A tired young woman is having a cup of tea and is resting her head on a table

The Spoon Theory Gave People the Wrong Idea About My Illness

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Many people with disabilities that affect energy levels have adopted the Spoon Theory as their mantra. Indeed, when I first read it, the words struck a chord with me — so much so that I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life. 

Firstly, for those not in the know, I shall give a brief description. The Spoon Theory is a concept written by Christine Miserandino whereby energy is equated to spoons. Basically, as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons. 

This is very, very true. In basic terms, the Spoon Theory is an excellent way of describing life with a chronic condition. However, I find I just can’t embrace it. 

One reason is on a given day I have no clue how many spoons I will have that day. For me there is no set amount I wake up with. I cannot bank on having six or 12 or even one spoon. The theory states that going over your energy reserves on Monday will take away from Tuesday. This is certainly true. But I can have a completely restful day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure. 

Often I wake in a morning and think, “Yes! Today is a good day!” Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what happened. 

On top of this, the amount of energy activities take changes on a day-to-day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummeling me rather than water. My joints may feel stiff and rusty. Everything could take 10 times more energy. I cannot count on being able to do tomorrow what I managed today. 

Finally, there’s another complicating factor: Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you, you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me. 

So yes, the Spoon Theory is fantastic. But unfortunately, it gave people the wrong idea. They thought if I rested, I could then plan activities. If I worked my day so I didn’t have more than one thing happening, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverized by a Hulk-type monster. Either way, it’s a whole lot more complicated than simply rationing my Spoons. 

Though I’ve come to realize it doesn’t fit me, the Spoon Theory is still worth a read! 

Follow this journey on This Little Life of Mine.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? Check out our Submit a Story page for more about our submission guidelines.

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When I Feel Like Less Than the Woman I Was Before My Illness

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Once upon a time, there was a young woman who thrived. Her life was full of beauty and exploration and learning. She was in love with life and in love with living. Her moments were filled with good friends and hard work and creative expression and the joy of play. She was happy.

And while the beginning of this tale makes you think of a Disney princess story, the reality is more like the original, dark and frightening tales by the brothers Grimm. The woman in our story isn’t swept away by a prince, and we aren’t certain there will be a happy ending. We can hope for that, but we never want to expect that, because our heroine in this story is not a princess-to-be, but a woman who is chronically ill.

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Christy and her daughter Rayven before Christy became ill.

She has multiple co-occurring illnesses, and while she was once full of life, she is now weighed down by much.  

It is hard to live a full life when you suffer from illness of this kind. And while we often hear stories of the pain and inconvenience and fatigue and stigma of disability, we don’t often hear about one of the most difficult parts of the chronic illness story — the change required.

I rarely see articles or message boards that deal with the difficulty of change in chronic illness sufferers, but it is an important topic. The woman in my first paragraph — the happy, involved and active one — is the woman I once was, and I approached life with gusto. Now the only things I approach with gusto are ice packs, Netflix, pajamas and naps. While I might be excited to go on a date or have dinner with friends, I simultaneously dread the drain on my body and mind that such events will have. It is very difficult to find things that I am capable of, and even more difficult to be thrilled to participate since I know that the aftermath may be an increase in symptoms or days in bed recovering. And this isn’t something I mention so that I might gain your pity. I absolutely do not want pity. I mention these things because of the psychological affect these changes have on me and others like me.

Being less than you once were is very difficult. And my friends would assure me that I am not less valuable after that statement, and I would appreciate their loving support. But the point here is not that I think I am less valuable. I’m still a person, so I have the same value of any other person. My point is that I have changed in ways that make me not feel like myself anymore.  

I have a woman in my mind who commands respect and works hard and loves life and seizes opportunities and laughs like madness and throws all of her energies into whatever she is working on and offers her whole heart to friends and family and pours herself out for the good of others.  That is the woman in my mind, but not the woman in the mirror. I have changed. I have been forced toward those changes, and I do not like them. This isn’t the life that I want, and I am not the woman I wish to be. No matter how hard I fight to gain greater wellness, I still feel like less than I once was. And that is heartbreaking.

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Christy after she became ill.

I work at loving and being proud of the woman I am today, despite the many ways my society belittles, degrades and discounts who I am today and what I am able to accomplish. But that work is not easy, and it is constant. Because each time I look at my calendar, or look in the mirror, or look at my bank balance, I see something other than what I desire for my life. I never imagined that my self-image could be so shattered. I never imagined that I would need to change in so many significant ways. I never imagined being in the life I now live.

I spend much of my time in psychotherapy, mindfulness practice, yoga, and other practices to increase my awareness and my love of the body I am in today. It isn’t as I wish it were, but I am beginning to accept it as mine, and as good enough and worthy of my love, kindness and respect. I am starting to understand that I am a warrior, and that I work very hard. I am just fighting for new and different things. I may not change the world, but I can walk almost a mile, and I am losing weight, and I am sleeping better and feeling stronger than I have in two years. My goals have changed. I now fight for nine hours of sleep and improved flexibility and a sink without dirty dishes and increased flax consumption and getting to the pool once per week. And even these goals are not often met, but the fact that I keep working toward them is telling. It expresses that I am still me — still a woman who wants much and works hard and embraces life. And while life looks far different, and I may struggle with and continue to mourn the changes for some time, there is hope.  

I hope for increasing wellness. I hope for work. I hope for social engagements. I hope for understanding and knowledge and acceptance. I hope for a society that lets go of its unrealistic and false narratives and embraces equity and liberty for all — even the disabled and poor woman that I am now. I hope for cures. I hope for support on my journey, and fundraising donations, and kindness and care. And I hope to return as much as possible to the woman I was before I became sick, but I also hope for acceptance and self-compassion and love for the woman I am now.  

Change is difficult, and society doesn’t make it any easier to cope with the changes that chronic illness requires. But we can all change. Society can change. Attitudes can change. And at some point, we can all come to terms with invisible and chronic illness.  

And we can live happily ever after.

Follow this journey on Learning to Be Whole.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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How My 3-Year-Old Is Teaching Me to Accept My Chronic Illness

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Katy and her daughter smiling
Katy and her daughter.

Two weeks ago I finally gave in to my rheumatologist’s request and signed myself out of work on a temporary leave of absence. I have been fighting the leave for nearly a year. Doctors had told me repeatedly to take the leave of absence, consider my situation and give my body rest. I resisted again and again. I love my job, and I have given everything over for my career. I am the breadwinner for my family. I couldn’t take a leave of absence. The final straw was a monstrous flare that left me unable to sit up at my desk for more than 30 minutes without having to lie down in the next room. I was opening our building at 7 a.m. and needing to prop myself up by my elbows, on ice packs fifteen minutes later; it wasn’t good. I knew I couldn’t make it another week trying to hide the severity of my case. I booked an urgent appointment with my physician and left for the doctor thinking I would be back to my desk the next morning. By that afternoon I was being dropped off at home by a colleague with instructions to not come back to the office until I had taken a good, long break. And truth be told, I was heartbroken.

For the first time, I am being forced to face the reality of my disease and giving myself over to it — total surrender.

That afternoon I collapsed into my bed and cried for hours. In the midst of my grief, my 3-year-old climbed up beside me and laid her head down next to mine. She told me about her toe and how she hurt it climbing onto the couch. She talked about mosquitos and how her cousin is afraid of them, but she’s not, so it must mean she is a big girl. On and on she talked, about books, her dolls, her cousins — a 3-year-old stream of consciousness. Not knowing the depth of my sadness but recognizing her mom needed something in the way of cheering up, she stayed with me. When I needed to nap she laid down next to me, nose to nose and we fell asleep together. The next day was the same. At some point, on the third day she came into my room and woke me from a dazed sleep to remind me there was still a life to live.

Get up now, mom. The sun is shining. We need to play.”

And she was right.

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Katy’s daughter.

Slowly over the past few weeks, I find myself being less afraid of admitting my challenges. When I wear my compression sleeves, she plays dress up and decorates her arms. When I had double cortisone shots (one in each shoulder) I could barely sit up when I came home. My daughter promptly demanded two bandages to be placed on her shoulders, matching mine. She is my little healer. When I need compassion and a companion, when I can’t sit up, she stays beside me and colors or sorts her dolls in rows and dresses them. When I need a boost, she somehow senses it and nearly always demands, “Time to get up. Time to go outside, mom.” And she’s right. In the midst of this I have finally realized something imperative — my life is not in decline, it’s different.

I haven’t been able to accept this until I had this time at home, away from my desk, beside my daughter. These challenges, this change has felt to me like a downfall. In the past few years, as my health has faltered, I have barely used any of the “tools” I need. Being home and with her I see her acceptance of me as who I am today, and I wear the compression sleeves, use my voice-to-text translation systems, sleep through days at a time if I need to do so. She reminds me we will face this together. While the life I lead today is in stark contrast to the one I knew even a year ago, this 3-year-old girl is teaching me how the grace we give ourselves is the only way to survive in the face of fear and change. I’m still learning. For now, taking I’m taking one course at a time from my tiny professor. In her classroom there is only one requirement — total surrender.

Lead photo source: Thinkstock Images

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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17 Things People With Chronic Illness Wish Their Coworkers Knew

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Simply managing daily life with a chronic illness can feel like a full-time job — there’s a reason the term “professional patient” has grown popular. Add full- or part-time work on top of that, and life can get even more challenging.

Unfortunately, people may not fully grasp how difficult it is for their coworkers to come to work and complete their responsibilities while juggling pain, fatigue, doctor’s appointments and medications. So we asked our Mighty community what they wish their coworkers knew about their lives — hopefully encouraging anyone who has a chronically ill coworker to show more understanding and less judgment.

Here’s what they told us:

1. “[I wish they knew] how very much it hurts me just to be there. I wish they would also be more patient with me, when I need to take some time off. I’m not slacking, I’m recovering.”

2. “I wish they would see that I’m not asking anyone to pick up my slack, but a little compassion would go a long way.”

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3. “When I miss work, not only is it none of their business, but I would appreciate the snide comments be kept to themselves.”

4. “Although my body feels like it has already worked a full day by the time I start at 7 a.m., I always come in with a smile. I ask that you take a second to return the smile instead of passing judgment and discriminating.” 

5. “I just wish I had coworkers. That would mean I was lucky enough to have a job. I have been on disability for almost four years, and it really sucks! I lost my career due to my illnesses, and my master’s degree is going to waste. It is frustrating and can be humiliating at times.”

6. “When I say ‘I hurt too much to work a double shift today’ I’m not being selfish and/or using my rheumatoid arthritis as an excuse to get out of work. If I was physically able to, I would. I am not a wimp.”

7. “I wish my coworkers knew and understood the things I do to take care of myself are not optional. Poking my fingers, taking insulin and eating snacks all day can be a small inconvenience, but I try to do it quickly and discreetly without much disruption. If I skip doing these few small actions, things could quickly turn bad and they will be the ones to have to call 911.” 

8. “I’m disabled due to chronic illnesses and haven’t been able to work since 2007. I would tell coworkers I’m sorry they had to pick up my job responsibilities while I was sick and that I was grateful for all the support I received during my last year at the office. And that I miss both the job and my former co-workers very much.”

9. “I sleep fully dressed for work the next day, just so I might have the energy to get to work and make it through the day.”

10. “I would trade the constant pain, anxiety and depression to be able to happily work 50 hours again. The guilt from missing work increases stress, which increases pain. I miss working all the time. I sit and cry every time I have to call in [sick]. I fear being fired every time I do make it in. I do not wish any of this on anyone.” 

11. “I would like to go back in time to tell my past coworkers the real reason I missed so much work… I have fibromyalgia, lupus and chronic fatigue syndrome, and I never told a soul. Not even my boss.”

12. “I’m not lazy, unmotivated or unwilling, I’m sick.”

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13. “Not every day is the same for me. If I’m sick Monday and well Tuesday, that doesn’t mean I wanted a long weekend. That week, Monday was my bad day. I wish there was more flexibility — working part time helps, but my body isn’t reliable so I can’t rely on it to be in a good day every Wednesday each week.”

14. “When I make a mistake, it’s usually the illness causing it. I am on top of things as best as I can be so please be patient with me when my best isn’t good enough.” 

15. “My entire day revolves around conserving my energy to be here for four hours.” 

16. “I get sick of hearing myself say ‘I’m not feeling too good,’ so I keep it to myself. I will say I had a good weekend when in fact I didn’t because as usual at some point I was crying in pain. I will put on a happy face when inside I feel like I’m at rockbottom, just so you all don’t get sick of hearing me moan. If I say I can’t do something it’s because I can’t do it, not because I’m a shirker or a slacker. Trust me, there is nothing more crushing to me than feeling like I am letting the team down.” 

17. “I know I talk about my illness a lot, but it’s because it is constantly on my mind because it it such a huge part of my life. I’m not looking for sympathy, I’m just trying to verbalize the thoughts that are always there and hopefully help them understand my situation a little better.”

What do you wish your coworkers knew about your life with chronic illness? Let us know in the comments.

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When Loneliness and Isolation Are Side Effects of Chronic Illness

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Many people mention negatives, side effects and drawbacks of chronic illness. The one I find most often overlooked, both by professional literature and anecdotal evidence, is the severe isolation and loneliness that can come with being sick. We are treated as less than equals because of our disability in so many ways. We need social interaction just as much, if not more than able-bodied/neurotypical/healthy people.

So often I don’t get invited somewhere and hear, “We didn’t think you would be able to go or want to go, so we didn’t invite you.” I’m then left trying to explain, often in tears, that I do indeed want to go out with them, but am not always able to. I know that I, like most other chronic illness patients I’ve spoken to, would rather be invited and then have to decline, than not be invited at all. I know I feel so excluded and isolated when people don’t invite me.

The other part of isolation that occurs with a chronic illness is being made to brave the medical and social system alone. For many people, when they have a doctor’s appointment for something serious or they go to the emergency room, there are people who rush to be at their side. When you have a chronic illness, people may stop caring after a while and/or can’t be bothered to make the effort.

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Jessica in the epilepsy monitoring unit.

For me, this happened a few weeks ago. I was still at college and the residence director for my building saw me sitting in the lobby and was making sure I was all right. I had been extremely lightheaded (too much to stand) and unsteady on my feet. I laid down on the floor and told him what I was doing as I knew a seizure was coming on. He called an ambulance for me and I was transported to the hospital. I texted my mom from the emergency room and told her I was there. She just said, “OK, call me when you’re home.” My parents live 25 minutes from the hospital and it’s not as if the weather was bad. I was furious. There was no reason for me to lay in the ER for six hours alone just because my mom didn’t want to once again deal with it. I knew I was just dehydrated and had low blood pressure, but I still didn’t like being alone. No one wants to be made to go for tests/lab work alone, let alone be in the hospital alone. Unfortunately, the reality for so many of us is that we don’t have family or friends at all, or we simply don’t have anyone who cares. Often, those family and friends we do have think we are faking. I know I’ve heard it.

In short, think twice before excluding or ignoring friends and family with chronic illness. We need the love and attention just as much, if not more, than other people. Chronic illness by its nature is incredibly isolating. Don’t not invite us because we often cancel or say no, or because you think we can’t handle it. Let us be the judge of that.

Treat people with disabilities and illnesses the same way you would treat anyone else.

Follow this journey on Love and Spoons.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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5 Rookie Chronic Illness Mistakes You Don't Want to Learn the Hard Way

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Adjusting to a life with chronic illness is complicated and involves a lot of trial-and-error. There are things you need to learn for yourself, or things that will be unique to you (i.e., when you take your medications to minimize side effects). However, there are some bumps in the learning process that you should avoid all together. Here are a few rookie chronic illness mistakes you don’t want to learn the hard way. I’ve learned the hard way for you.

1. If you use a refillable pill case, make sure all the other compartments are closed before flipping it to get your pills for the day. I can’t stress this enough. Especially if your pills sit near a sink. Having six days worth of pills dump into the sink and start to dissolve is a nightmare of epic proportions. This happened to me recently — a colorful mound of dissolved pills went down the drain. I’m sure there’s a rat in a sewer somewhere feeling really good after ingesting that.

2. If you aren’t supposed to take pills on an empty stomach, don’t (if you can avoid it). Now, this one may vary for different people. I do know that some do better when they take their pills on an empty stomach. However, if you know you don’t, saying to yourself, “Eh, it’s just one time. I won’t end up in the fetal position on the bathroom floor puking my guts out,” is just straight-up a terrible decision. You may end up on the bathroom floor puking your guts out. Trust me. If you have to take pills while you’re away from home, I suggest having a small snack on hand.

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Alice at the Great Wall of China.

3. If you travel via airplane, make sure your medications and medical devices are in your carry-on bag. Never put your medications in your checked luggage. That’s just tempting fate to lose your bag, and then you’ll end up in China without your medications for three days during your first major trip without your parents. It may also result in you throwing up over the edge of the Great Wall of China, which will not be appreciated by the people working there. Honestly, they should just be happy I made it to the edge before that happened. This picture is from right before that happy moment.

 4. Always carry a medication list that includes drug name, dosage, when you take it, prescribing doctor, and the reason you’re taking it. Many of us with chronic illness have our dosages memorized, but you always want to have that list to double check. When prescriptions change regularly, it can be very easy to get names and dosages mixed up. It is also helpful to have a list on-hand in case you have a medical emergency and an ambulance is called. I have copies of my medication list in my wallet, on my refrigerator, on my phone, and in the crate that holds my medications and supplement bottles. Make sure a friend or family member also has one available. Also, if you are in at the ER or urgent care, make sure the physician on duty looks over your medication list before prescribing you anything.

 5. If you take medications that make you drowsy, set an extra alarm. Or 10. You can’t set too many alarms, although your significant other may disagree. I’m pretty sure that’s why my significant other goes to the gym in the mornings. My get-to-work-on-time strategy gets credit for his wicked racquetball abilities. You’re welcome, Ryan.

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.

Follow this journey on Funny Bones.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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