Evelyn Donato

The Pain of Watching Friends Drift Away After Becoming Chronically Ill

Since 2005, my full-time job has been managing my health. If it were my chosen career, I’d be considered an undeniable success story since I’ve risen up the ladder quite rapidly. But in this world, managing chronic illness and pain doesn’t win you any promotions or accolades. It’s an often isolating experience. I was born with a congenital birth defect of my pancreatic duct and a gene mutation which led to chronic pancreatitis and the eventual removal of my pancreas, gallbladder, spleen, duodenum, and part of my stomach. As a result, I have a myriad of health issues including diabetes, gastroparesis, GERD and bile reflux, small intestine bacterial overgrowth, difficulty digesting vitamins and minerals, and chronic pain. The trajectory of my illness has been riddled with ups and downs these past 15 years. It’s impossible not to draw corollaries between my health and my personal and work lives since they’re intricately woven together. Before I became ill, I worked full-time for a national non-profit organization, which meant I put in long hours and traveled on a regular basis. I was also doing freelance writing on the side and finishing up my undergraduate degree. I was newly remarried, my elderly mom was living with us, and we’d recently become foster parents to a 10-year-old girl. I was part of a group of close friends who spent a lot of time together – going on vacations, celebrating holidays, watching Super Bowl games, hanging out on the weekends. One couple even acted as godparents to my two kids while they were growing up. But, like so many who live with chronic illness and pain, my world became smaller as my disease progressed. It’s hard for those who are healthy to wrap their mind around what we go through on a daily basis. And when the illness is “invisible,” it’s even harder. By the time I had my pancreas removed in a 10-hour surgery in 2011, most of my friends had moved on. Those who had once been in my inner circle didn’t come to see me in the hospital (granted it was more than 500 miles away) or call in the 18 days I was there. Once home, there were no check-in calls or texts asking how I was doing or if I needed anything. The silence was deafening. It took me several years to truly understand that what happened with my friends was not malicious or intentional. It was the unfortunate by-product of change. It was the natural shift that occurs when people are no longer moving in the same direction. Like a road that reaches a fork, I went left while they went right. Being chronically sick also helped me to better understand the nuances of friendship. Up until then, I believed that friends who socialized a great deal, who traveled together, enjoyed holidays together, and hung out together were by nature “close” friends. But once chronic illness entered the picture, the friendships were not deep enough to withstand the changes they brought to bear. S. Kelley Harrell says: “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.” As a culture, Americans do better with the finality of death. There are religious and cultural conventions for observing the passing of loved ones. People attend funerals or memorial events, send cards and flowers, make donations to the person’s favorite charity, and bring casseroles. There is usually enormous support for the first weeks and months after a death and often a more quiet acknowledgment among good friends for years afterward. But the same cannot be said about chronic illness where the “loss” isn’t final and the emotional agony is ongoing. There are no cards that acknowledge when an illness becomes a continual challenge unless, of course, it’s for a hospital stay or operation. There are no ceremonies for when that individual’s life is changed immeasurably. We simply have no rituals for the sustained grief that keeps on giving or the agony that becomes a way of life. Once I began having to routinely cancel plans; once I was no longer able to drink alcohol or share a meal; once I could no longer be as active as I had been when healthy, the natural consequence of these changes led to them continuing on without me. I became expendable because, after all, who wants to hang around someone who is always sick or in pain? As they drifted away, I felt an isolation and grief that was crushing. I blamed myself for losing friends who had been in my life for more than a decade. It didn’t make it easier knowing that most people pull away during times of crisis because of their own shortcomings and inability to handle the stress and limitations brought on by chronic illness and pain. Logically that made sense. Emotionally I was devastated, and watching my friends drift away was almost as painful as my illnesses. Fortunately, I’ve been blessed with a few long-term friends who have navigated my illness along with me. And there are those who have become friends since I became chronically ill. They don’t ask “Why?” They don’t wonder when I’ll be “cured” or “back to normal.” They are able to tolerate the unknown and sit with me in my grief and struggle, and celebrate with me in my joys. They were (and remain) my saviors.

Community Voices

I could use a break from...

<p>I could use a break from...</p>
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Community Voices

How I'm Changing My Mindset With Fibromyalgia

<p>How I'm Changing My Mindset With <a href="https://themighty.com/topic/fibromyalgia/?label=Fibromyalgia" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7f00553f33fe992ab1" data-name="Fibromyalgia" title="Fibromyalgia" target="_blank">Fibromyalgia</a></p>
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B.L. Acker

If 'Spoon Theory' Doesn't Work for You, Try the Alternative 'Arcade Theory'

In 2003, Christine Miserandino constructed the Spoon Theory to illustrate the limitations she faced living with lupus. According to her Spoon Theory, she begins each day with a finite number of spoons, each representing a percentage of the physical and mental energy she has for the day. Small tasks may take one spoon, larger tasks three or four. Once all the spoons are used up for the day, she is done. There are no more spoons, there is no more energy. The Spoon Theory has been widely embraced and adopted by the chronically ill community because it helps illustrate how difficult it can be to meter out our time and energy when it is such a finite resource. As much as I adore the theory, though, for me it didn’t paint a full picture of not only my personal limitations, but also how those limitations play out with my peers and in everyday life. I imagine it to be more like going to the arcade. All around me, there are kids with pockets full of change. How much I have to play with, though, varies by the day. On some rare days, I feel really lucky and I might have five dollars. While that might not seem like a lot to most people, for me it feels like a fortune. On other days, I only have a dollar or two. On rougher days, I might have nothing at all, meaning I either sit out and watch others from the sidelines or I stay home altogether. Every game costs something to play. There are many simple games that cost a quarter, and harder ones that might cost two. The best games are also the most costly. If I choose to take on a bigger game that costs four quarters, that might be the only game I get to do for the day. The kids who always have a lot of change are able to play a lot of games every day. They are more adept at playing these games because they’ve had a lot of practice. I struggle, however, with even some of the easier ones because I don’t play them as often or for as long. So what comes naturally to others is often a struggle for me. I often feel clumsy and inept in comparison. I sometimes even worry others will see my struggles as a joke because I know some people are cruel that way. Perhaps worse, they might pity me. I consider pity worse because I’m often proud of how well I manage to do despite my lack of quarters. I wish just once they knew how hard I try and would cheer me on, instead of laughing or feeling bad for me. I always try to do my best, but I’m always self-conscious about how my best will be perceived. Sometimes my energy runs out sooner than anticipated. I put in a quarter, hit start, make a silly misstep and lose almost immediately. Other times, I pop in my quarter and find myself doing better than imagined, playing longer than expected. But the fact is I never know how long my playtime will last until I pop the quarter in. I go in always hoping I’ll get to play long enough to make it to the end, but I brace myself for those times I barely get started before “GAME OVER” flashes on my screen. All the other kids at the arcade with pockets full of change never seem to understand why I can’t just take out more quarters and keep playing. It’s embarrassing to admit to them that I just don’t have it like that. I don’t have any extra money in my reserves. What I have is all that I have, and I feel lucky to have even that. So I take my time and pace myself. I take stock of the games at the arcade and I carefully pick the few I really want to focus on each day. I might choose one I haven’t done in a while that I’d like to get better at, or another that I really enjoy. I don’t rush through the games I choose because I know when my quarters are gone, I am done for the day. And sometimes, if I’m really lucky, I come across another kid who actually gets it and realizes why I’m not racing through the arcade playing every game in sight. They might suggest we each put a quarter in and work together in a two-player game, because a lot of monsters are easier to defeat with help. Those are honestly some of the best days, because not only do I not have to face those battles alone, but because I have someone at my side who truly seems to understand and wants to help us both succeed. I love going to the arcade. I love being a part of the world and being able to participate in life. But at the same time, it can be bittersweet because every day I go out with my small handful of quarters, I’m reminded of the fact that I’ll never have as many quarters as the rest of the kids. I try to remain positive and be grateful that I have any quarters at all, but it’s hard because it doesn’t feel fair. Why does everyone else seem to have so many, while I have to scrounge and fight to wrangle up the little I have each day? Beyond that, I dread the days I have to stay home because I don’t even have a single quarter to play, because those days I feel like I have no place in the arcade, or in the world itself. On the bright side, sometimes there are ways for me to get a few extra quarters. Seeing my doctors regularly, taking my medication, taking better care of myself through diet and exercise — these things are like doing chores around the house or odd jobs around the neighborhood. They might not feel particularly fun, and they take time away from the time I can be at the arcade doing other things, but keeping up on those chores and odd jobs will eventually pay off and I might find myself with a little more money, and energy, to spend. Even more importantly, I gain a sense of accomplishment, and can be proud of myself for following through with self-care. While the spoons and the quarters are both a finite amount, I feel like the similarities end there. My arcade theory acknowledges that even that finite number we begin with varies day to day, and that there is an unpredictability to how long our energy will last. It also acknowledges the shame and discomfort we often feel for being different, having less, and being able to do less. The arcade scenario resonates more with me because it also considers the judgment we face, the benefits of working with others, and the rewards of self-care. I feel it paints a more complete picture of the limitations you face when you are chronically ill. As hard as it is to function when you are chronically ill, it is harder still to get others to understand.  Whether a finite number of spoons, or quarters at the arcade, those with chronic illness understand all too well the daily limitations we face.  Hopefully, if we come up with enough different examples and explanations to illustrate our struggles, we can finally help others to understand as well.

Let's Bust These 5 Myths About Fibromyalgia

Fibromyalgia is an illness that seems to be surrounded by many myths. While this illness has been around for quite a while, there is still a lot that is unknown about it; however, as we learn more about fibromyalgia, the better we are able to debunk many of the myths surrounding it. The following are five common myths I have found that surround fibromyalgia, along with the truths behind them. I hope that learning the truth behind these myths will help you to understand more about your illness, or the illness that affects your loved one. 1) Myth: Fibromyalgia is a purely psychological illness. Fibromyalgia is characterized by widespread pain, tender points, poor quality of sleep, and fatigue. Fibromyalgia can lead to depression, and depression can lead to fibromyalgia, but it is not a purely psychological illness. Both depression and fibromyalgia are medical conditions, and each condition has its own set of symptoms. Unfortunately, fibromyalgia was once considered a purely psychological condition that only affected women, and it was even once considered “Women’s Hysteria.” This negatively affected how fibromyalgia has been viewed, which makes it easy for those who don’t know much about the illness to stereotype it. It is important to understand that while fibromyalgia does have psychological aspects, it is a complicated medical illness that needs to be viewed as such. 2) Myth: Fibromyalgia is fatal. While having certain conditions, such as lupus, can lead to acquiring fibromyalgia, it has not been found that fibromyalgia affects a person’s life expectancy. Having certain conditions in conjunction with fibromyalgia may lead to a lower life expectancy, but a lower life expectancy has not been linked solely to fibromyalgia. 3) Myth: Fibromyalgia mainly affects older individuals. Fibromyalgia is initially diagnosed primarily in individuals ages 35 to 45, but it can also affect children. Fibromyalgia is seen in individuals of all ages. 4) Myth: Fibromyalgia only affects women. While women are 10 times more likely than men to acquire fibromyalgia, the illness can affect men as well. It is not yet understood why women are more likely than men to develop fibromyalgia, but we cannot discount the fact that men also live with the illness and need a high level of medical care to manage their symptoms. 5) Myth: Fibromyalgia causes severe damage to the body. It has not been found that fibromyalgia causes deterioration in the body. However, it is true that fibromyalgia symptoms can worsen over time and cause a lower quality of life and a lower ability to function regarding daily tasks. The severity of symptoms can lead to a negative impact on an individual’s psychological and physical well-being, but no physical deterioration of the body has been observed. Fibromyalgia is a serious illness that affects an individual’s physical and psychological well-being. It affects women more than men, but men do still develop the illness. Certain illnesses are more likely to lead to fibromyalgia, such as depression and lupus, which can impact the severity of fibromyalgia symptoms and the gravity of the illness. Fibromyalgia can seriously impact an individual’s ability to thrive, and medical care and attention must be paid regularly to ensure that an individual’s symptoms are well-managed. There are so many myths and misunderstandings that exist about fibromyalgia, but the more we tell our stories and spread awareness of what the illness is like, the more we will be able to raise awareness for fibromyalgia and support those who live with it. I hope that debunking the above myths has helped to spread more awareness about the reality of fibromyalgia while helping those understand more about their illness, or the illness of their loved one.

Community Voices

#Fibromyalgia high heart rate

Do you find that when you have a flare up of pain that your heart rate goes higher? Been in a flare the past two weeks and my heart rate is considerably higher.

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Community Voices

High pain days

What do some of you do when those pain levels are at the (can I handle this?) For example me: the pain gets this bad but hey my pain always come down on the 10 +++++so chances are they will this time

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Community Voices

What's the hardest part about working out for your health?

<p>What's the hardest part about working out for your health?</p>
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Community Voices

#Fibromyalgia heat warnings

Does anyone else find they struggle alot more when the humidity and barometric pressure is high? I get all sorts of symptoms and then anxiety kicks in 😭

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Community Voices

I would like to ask how many of you have itching as part of the illness? Itching is the beginning of a flareup for me.

The itching is concentrated on the back of my head down my back both sides, particularly at the inside of my scapular bones., Down my buttocks and the back of my thighs. The itching then seems to make me feel ill inside my body. My body feels like it’s under attack. Anybody else have anything similar?

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