to the world that by golly, you are positive!, you’re relegated to some mythical Team Negative, and that’s that. You’re told that you are fatalistic. Pessimistic. Looking at the glass half-empty. Not trying to look for hope. Not trying at all. Giving up. So on and so forth, ad nauseam. Being considered negative makes you a persona non grata – there are even memes on social media encouraging everyone to excise “negative people” from their lives or only associate with those who are unfailingly positive.

When, and why, did we start categorizing everyone with such broad, sweeping judgments about their emotions? What about those of us who take great joy in our good days and successes, cry and get angry when we need to do so, and try to accept all our emotions as part of the human condition? What if the glass is half-full or half-empty depending on your situation? That sort of objectivity doesn’t seem to have a place anywhere. You’re either Cheer Bear or Grumpy Bear, a Jedi or a Sith, and there’s no space for any middle ground.

If you ask someone about the “think positive” comments they make, they’ll likely say that they they’re only trying to offer encouragement and support. They might even be extremely hurt or confused as to why their suggestions of positive thinking elicit frustration or irritation. After all, they want their loved one to recover – or at least feel better – and they’re panning for nuggets of hope where they can be found. They also may be trying to soothe themselves by making the argument that things really aren’t as serious as their loved one claims, or that it’s a matter of perspective.

What happens when we’re constantly told to think positive? I think it has a chilling effect. We retreat into our shells and fabricate fiction for our loved ones. We smile and tell them we’re fine when we’re not; we don’t fill them in on what’s truly going on with us; and we certainly don’t let them know when we’re frightened or angry. We don’t trust them to be there for us in the ways we need. They’ve told us what they want to hear and we don’t want any more lectures, so we outwardly toe the line.

Our fake smiles might make other people feel better, but that’s about all they do. They won’t stop our illnesses from hurting us. My lymphocytes don’t particularly care how happy I am; they have their own agenda. As disability activist Stella Young once said, “No amount of smiling at a flight of stairs has ever made it turn into a ramp.”

That, friends, is the crux of it. You can tell us to think positive, but you should know that it’s not going to give us the support or empathy that might actually help us. We don’t need to be told how to think or feel on top of everything else. It’s up to you to decide how you want to interact with us, but whatever you choose will have lasting effects.

“I believe you. I accept what you’re saying. I might need more time to process this, but I hear you. I’m trying to understand your illness and how it’s affecting you. I love you. I’m here for you.” These are the words we need from our loved ones. Not “think positive.”

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Thinkstock photo by Yee kwan Lai


In his joint address to Congress, Donald Trump called upon Congress to repeal and replace Obamacare. “Obamacare is collapsing, and we must act decisively to protect all Americans,” Trump said. “Action is not a choice, it is a necessity.”

Trump took his speech as an opportunity to outline what he would like to see from future healthcare legislation including protections for people with pre-existing conditions, bringing down the “high-cost” of drugs and the ability to purchase health insurance across state lines. Trump also called for reforms that “expand choice, increase access, lower costs, and at the same time, provide better healthcare.”

“The way to make health insurance available to everyone is to lower the cost of health insurance, and that is what we will do,” Trump said. No further plans as to how Trump or Congress would lower the cost of insurance were provided.

On Friday, a draft of an Obamacare replacement plan was leaked, which would remove the subsidies and Medicaid expansion put in place by the Obama administration. The draft also detailed high-risk pools to protect people with pre-existing conditions, and limits on tax breaks for employer-sponsored health insurance plans.


The other night, I was watching “Doctor Strange” with my husband. I found myself feeling so incredibly sad when he first awakes after his accident with the realization that he will never be a surgeon again. I could relate so deeply as Doctor Strange struggled to accept that his accident would leave him forever disabled, unable to return to his beloved career. His career was his identity and his passion, yet his accident would not only keep him from that but from so many other normal parts of his life. He was left confused and frustrated, struggling to return to normal and unable to accept that this was impossible.

Then, I had a realization. It was because of his accident that he ended up finding his destiny. Yes, he lost his original dream, but he never would have become a superhero if he had been able to remain a surgeon. It was because of his accident that he went in search of something, hoping just to get back to his old life. Instead he found something so much better, a new purpose, a new path in life.

I realized, that much like Doctor Strange, I had struggled to accept my condition. Struggled to realize that my illness would forever change my life. Struggled to return to normal, unable to accept that everything happens for a reason. Sometimes it is those breaking points that cause us to change our paths. I may not become a superhero, but I believe my chronic illness has a purpose. Some days, I feel that being sick gives me a new appreciation for life. Other days, it shows me how wonderful the people around me are. But mostly, it has widened my perspective of the world.

Ultimately, I don’t know yet where my chronic illness will take me, but I know that every superhero has an origin story, and maybe this is just part of mine.

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Image courtesy of Doctor Strange Facebook


I dislike the term “invisible illness.” In fact I refuse to use it other than in this one story.

Why do I dislike this term? Because I believe it is too often used to excuse ignorance or prejudice. People may not be able to immediately tell by looking at me, but I am chronically ill. I may not be bleeding or bruised, you cannot see any physical symptoms, but my illness is not invisible. It is there. I deal with it every single day and it will always be there.

If you care to look close enough…

You can see it in my absence from events, dinners, catch ups with family and friends.

You can see it in the declined invitations.

You can see it in the unanswered text messages, because I have another migraine and can’t look at my phone.

You can see it in my inability to work normal hours.

You can see it in the enormous amount of effort it can take me to do tasks that others consider simple.

You can see it in the last-minute cancellations, when my pain levels are too high or I have no energy to leave the house.

You can see it in my inability to get through the day without a nap, because I am exhausted from the moment I wake up.

You can see it in the effort it takes me to hold a conversation or complete an assignment, when the mind fog takes over and my brain feels like a bowl of scrambled eggs.

You can see it in the way I clutch to things for support when standing, because I feel dizzy and like I might collapse.

You can see it in the way I over explain everything, because of the overwhelming sense of guilt I feel when I can’t do the things everyone else is doing.

You can see it when I wince or cry out in pain because of the random electric shocks going through my body or sharp stabbing pains that can make their presence known at any given time.

You can see it in my inability to breathe deeply, when the chest pain randomly shows up.

You can see it in the carefully planned outings and my endless lists.

You can see it in my eyes, because I am permanently exhausted.

You can see it in the way I walk, because my body feels like a lead balloon and everything hurts.

You can see it when I curl up on the couch or in bed as soon as I get home, because the pain is horrible and I’ve exceeded my limits for the day.

It is visible to all those people living with an illness. Those who have been told they look fine so they can’t be that sick. When people use the term “invisible” or question someone’s battles, it is hurtful and shows that they haven’t taken the time to truly consider what that person is living with. My illness has changed my life and it is something I deal with every moment of every day. Chronic illness affects people physically, mentally and emotionally and it is not invisible. It is very clear to those living with it and those that love them. So, if you care about someone with a disability, illness or disease please take the time to listen, understand and see their illness.

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Thinkstock photo by cindygoff

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