Let’s Talk About Bed (Spoonie Editition)

Let’s talk about bed – chronic illness style.

My bed and I have a love hate relationship, with mostly love and a little hate.

On Instagram, I was scrolling through my feed to see that the majority of my pictures are taken from my bed. My heart sank a little and I started to feel bad, guilty, embarrassed. I can’t pinpoint one emotion, but I think I felt like I should have a greater variety of photos. And don’t even get me started on those should statements. But I see so many people with beautiful pictures from hiking, biking, and even bright colored foods that look so good and delicious! Why is it that I can’t seem to get a picture to look that good??

But I digress.

My bed is where I spend the majority of my time on my days off and when I come home after school, appointments, internship, etc. And there is no right or wrong on social media. My account is my experience in this crazy world. It is what it is. My bed is a huge part of my life and where I do everything. From school work, to sleeping, to watching television, to blogging, to reading, to resting, to just laying. As someone who struggles with multiple chronic illnesses, I have come to find that a good bed is a must – an essential to living. Why? Simply because it is where I spend a lot of time when I am home. Sometimes I will lay in bed for hours half asleep, or feel like I am being weighted down and it takes all of the effort I have to get up. I love my bed, because it allows me to rest. It gives me comfort when I am not so comfortable. But there is also a small portion of me that hates it. I hate my bed at times because I almost feel like it is a confinement. Of course I don’t have to be in bed, but sometimes it feels like once I am in bed I cannot leave. Sometimes, the fatigue and exhaustion is so bad that it’s the only place I can and want to be. In this sense, it can be like a prison, because I want to be out in the world. I do not want to be sleeping for hours during the day, or feel stuck in bed all afternoon. I want to be able to get into bed at night sleepy, and wake up refreshed and ready to take on the entire day.

But that isn’t my reality – and that is okay. I am learning to embrace this life. I appreciate the little things, like riding my bike up and down my long driveway, sitting outside in the sun, reading a good book, and playing with my dog. I capture those moments, too. It may feel like those instances are blips in time compared to the amount of time I spend in bed, but it makes those moments that much more special and enjoyable.

And I am going to rock those photos from bed – because I have nothing to apologize for. My only hope with my IG account, and this little blog, is that it can bring hope and comfort to others. I share my story not so much to make it known where I have been and what I currently go through, but to let others know that they aren’t alone, and to connect with others who get it.

“Comparison is the thief of joy.”

I like to remember this quote, especially when it comes to social media. What we put out there is our own experience, and you cannot compare apples to oranges. How many likes you have, where you take your pictures, what your pictures look like – that does not really matter. In fact, it does not matter at all.

The point of this post? I don’t really know if there is one.

And yes, I am writing this from bed. 🙂

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Untethered

I wake up. It’s 9 am and I see the sun shining through my window and feel the warmth touching my face. It feels so nice to wake up by my internal clock, and not by an obnoxiously loud beeping alarm. I feel refreshed. Not too sleepy to where I cannot keep awake. So I comfortably and easily swing my legs over the side of my bed and stretch. My body elongates and I feel nothing but gratitude; for my wrinkles, curves, fat, muscles, skin, freckles, scars. My imperfections do not bother me. In fact, I embrace each and every one of them. I acknowledge that the parts of me that were once was hated and abused are perfect in their own way. I wrap my arms around myself giving my body a gentle hug. Because all of these years I know that’s what it always wanted. Its what it always needed.

I make a cup of coffee and watch the creamy almond milk turn my coffee to a delicious warm brown. I pour just the right amount of sugar. I eat my breakfast and plop onto the chair at my kitchen table, opening up my laptop. I enjoy scrolling through and reading all my favorite blogs. I soak up the beautiful and wise words of others. As I read, I take bits and pieces from each post, retaining the information at my own pace and in my own time.

I get ready for the day – brush my teeth and wash my face, and leave my hair as is. It is messy and curly and tangly, but I like it that way. Its my natural hair and I do not mind it. Actually, I kind of like it. I take one glance at myself in the mirror, and part from it until the evening. I don’t need it today.

I ride my bike through country and down by the lake, taking the winding trails for hours. I feel the wind blow through my hair. I know it’s got to be changing the way my hair looked from the morning, maybe even messing it up. But I do not care. I am too busy enjoying the moment. I feel alive. I feel free. I tilt my head up and squint at the sun, feeling the rays penetrate through my pores.

When I finally arrive back home, I take out a juicy red apple and open a fresh jar of creamy almond butter. It makes for the best snack, and I feel satisfied knowing I filled my body with some good nutrients.

I read a new book. A memoir, a collection of poetry, or the newest fiction – anything that can take me into a different realm or world for a while. It makes me think about life; the struggles, the beauty, love and loss. I laugh and cry – I feel each emotion as I venture through the pages, appreciating every word.

It is now 9 pm. I had my dinner. I spent some time with family and with my boyfriend. We laughed until tears were rolling down our cheeks. My boyfriend is so funny – we always have such a fun time together. He knows how to make me laugh, and because of him I learned that life is meant to be enjoyed. I now know that I must live my life to the fullest and embrace it all. Feelings are a part of life, not something to be feared.

I climb into my bed and feel my head on the cool pillow. Snuggled in warm blankets, I lay there and talk to God. I thank Him for such a beautiful day. I thank Him for giving me a second chance. I thank Him for all he has blessed me with, despite the things I have done. Tears begin to fill my eyes because I am overwhelmed with emotion; I feel His love pouring over me, and I am still. Peacefully, I close my eyes and fall asleep.

The Real Answer to the Question “Are You Feeling Better?” When Living With Chronic Illness

“Are you feeling better?”

A question that makes me cringe. It’s an awkward and uncomfortable question that, unfortunately, is asked frequently by friends and family members of those who are chronically ill.

I personally do not get upset with the people who ask me this. After all, if one does not experience chronic illness first hand, can we really expect them to understand? However, I was asked this question by classmates of mine for the first time, and I have to say, it was one of the most uncomfortable encounters I have had with my classmates to date.

And I thought and thought about this.

Why is that question so darn awkward to answer? Why does it make me stutter over my words, not knowing what to say, almost as if I were a deer in headlights?

Because I don’t want to tell them the truth. And the truth is, no I am not feeling any better. Sure, I may not be feeling as bad as I was that day I missed class, but I am never 100%. My battery is never fully charged. But that’s just how I live. In fact, I don’t even know if I really remember what normal feels like. This is my new normal. I live with this fatigue every single day. Little things make me tired. Doing nothing makes me even more tired. Sleeping does not cure the fatigue. In fact, it makes it that much harder to get out of bed. My heart rate jumps when I stand, I get dizzy, my legs feel like spaghetti noodles. I have learned to live with it, and I continue to learn how to best manage each day. And you wouldn’t guess that I struggle like this, because I show up with (most of the time) a smile on my face. I talk and engage in conversation. I laugh. I participate. But the effort it takes to just do these things is more than you know. I push myself.

Of course, this is too much to say in brief conversation. Does anyone really want to hear the truth anyway? Even if they did, the effort it takes to verbalize all of this is too great. So, I am writing it down. I am much more cohesive with my thoughts when I write than when I speak. Words seem to escape me when I try to talk, yet another symptom of my chronic illnesses.

So, to truthfully answer everyone’s questions that come my way about if I’m feeling any better, the answer will be no. The likelihood that I will actually say this is slim to none. You can expect a big old “yes” to come out of my mouth, but in case your wondering, that’s not accurate. It’s just easier because it uses less energy, and diffuses the awkwardness from the situation. I appreciate the thoughts and intentions behind this question, as I believe they are usually good ones. I just have not figured out how to live like a healthy person in a sick body, and I don’t know if I ever will.

 

An Open Letter to the Doctor Who Believed Me

Dear doctor,

I am so glad that I was able to get an appointment with you. I am not sure you are aware of the countless doctors I have been to that have not known what to do with me, or how to help (if they even believed me at all). I am not sure you are aware of the tears I have shed due to doctors thinking that my diagnosis is not valid. I have let other doctor’s beliefs and personal opinions effect me so deeply that I started questioning myself and my own sanity. I am not sure you know what that is like, but I do know that you can and want to help. I know that you are the right doctor for me, because you aren’t afraid of me and the complexities that come with my illnesses. You are not invalidating my experiences, and you are not brushing off my symptoms. You are not putting your two-sense in where it does not belong. You are not questioning and doubting my diagnosis. You are not giving up.

I have had many doctors dismiss me and my struggles. I have had many doctors make comments when they do not truly know or understand my illness. I have heard “that won’t really affect you unless you become pregnant.” I have also heard “that diagnosis is likely not valid. You probably received a false positive.” Then there is my personal favorite, “you aren’t severe enough. We can’t help you.”

Okay.

During my appointment, you looked me in the eye and held up the results from my muscle biopsy stating: “THIS is real. This is not in your head. You did not make this up. This stuff is real.” I don’t know if you realize just how grateful I was for that moment of genuine reassurance. Yes, the doctor who diagnosed me told me it was real, but when you have subsequent doctors telling you that you are fine, that it is no big deal, or that you are making it up, you start to believe it. At that moment, I believed you. I believed in the doctor who diagnosed me. I believed in myself. I heard what I needed to hear and said in the right way. Thank you for spending over an hour with me, explaining my illness in a way that I could understand. Because let’s face it, a lot of it has gone over my head. I know the very basics and that is about it. Thank you for taking the time to show me results that I never saw. Thank you for being thorough, and for embracing patients who have been seen and labeled as a challenge. We need more doctors who do just that.

Sincerely,

a hopeful patient

 

 

You Are Still Loveable

Valentine’s Day…it has never been my favorite holiday. Sure I like it for the chocolate and the little gifts I get (and so appreciate) from my loving parents. And I have to admit, it has always been more fun when I have been in a relationship. But Valentine’s Day does not have to be celebrated only if you are in a relationship with someone. I do want to say that yes, I am currently in a serious relationship that has been so good for me. It is a lot of give and take. Well, quite often I feel like it is a lot of taking on my end, and not enough giving. The reason I feel this way is because I suffer from anxiety and other mental illnesses, as well as chronic illnesses. And I get it, everyone has something. No one is perfect. We all have flaws. We all have struggles. But sometimes, I feel like there is A LOT of baggage that comes with me. And my chronic illnesses, well, they are not always easy to deal with. But honestly, the thing that I feel extra guilty about, the thing that has always pushed other people away in the past, is my mental illness. My eating disorder, my severe anxiety, my depression. I mean, who wants to deal with that?

Well, I finally found someone who will go to any length to make me smile, who will try his hardest when I am in an anxiety attack to find words of comfort. And I wouldn’t trade that for anything. I am so blessed.

But back to my main point: I want you to know that if you suffer from anxiety disorders, depression, or any other mental illness, DO NOT LOSE HOPE when it comes to relationships. I am not the easiest person to be in a relationship with half the time (just to put it plain and simple). But maybe, we are better at it then we think. When you find the right person, that person will love and accept every part of you. And you, in turn, will feel more comfortable being yourself and going to that person when you need a hand, hug, or shoulder to cry on. And sure, your anxiety might be annoying or aggravating at times to that person, because he/she is only human too! But that person will accept you with your disorders or perceived flaws. They will look at the whole you instead of that one part of you. They will not be annoyed by you (maybe by your anxious or depressive thoughts once in a while, but not by you). They will love you unconditionally and do what they can to help you or make you feel better. For the longest time, I thought I was unlovable. I thought I would never be in a solid, healthy relationship, never get married, never find true happiness. Slowly but surely, God and the universe is proving me wrong. We are all deserving of love. We are all deserving of a happy, healthy life. And my advice to all of my friends who spent this Valentine’s Day without a significant other or felt lonely, is to have patience with yourself. Shower yourself with some love because before anything, you need to love yourself. This does not mean that you have to fully love yourself 100% of the time to be in a relationship. That certainly is not the case. Self-love is an ongoing process. Something that we need to work at every day. It may come easier to some than it does to others. For me, it has not been an easy journey. But I am on the journey none the less, and I am learning to love and accept myself more and more each day. You do not NEED a significant other to celebrate Valentine’s Day. All you need is you, and of course, family and friends matter and mean everything too! But if you felt lonely this Valentine’s Day, and if you suffer from anxiety, depression, or other mental illnesses in particular, I hope you show yourself extra kindness and give yourself grace. Know that everything happens in its perfect timing, and you are loveable, and you are beautiful, and you are special, and you are deserving of good things. And if you don’t have anyone who can tell you that or show you, you are at least hearing it from me. But please, hear it from yourself, too. Happy late Valentine’s Day, friends. And if you didn’t do something nice for yourself, go buy yourself some chocolate :).

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When You Are Too Sick To Be Well, But Too Well To Be Sick

Some people may not consider me sick. Heck, half the time I don’t consider myself to be sick. Sure, I have all of these diagnoses; too many to count with mental and physical illness combined. But sometimes, that is just not enough. Often times, I feel like I am stuck in this limbo between being sick, and being normal.

Too sick to be well, but too well to be sick.

When I was first diagnosed, I was much worse off than I am now. My world came crashing down with my first and only hospital admission where I stayed for a week. Due to severe dehydration and Dysautonomia combined, I was really struggling. I struggled to walk, struggled just to make it 5 steps to my bathroom. I was shaking, dizzy, weak. When I was discharged, I was not much better than when I was admitted (minus being rehydrated). It was difficult getting around. I used a walker and a wheel chair much of the time. I spent the majority of my time in bed, sleeping or just laying there with heating pads. But then something happened. Slowly, I started regaining my strength. Maybe it was because I said to myself: “enough is enough!” I started pushing my body just a little harder. I signed up for classes, I slowly incorporated more activity into my life, I brought my puppy home who has been the biggest blessing. There was no treatment that kick started this improvement. It was slow and gradual, and for the life of me I can’t pinpoint how it happened. But isn’t that a defining feature of chronic illness? Disease symptoms that wax and wane in intensity throughout someone’s life?

I am not cured. I am not in perfect or peak health condition as I used to be. I still struggle after showers with tachycardia and low blood pressure. I still struggle to stand for more than 5-10 minutes at a time. I still have difficulty walking around the mall or grocery store, and often need my walker for these tasks. I still feel as though I could easily fall asleep during the day. I still get tired and fatigued. But at the same time, I am in school part time. I am a grad student. I go to my internship for 15 hours a week. I work part time from home teaching children English. I do all of these things, more than what many people can do with chronic illness. And sometimes, I feel as though I don’t belong in the spoonie community. That I am too far along, ahead of the game. I don’t go to doctors multiple times a week every week. I don’t have access to IV fluids. I don’t have many hospital admissions. I don’t have much testing left. I am in the stage where, yeah, we know what’s wrong, but I just have to keep doing what I’m doing.

“Keep plugging along.

Keep taking your medication.

Conserve your energy.

See you in three months.”

Sometimes, I don’t have all that much to talk about or update my spoonie friends on (particularly on IG) because I’m stagnant. Sure, I go to physical therapy and work on my dietary changes, but life really isn’t all that exciting right about now. Which, don’t get me wrong, is good. I am lucky that I am not worse! But sometimes, I feel like I have to work extra hard just to keep up with my counterparts and fellow classmates. I am constantly going, running, trying to keep up with people who do not have chronic illnesses. And it is so hard. It is a tough situation to be in. Because the truth is, I cannot do all that other people my age without chronic illness can do. I am still sick. I still am dealing with symptoms. But I’m not in the hospital. I’m not on my death bed. Heck, I’m not even in bed at all some days (minus the days I am free of obligations, lol). So honestly, I don’t know where I belong. I don’t know where I fit in. I don’t know where I should focus my energy, on my life with chronic illness, or my life without chronic illness. In so many ways, I am still dependent on other people in several areas of my life. I see my classmates living alone, supporting themselves, and I feel guilt over not being able to do so. I kick myself for being so far behind, because if I am well enough to do what other people my age are doing, why am I not there yet? Why do I feel as though I am running to keep up?

I know why.

Because I am sick. But not sick enough. I am well. But not well enough.

I am in limbo, bouncing around between being sick and being well, not sure of where I fit in.

But I know I am not the only one in this situation. And that is what I need to continue to remind myself. That, and giving myself grace.

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Book Review: Turtles All The Way Down

So – let me just start off by saying that I am not a huge book person. I love the idea of reading a good book, and I could spend hours in Barnes and Noble. BUT, the actual reading part and keeping me interested in the book I am reading is pretty tedious and trying. I wish I was the type of person that could dive into anything and everything, soaking up all of the beautiful words, immersing myself in the pages and filling my mind with information. That’s just not reality unfortunately. I have many books on my shelf that I have bought and haven’t read, or read but only part way through. And some of this is due to disinterest, while some is due to the fact that I am a grad student and have textbook reading that I need to focus on. There are a handful of books that really get me fired up and spark my interest – and Turtles All The Way Down, that’s one of them.

Turtles All The Way Down by John Green is a unique story line about a high school girl, Aza, and her best friend/partner in crime, Daisy, and their wild adventure they embark on to win a 100,000 dollar reward. When a local billionaire goes missing, this reward is put out in the open for whoever finds Russell Pickett. Russell Pickett’s son, Davis, was an old friend of Aza’s, and they reconnect in this story while beginning to really fall for one another.

This seems all well and good right? A perfect love story.

Not as one would think.

Aza tries hard to be a good friend, a good daughter, a good ‘more than friend’ to Davis. But she is trapped by the ever spiraling of her thoughts, and consumed with anxiety stemming from obsessive compulsive disorder. She can’t be the ‘normal’ friend, girlfriend, and daughter, despite how badly she wishes to and how hard she tries. In reading Turtles All The Way Down, readers get a glimpse into the mind of Aza Holmes; we can sympathize with her, and feel the pain and panic she endures on a daily basis. As someone who has been diagnosed with obsessive compulsive disorder, I can empathize with Aza. This story hit home in a variety of ways. No, Aza and I do not share the same obsessions/compulsions, but I understood that spiral. I understood that relentless anxiety, constant doubting, and needing to check. Even if you do not suffer from obsessive compulsive disorder, this book is a fantastic read. It is so much more than mental illness, which is only a piece to this beautiful, thought provoking book. It is about friendship, love, loss, pain, suffering, and family. It is about the complexity of life, and reading it forces you to look at life from different angles and multiple perspectives. Readers can relate to the bonds of friendship and the conflicts that may arise as well as experiences with falling in love for the first time. And if you are one of the many out there that feels imprisoned by your own thoughts, you will be able to relate to that, too.

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In sum – I highly recommend this book for anyone to read. I know it is currently popular among teens, but I am in my twenties and enjoyed every second of it. It is heart wrenching, funny, and can make you chuckle and fill you with emotion (likely not at the same time haha, but you get what I mean). Now, onto the next search of what I can read during my next break from school, and I think I already have some ideas. Stay tuned for more book reviews in the future!

Living Our Best Lives with Illness

Chronic illness. Two words that represent anything but fun and joy. Rather, those two words are the epitome of pain and suffering.

Those with chronic illnesses know that following a diagnosis, and even before one receives a diagnosis, life can be utter hell. People’s once happy, fun-filled, and busy lives gets turned upside down. Sometimes in the blink of an eye, other times it is a slow, gradual process. Both of which are equally as painful and devastating.

But – we, as chronic illness warriors have two choices.

  1. We can wallow in our pain and feel sorry for ourselves.  Or
  2. We can make the most of our situation and find ways in which we can feel a little better and live our lives to the fullest – WITH illness.

Now, I don’t mean for this to sound harsh. Believe me, I am fully aware that there are varying degrees of chronic illness, and some of us are in excruciating pain every day or bedbound. I was once house bound and spent most of my days in bed. It is not fun. It is crushing. You feel as though you are a sack of potatoes not able to do anything or contribute to society. You wonder, what is the point of my life? 

But I am here to tell you that it may not always be that way. In fact, it probably won’t always be that way. Many chronic illnesses wax and wane in severity. Different treatments, medications, IV fluids, homeopathic options, will allow you to eventually find something that works. Even if it helps just a little, there will be some improvements made at some point in your life. Maybe one day you will be able to get out of bed, leave the house, do some form of exercise, engage in physical therapy, or meet friends at a coffee shop.

This past weekend, I took a road trip with my boyfriend. We went to the mountains to go skiing. Last year was the first time I tried skiing at my local ski club in three years. I was only able to do a couple runs, and I was exhausted, but I was so proud and ecstatic with that accomplishment. My trip this past week was a blast. I was at the ski resort for a total of 4 hours. We had to make lots of stops along the hill, and go in to take a break, but I still had the best time and was satisfied with all I was able to do. I pushed my body no doubt, and of course I payed for it later that day and a few days after the fact. But I did it. I had fun. I enjoyed myself. And for the first time in a long time, I felt normal. Even walking around the town with my walker the day after skiing, I felt alive. Sure I had to use a walker and was the only one wandering the town with an assistive device, but because of that device, I was able to do what everyone else was doing.

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What I really want to get at here, is that we can still have fun. We can still enjoy life. We can make the most of this life and practice gratitude for all that we do have. Sometimes, you don’t always have to be grateful it isn’t worse. We are allowed to have bad days. Believe me, I have my fair share of them with chronic and mental illness. But it does help to remind myself of all my blessings, and that somewhere out there, just miles within my little radius, some people have it worse. There is so much suffering in this world. Every one of us struggles. Every one of us suffers. Every one of us experiences some sort of pain. But we don’t have to let our pain define us. Chronic illness friends: do everything in your power to lead the life you deserve. Try different treatments, work your muscles if you can, do things that YOU ENJOY. Take up knitting or crocheting, draw, paint, get out of the house when your feeling up to it, meet a friend, watch your favorite television shows, take a bubble bath, write, connect with others via social media. Live your best life, because it is so possible. We may not be able to do all we once did, but we can live life to our fullest despite our conditions, and with illness.

Getting My Head Out of The Sand

Some of you may know that I have an eating disorder. Or should I say, am in recovery from an eating disorder. Some of you may not have known. Well, now you all do. Cats officially outta the bag!

Now, I liked to think that for the past year or so I haven’t had an eating disorder. I have not really struggled with eating or counting calories. I can’t really exercise anyway so that’s out, and body image, well yes there are issues with that. But won’t there always be?

I have just been going through life taking challenges head on, and not really looking back. Yesterday, however, I was reminded that my eating disorder is still a part of me. That voice, though small, is still there. And when it wants to come back loud and rearing it’s ugly head, I cannot have my head in the sand pretending everything is just fine and that I will never relapse.

 

Let me just be clear about one thing: I do not plan on relapsing back into my eating disorder. Ever. But – I am not a magician, and I am not a psychic. In other words, I can’t do magic and I can’t see into the future. I HAVE an eating disorder. It may not always be active in my life, but that small ED voice is always going to be in the back of my mind. It’s whether or not I choose to listen. But even when/if I choose to listen to my ED, it is not as simple as “oh, there Claire goes choosing to listen to her eating disorder instead of choosing recovery.” No. It is way more complicated and complex than that. Eating disorder thoughts and behaviors are so engrained in me, and in others that suffer, that it’s not always just a matter of choice. These things can sneak up on you, life can sneak up on you. It’s a sickness that’s intent is to destroy and ultimately kill. It’s not so simple.

But, let me get back on track. Yesterday, I was reminded that I do still have an eating disorder. And that I have to be cautious, careful, and mindful of this fact. I was going skiing with my family for the first time this season, which, is a big deal due to my having chronic illnesses. I tried on my snow pants, and sure enough, they didn’t fit. I could not do them up. Immediately I felt ashamed and embarrassed, not to mention anxious over what snow pants I could find that WOULD fit me. Well, I tried my sister’s on and they fit. So those are the ones I wore. But I just could NOT stop thinking about how I couldn’t fit into my snow pants. It put me in this awful mood; I was upset, sad, anxious, and wanting to shed some pounds more than ever.

Well, fast forward. I ended up going skiing. I took five runs and had a great time. That’s when it hit me, and everything fell into perspective again. So…my snow pants didn’t fit me. Maybe, over the last year I have gained a few pounds. Maybe I am not a stick anymore. Maybe, I actually have a woman’s figure. Maybe my chronic illnesses cause weight fluctuations (even those without chronic illnesses experience weight fluctuations). But you know what? IT DOESN’T MATTER.

There you go, I said it.

It really does not matter. Your size doesn’t matter, your weight doesn’t matter, what does/doesn’t fit you does not really matter. The things in this life that DO matter: family, friends, love, health, happiness. If you are healthy, that is all you can ask for. So, maybe size and weight matters in some circumstances, because it can be linked to health and health issues, on both ends of the spectrum. But overall people, your weight in the grand scheme of things is not the most important thing. And above all, our size should not dictate our self-worth. We should appreciate all of what our bodies can DO, instead of how they look. My body has been through so much over the years between eating disorders and chronic illnesses. It’s time I start taking care of my body instead of punishing it; not seriously restricting my food intake, but eating foods rich in nutrients that will help my body heal. It’s time I start appreciating my body rather than criticizing it. It’s time for you to do the same.

Does Social Media Help Chronic Illness Sufferers, or Hurt Them? My Thoughts

 

I have grown my chronic illness Instagram quite a bit over the last year and a half, and I have met some amazing, strong individuals and connected with a lot of great people. But sometimes, I feel as though chronic illness can be looked at as a competition: who is the sicker one? Who takes the most medication? Who sees the most doctors? Who has the most diagnoses?

And – I am not saying that the chronic illness community on Instagram in particular is giving off this vibe on purpose. And I am also not saying that I am not contributing to this competitiveness within the community, because I very well could be. I look at it as a similar problem that is seen in the eating disorder community. One has to be very careful and selective of the people that one follows in the ed community, because it is soooo easy for Instagram to become the “who has the worst eating disorder” competition. And, as someone who suffered from Anorexia for eight years, I can safely say that a part of eating disorders is comparing yourself to others, and trying/wanting to look the “thinnest” or the “sickest.” And if you aren’t the thinnest or the sickest, you do not belong in treatment. This was my mentality. It’s sick and twisted, but I was sick…very sick. And it’s no different with chronic illness. The community that is built to support one another can so easily be turned into a competition if not careful. People, by no fault of their own, can get trapped in this cycle of seeing posts about doctors, medicines, blood pressure and heart rate numbers (which, by the way, I am guilty of posting) and feel like they are not sick enough or that they need to post more of these pictures, too. I feel this way sometimes. Scrolling through IG does not always leave me feeling better. In fact, at times it makes me worse. It makes me feel like maybe, I don’t belong in this chronic illness community on Instagram. I see the pictures of the doctor appointments, medications, and numbers…and I get anxious. I feel as though I need to post more of those things, and so I do, whenever I can or get the chance. And there I am, sucked into this vicious cycle or black hole where I am not really living my life, but engulfed in the IG world and defined by my illnesses. And trust me, that is NOT how I want to live. I don’t need pictures to prove to myself, and to others, how sick I am or that I really am sick to begin with.

Don’t get me wrong, IG has been great in that it has allowed me to make connections with others and gain support of people who get it. It has allowed me to support others who are going through similar issues. Not only that, but it has served as a good way to keep track of how I am doing. For that, I am so grateful for my account and the community. I think, we just need to be aware of the extent to which social media and the community can start to effect us in a negative way. If you find that you feel worse about yourself after scrolling on social media, or if you feel like you have to prove how sick you are, or if you start wondering if you even belong in the community or meet the criteria to be called a spoonie, then maybe social media is becoming more toxic than helpful. And I think we have to be mindful of this, and honest with ourselves about how advantageous our social media accounts really are. And of course, everyone has a different experience. Some people absolutely may not feel this way. Maybe it is my obsessive compulsive disorder and competitive nature that starts twisting things around.

Call me crazy, I just think that sometimes we get so wrapped up in social media that we forget that we actually have lives to live. And I want to do a little more living and a little less scrolling.

social media

What are your thoughts? Does social media bring out your competitive side? How does social media impact you as a chronic illness or eating disorder sufferer?