Kay Samuelson

@chronicallycandidkay | contributor
Kay is a 23 year old hot mess whose body is riddled with all sorts of chronic physical and mental illnesses. She's a three-time college dropout and an overall disappointment to herself and others. She's recently taken up writing and (gluten free) baking as outlets for her inner sadness and rage. If you can't already tell, she uses dark humor as a coping mechanism. If you like what you read and want to know more, find her on instagram and facebook @chronicallykay, or on twitter @chroniccandor.

Coping With Death in the Chronic Illness Community

The chronic illness community is no stranger to loss. We have all lost our health, our sense of normalcy, and a lot of us have lost the ease with which we used to relate to able-bodied people. Because of this, those of us in the community gravitate towards each other. Shared experiences create an unbreakable bond between us all. That bond is sacred, and it’s beautiful. That bond is the reason why we grieve so deeply when a member of our community passes away. Even though most of us have never met in person, we are gutted when we lose a member of our sacred chronically ill community. Each loss is layered with nuance that able-bodied people may be unable to fully comprehend. One of the main things I’ve learned through chronic illness is that meeting in-person is not a prerequisite for friendship. I have formed numerous deep, true, and long-lasting friendships with people whom I’ve only interacted with through a screen. The fact we’ve never met does not devalue or delegitimize the friendship in any way. Meeting someone with similar life experience to yours automatically creates a kinship that other relationships simply don’t have. It’s important to remember and acknowledge that we don’t need to be face to face to be close. People looking at our community from the outside may see us grieve the death of one of our own and wonder, “Shouldn’t you have seen this coming? They were very ill, after all.” To that I say —  loss is loss, regardless of whether or not you’re expecting it. Yes, we experience more medical emergencies and close-calls with death than the average person might. Yes, we know that our bodies could give out at any moment, and we know the same goes for our friends in the community. For some people we may even witness a steady decline. None of that can truly prepare you for the pain that comes with the finality of death. The pain of knowing that we can no longer chat with them online. The pain of knowing their last update was their last. Perhaps the most difficult part of a loss in our community is the fact that we see ourselves in everyone we lose. That’s why we bonded with them in the first place. Our entire community is built on the camaraderie of shared experience.  We look up to each other because we see ourselves in each others’ struggles.  We draw strength from watching others tackle the illnesses we share. And since we see ourselves in their lives, we can’t help but see ourselves in their deaths. Of course every body is different, and everyone’s illness progression is unique, but it’s inevitable for us to wonder when and how our time will come.  To wonder how much time we have before we follow in their footsteps. This aspect of the loss adds so much to the weight we’re already bearing. The weight of it all can be overwhelming and it can take a mental and physical toll on us. To those in our community who are grappling with the loss of one of our own I say this: take care of yourself, be gentle with yourself, and give yourself grace. You may find yourself to be unemotional, or overly emotional. You may have increased anxiety or fatigue. Allow yourself to cope however you need. Grieve however feels right for you. Don’t invalidate your own experience just because it may be different from others. Give yourself space and most importantly give yourself time. And remember that we are all here for each other. Lean on each other because we’ve all been there and we all know how it feels.

Time Runs Differently When You Live With Chronic Illnesses

You seem to forget that I’m constantly treading water. Day in and day out, I am trying to stay afloat. You forget the totality of all I have to juggle. Nine chronic illnesses, three mental illnesses, never-ending, all-encompassing pain. I know I carry it well. I make it look easy, manageable. So you forget. And you expect things from me. Things I can’t give. Things I shouldn’t have to give. You’ve gotten so used to my ability to overcome, you believe I should take everything in stride. No one should have to live up to expectations like that. I am allowed to take breaks, whether you approve of them or not. I am allowed to feel things in ways you may find unacceptable. I am allowed to prioritize things differently than you. I have a perspective that you may never understand, but that you must accept. And if you do something that puts me at risk, or triggers me in any way, you may not dictate how I respond. For years I have lacked bodily autonomy. My body is not under my control and I have adjusted to that. At times my mind hasn’t been under my control, and I adapted to that as well. I learned to go with the flow and function in something that is, at its core, wholly unpredictable. I’ve come to realize, however, that I can control how I react to the situations I find myself in.  Situations you put me in. And you do not get to say a damn thing about it.  You make decisions, and sometimes the consequences of those decisions involve me. If you break my trust, you don’t have the right to critique how I rebuild. The funny thing is, usually all I need is some time. Time to sit with my reality, ponder it, accept it and engineer a way forward. How much time?  My time frame is different than yours. Your able-bodied world moves fast — too fast. Whereas I live in limbo. Being disabled gives me an abundance of time alone with my thoughts. It took me years to adjust to this new way of life. I understand why you rush, I remember rushing, but I now live a life where absolutely everything I do and every decision I make have real, palpable, devastating side effects. Every little thing takes energy, and every day I wake up with my bodily low-fuel light already on. Because of this, when there’s something out of my control, I need time to craft a response to it. Please don’t forget that whatever issue we’re having is not the only issue I’m dealing with. For you it may be a very pressing issue but I am juggling so much at once that sometimes I simply can’t deal with one more thing. If I need to put our conflict to the side for a while so I can focus on other things first, I will do so. And you may not like that. You want action. You want forgiveness. You want a response and you want it now. You want me to make you feel better.  And that’s something that I inherently want to do, but I’m at the point in my chronic illness journey where I refuse to make others feel better if it is at any detriment to myself. I cannot afford it. I simply cannot afford to put the mental health of others above my own. I did that for years and I do not have energy or physical/mental health to do that anymore. What I need from you is time. Allow me to take my time. Allow me time to process and to reflect. Time to weigh my options. When I am ready, I will come to you and we will discuss and hopefully move forward. If you come to me (with anything besides an apology) before I am ready, the response you get will be an emotional equivalent of a rough draft. I won’t have had the time to work through my emotions, refining and compartmentalizing them.  I want to be able to work through things to the best of my ability, and I need you to understand that my process is different than yours. Overall, my well-being is my top priority; it has to be, regardless of whether you can accept that or not.

Time Runs Differently When You Live With Chronic Illnesses

You seem to forget that I’m constantly treading water. Day in and day out, I am trying to stay afloat. You forget the totality of all I have to juggle. Nine chronic illnesses, three mental illnesses, never-ending, all-encompassing pain. I know I carry it well. I make it look easy, manageable. So you forget. And you expect things from me. Things I can’t give. Things I shouldn’t have to give. You’ve gotten so used to my ability to overcome, you believe I should take everything in stride. No one should have to live up to expectations like that. I am allowed to take breaks, whether you approve of them or not. I am allowed to feel things in ways you may find unacceptable. I am allowed to prioritize things differently than you. I have a perspective that you may never understand, but that you must accept. And if you do something that puts me at risk, or triggers me in any way, you may not dictate how I respond. For years I have lacked bodily autonomy. My body is not under my control and I have adjusted to that. At times my mind hasn’t been under my control, and I adapted to that as well. I learned to go with the flow and function in something that is, at its core, wholly unpredictable. I’ve come to realize, however, that I can control how I react to the situations I find myself in.  Situations you put me in. And you do not get to say a damn thing about it.  You make decisions, and sometimes the consequences of those decisions involve me. If you break my trust, you don’t have the right to critique how I rebuild. The funny thing is, usually all I need is some time. Time to sit with my reality, ponder it, accept it and engineer a way forward. How much time?  My time frame is different than yours. Your able-bodied world moves fast — too fast. Whereas I live in limbo. Being disabled gives me an abundance of time alone with my thoughts. It took me years to adjust to this new way of life. I understand why you rush, I remember rushing, but I now live a life where absolutely everything I do and every decision I make have real, palpable, devastating side effects. Every little thing takes energy, and every day I wake up with my bodily low-fuel light already on. Because of this, when there’s something out of my control, I need time to craft a response to it. Please don’t forget that whatever issue we’re having is not the only issue I’m dealing with. For you it may be a very pressing issue but I am juggling so much at once that sometimes I simply can’t deal with one more thing. If I need to put our conflict to the side for a while so I can focus on other things first, I will do so. And you may not like that. You want action. You want forgiveness. You want a response and you want it now. You want me to make you feel better.  And that’s something that I inherently want to do, but I’m at the point in my chronic illness journey where I refuse to make others feel better if it is at any detriment to myself. I cannot afford it. I simply cannot afford to put the mental health of others above my own. I did that for years and I do not have energy or physical/mental health to do that anymore. What I need from you is time. Allow me to take my time. Allow me time to process and to reflect. Time to weigh my options. When I am ready, I will come to you and we will discuss and hopefully move forward. If you come to me (with anything besides an apology) before I am ready, the response you get will be an emotional equivalent of a rough draft. I won’t have had the time to work through my emotions, refining and compartmentalizing them.  I want to be able to work through things to the best of my ability, and I need you to understand that my process is different than yours. Overall, my well-being is my top priority; it has to be, regardless of whether you can accept that or not.

Time Runs Differently When You Live With Chronic Illnesses

You seem to forget that I’m constantly treading water. Day in and day out, I am trying to stay afloat. You forget the totality of all I have to juggle. Nine chronic illnesses, three mental illnesses, never-ending, all-encompassing pain. I know I carry it well. I make it look easy, manageable. So you forget. And you expect things from me. Things I can’t give. Things I shouldn’t have to give. You’ve gotten so used to my ability to overcome, you believe I should take everything in stride. No one should have to live up to expectations like that. I am allowed to take breaks, whether you approve of them or not. I am allowed to feel things in ways you may find unacceptable. I am allowed to prioritize things differently than you. I have a perspective that you may never understand, but that you must accept. And if you do something that puts me at risk, or triggers me in any way, you may not dictate how I respond. For years I have lacked bodily autonomy. My body is not under my control and I have adjusted to that. At times my mind hasn’t been under my control, and I adapted to that as well. I learned to go with the flow and function in something that is, at its core, wholly unpredictable. I’ve come to realize, however, that I can control how I react to the situations I find myself in.  Situations you put me in. And you do not get to say a damn thing about it.  You make decisions, and sometimes the consequences of those decisions involve me. If you break my trust, you don’t have the right to critique how I rebuild. The funny thing is, usually all I need is some time. Time to sit with my reality, ponder it, accept it and engineer a way forward. How much time?  My time frame is different than yours. Your able-bodied world moves fast — too fast. Whereas I live in limbo. Being disabled gives me an abundance of time alone with my thoughts. It took me years to adjust to this new way of life. I understand why you rush, I remember rushing, but I now live a life where absolutely everything I do and every decision I make have real, palpable, devastating side effects. Every little thing takes energy, and every day I wake up with my bodily low-fuel light already on. Because of this, when there’s something out of my control, I need time to craft a response to it. Please don’t forget that whatever issue we’re having is not the only issue I’m dealing with. For you it may be a very pressing issue but I am juggling so much at once that sometimes I simply can’t deal with one more thing. If I need to put our conflict to the side for a while so I can focus on other things first, I will do so. And you may not like that. You want action. You want forgiveness. You want a response and you want it now. You want me to make you feel better.  And that’s something that I inherently want to do, but I’m at the point in my chronic illness journey where I refuse to make others feel better if it is at any detriment to myself. I cannot afford it. I simply cannot afford to put the mental health of others above my own. I did that for years and I do not have energy or physical/mental health to do that anymore. What I need from you is time. Allow me to take my time. Allow me time to process and to reflect. Time to weigh my options. When I am ready, I will come to you and we will discuss and hopefully move forward. If you come to me (with anything besides an apology) before I am ready, the response you get will be an emotional equivalent of a rough draft. I won’t have had the time to work through my emotions, refining and compartmentalizing them.  I want to be able to work through things to the best of my ability, and I need you to understand that my process is different than yours. Overall, my well-being is my top priority; it has to be, regardless of whether you can accept that or not.

Why the 2020 Election Is Critical for People With Disabilities

An open letter to my conservative friends and family members, from a young, disabled woman in America: Whether you’re willing to admit it or not, the upcoming election will have a massive impact on my future as a disabled woman in America.  I know you have set political beliefs, and I know that they’re founded on certain principles.  So many of those principles are broad, impersonal and hypothetical, and I simply wish to illuminate the very real, dangerous consequences that will affect me and people like me if the country were to continue on its current path. I am a disabled woman, and I will be one for the rest of my life. I will need doctors for the rest of my life. I will be on medications for the rest of my life. I will probably be unable to hold a job for the rest of my life. At the moment, my family and I are privileged enough to have little to worry about financially, which is something I am incredibly grateful for and I do not want to take for granted. However, things can change in an instant. If anything happens to my parents, my entire future is in jeopardy. For instance, I won’t have health insurance.  All of my doctors that we fought so hard to find and secure over the last four years — I will no longer be able to afford to see them.  Realistically, how long do you think any inheritance I receive will last when I have to start paying for all of my medical care out of pocket? Or when I have to pay for my own insurance? And once appointments and meds start falling through the cracks, my health will decline, making my ability to find and hold a job even less feasible. Not to mention that in this country it is legal to pay a disabled person lower than minimum wage. I’m sure you’re reading that and thinking “that can’t be true,” but it is. Think about all the hoops I’ve had to jump through just to try to receive government assistance. As a whole, the system that’s in place is designed to dehumanize disabled people, and to make it as difficult as possible to navigate. Not only that, but (assuming I would eventually be able to get approved for Disability) the system is designed to keep me in poverty. I can’t ever have over $3,000 in total combined assets.  So in order to be approved and to stay eligible, I’d have to spend my entire inheritance and then live with less than $3,000 in my possession at all times, or else my benefits would be stripped away, and I’d be left without income and without insurance once again. It’s so easy to view political issues as someone else’s problem, but this is my reality.  I very likely will need to be dependent on the government in my future. Something could happen to my parents, my financial support system, at any time.  As wonderful as it is that they’re hoping to support me for the foreseeable future or the rest of my life, that plan could be stripped away at any moment. Not to mention that there are millions of people just like me who don’t have that option. There are millions of disabled Americans who don’t have the option of being supported by their parents.  Millions of Americans foregoing doctors’ appointments and life-saving medications because it’s too expensive.  Disabled Americans in hundreds of thousands of dollars in debt from going to the ER and getting a simple CT scan or surgery. According to frontsteps.org, in 2016, 47.6% of homeless Americans were disabled. The only difference between me and them is that my parents are alive, wealthy, and willing and able to take care of me. Without them, in our current America, it’s no stretch of the imagination to say there’s a good chance I’d be destitute. COVID has not only increased America’s disabled population, but it has increased America’s homeless, and uninsured population.  Trump spent a major portion of his presidency rolling back policies his predecessors had put in place. Policies that, whether you agree with them or not, had a direct impact on disabled people’s access to healthcare.  Trump not only stripped away healthcare from those who arguably needed it most, but he is dismantling things like Social Security, which (although they are flawed systems) have a direct impact on me and people like me. What I just laid out for you is the world Trump is leaving for current and future generations. I am the first to admit that Biden was not my first choice; in fact, I think he totally sucks. Many people are not happy about Biden. But Biden has consulted disabled advocates and has come up with a comprehensive plan to bolster services for disabled Americans. A link to his plan can be found here.  I am begging you to just read through his plan.  It’s not perfect, but compared to the current administration, it’s night and day. In the next four years, if Trump remains president, the damage he does will have permanent consequences.  No one can guarantee that they’ll be able to keep me safe. COVID (and Trump’s abhorrent handling of it) should have proven that already. The current administration could not care less if I live or die. I am terrified of the state of the world right now.  My life and my future are at risk, and I really need you to consider and understand that. This isn’t hypothetical, this is a very real and very normalized way of life for disabled people. Either we’re wealthy enough to stay afloat, or we’re abandoned by society and expected to roll over and die rather than inconvenience the taxpayer.  I’m sure most people wouldn’t phrase it so bluntly, but that’s the bottom line. I love you and respect your views, I just want to make you aware of things you may have never considered before. I want you to understand how real the consequences of this election are for me and for all marginalized people in America. I want you to know that your vote could make all the difference in how my future plays out.

Why the 2020 Election Is Critical for People With Disabilities

An open letter to my conservative friends and family members, from a young, disabled woman in America: Whether you’re willing to admit it or not, the upcoming election will have a massive impact on my future as a disabled woman in America.  I know you have set political beliefs, and I know that they’re founded on certain principles.  So many of those principles are broad, impersonal and hypothetical, and I simply wish to illuminate the very real, dangerous consequences that will affect me and people like me if the country were to continue on its current path. I am a disabled woman, and I will be one for the rest of my life. I will need doctors for the rest of my life. I will be on medications for the rest of my life. I will probably be unable to hold a job for the rest of my life. At the moment, my family and I are privileged enough to have little to worry about financially, which is something I am incredibly grateful for and I do not want to take for granted. However, things can change in an instant. If anything happens to my parents, my entire future is in jeopardy. For instance, I won’t have health insurance.  All of my doctors that we fought so hard to find and secure over the last four years — I will no longer be able to afford to see them.  Realistically, how long do you think any inheritance I receive will last when I have to start paying for all of my medical care out of pocket? Or when I have to pay for my own insurance? And once appointments and meds start falling through the cracks, my health will decline, making my ability to find and hold a job even less feasible. Not to mention that in this country it is legal to pay a disabled person lower than minimum wage. I’m sure you’re reading that and thinking “that can’t be true,” but it is. Think about all the hoops I’ve had to jump through just to try to receive government assistance. As a whole, the system that’s in place is designed to dehumanize disabled people, and to make it as difficult as possible to navigate. Not only that, but (assuming I would eventually be able to get approved for Disability) the system is designed to keep me in poverty. I can’t ever have over $3,000 in total combined assets.  So in order to be approved and to stay eligible, I’d have to spend my entire inheritance and then live with less than $3,000 in my possession at all times, or else my benefits would be stripped away, and I’d be left without income and without insurance once again. It’s so easy to view political issues as someone else’s problem, but this is my reality.  I very likely will need to be dependent on the government in my future. Something could happen to my parents, my financial support system, at any time.  As wonderful as it is that they’re hoping to support me for the foreseeable future or the rest of my life, that plan could be stripped away at any moment. Not to mention that there are millions of people just like me who don’t have that option. There are millions of disabled Americans who don’t have the option of being supported by their parents.  Millions of Americans foregoing doctors’ appointments and life-saving medications because it’s too expensive.  Disabled Americans in hundreds of thousands of dollars in debt from going to the ER and getting a simple CT scan or surgery. According to frontsteps.org, in 2016, 47.6% of homeless Americans were disabled. The only difference between me and them is that my parents are alive, wealthy, and willing and able to take care of me. Without them, in our current America, it’s no stretch of the imagination to say there’s a good chance I’d be destitute. COVID has not only increased America’s disabled population, but it has increased America’s homeless, and uninsured population.  Trump spent a major portion of his presidency rolling back policies his predecessors had put in place. Policies that, whether you agree with them or not, had a direct impact on disabled people’s access to healthcare.  Trump not only stripped away healthcare from those who arguably needed it most, but he is dismantling things like Social Security, which (although they are flawed systems) have a direct impact on me and people like me. What I just laid out for you is the world Trump is leaving for current and future generations. I am the first to admit that Biden was not my first choice; in fact, I think he totally sucks. Many people are not happy about Biden. But Biden has consulted disabled advocates and has come up with a comprehensive plan to bolster services for disabled Americans. A link to his plan can be found here.  I am begging you to just read through his plan.  It’s not perfect, but compared to the current administration, it’s night and day. In the next four years, if Trump remains president, the damage he does will have permanent consequences.  No one can guarantee that they’ll be able to keep me safe. COVID (and Trump’s abhorrent handling of it) should have proven that already. The current administration could not care less if I live or die. I am terrified of the state of the world right now.  My life and my future are at risk, and I really need you to consider and understand that. This isn’t hypothetical, this is a very real and very normalized way of life for disabled people. Either we’re wealthy enough to stay afloat, or we’re abandoned by society and expected to roll over and die rather than inconvenience the taxpayer.  I’m sure most people wouldn’t phrase it so bluntly, but that’s the bottom line. I love you and respect your views, I just want to make you aware of things you may have never considered before. I want you to understand how real the consequences of this election are for me and for all marginalized people in America. I want you to know that your vote could make all the difference in how my future plays out.

Community Voices

The Complexities of Having Able Bodied Friends

Being disabled and being friends with able bodied people is way harder than anyone realizes.  We’re constantly being left behind and overlooked. As they move forward in their lives, we have to sit back and watch them go.  No one wants to admit it, but it gets really hard to be happy for them after a while.  They graduate college, awesome!  we’re stuck in bed in pain.  They get their dream job, great!  We’re stuck in bed in pain.  They get married, nice!  We’re stuck in bed in pain.  They drift further away the more they accomplish.  It’s only natural.  They get busy and they get tired of hearing about your doctors appointments.  They stop asking how you’re doing because they know it’ll be the same answer as always.  Then suddenly the things they complain about make you roll your eyes.  The occasional headache, an annoying coworker, a pulled muscle, their husband snores… but they have their health, and they’re taking it for granted.  It’s infuriating. It’s gut-wrenching. It’s heartbreaking.  We are losing them.

A disabled friend once told me that we put our able bodied friends on a pedestal.  We have been abandoned by so many people.  So many family members and friends left when the going got tough for us.  Those who stayed are now elevated in our minds for doing the bare minimum by staying in our lives.  When we elevate them in that way, they automatically become more important to us than we are to them.  If they lost us as a friend, they would have plenty other friends to replace us with.  If we lose them, we lose a huge piece of our lives.  We put all our eggs in their baskets and they just don’t understand the significance of that.

These people often remind us of a time before we were sick.  Their presence in our lives creates a nostalgic sense of normalcy that we need in order to stay positive.  Disability and chronic illness are all-consuming, they take up space every second of every day of our lives, and having able bodied friends around oftentimes takes our mind off of what’s wrong with our bodies.  The problem is that the absence of these friends oftentimes sends us spiraling.  While they’re off living their lives and moving forward, we are alone, we are stuck, and we are comparing ourselves to them.  They are fine without us, we are gutted without them.  And, just like everything else in our lives, it is not fair.

Disabled people deserve better.  We deserve friends who take an active part of our lives.  We deserve to be given the benefit of the doubt, and to be treated with respect.  We deserve to be friends with people who value us and our friendship.  We have so much love to give, and we deserve to get love back.

P.S. If you’re an able bodied friend of a disabled person: be better.  If you’re a disabled person with an able bodied friend who doesn’t value you: demand better.

3 people are talking about this
Community Voices

Able Bodied People Don't Understand

No matter how hard you try to explain the realities of living with chronic pain to people, they simply will not understand.  Doesn’t matter if they live with you, if they’re around you all the time, or if you write a whole article explaining it (which I did), unless they experience chronic pain themselves, they will not get it.

They do, however, understand acute pain.  This unfortunately puts us in the crappy position of not only listening to our friends and family complain about acute pain, but also listening to them empathize with others in acute pain, while our pain is often overlooked.

Pain is pain, and pain is valid.  Acute pain sucks and it can be overwhelming.  I’m not here to tell able bodied people that they aren’t allowed to feel pain.  The problem is when an able-bodied person complains often and loudly in the proximity of a chronically ill person; and when other able bodied people dote on the person in acute pain while completely passing over the person in chronic pain.

For example, say you and a family member both have severe back pain at the same time.  You hold yourself together, meanwhile your family member begins to complain, then begins cry about their pain.  The whole family comforts her and offers her aid.  Then someone decides to pray for your family member’s pain to subside. Not one mention of you or your pain.

Brutal, right? First of all, you’ve been snubbed, plain and simple.  Jesus ain’t helping your pain cuz it wasn’t put on his to-do list.  Secondly, her pain is curable.  If she takes an advil and waits 20 minutes, she’ll be absolutely fine. You know this because you’ve seen it happen multiple times, and such is the nature of acute pain.  Alternatively, I could take an opioid and my pain still wouldn’t go away.  Third, your family has clearly prioritized her pain.  Why?  Because they understand it.  If they pray for God to heal her paon, then they give her some advil… you see where this is going.  Even if they pray for my headache, it’s here to stay. And they’re aware of this, be it consciously or subconsciously.  They’ve all had back pain, severe even, and it’s always gone away.  Meanwhile I’m over here 3 years into pain that’s most likely going to last the rest of my life.

Oh, and God forbid you ask them to refrain from complaining about things like acute pain, antibiotics, sore muscles, etc. while you’re in the room. Because how dare you “invalidate someone’s feelings”… double standard much?  And the thing is, they could read this very article and nothing would change.  Not because they’re disrespecting you on purpose, but because this just isn’t something they consider in their daily lives.  They also just don’t understand that just because we deal with pain every day and we appear to have it under control, doesn’t mean our pain is any less severe than acute pain.  In fact, it’s often much more severe, and we’ve just taught ourselves to mask it in order to avoid making able bodied people feel uncomfortable.

But here’s the thing, from my experience, everyone with chronic illness has gone through this. Everyone is isolated by their chronic pain.  Everyone has had to put on a brave face while having their pain looked over by the people closest to them. Everyone has had awful pain while listening to someone complain about stubbing their toe.  It SUCKS and it’s frustrating as hell, but if/when you’re going through this, there is a huge community of chronically ill people on social media who have been through the same.  Regardless of how alone your family or friends are making you feel, you are not alone in your pain or your frustration and/or seething rage. We’ve all been there, and we’ve got your back.

2 people are talking about this
Community Voices

When Chronic Illness Makes Me Feel Worthless

There are days when I feel absolutely worthless. Days where I contemplate the reality of my life, and seemingly everything comes up short.

Let’s go through the list of disappointments, shall we?  I am a 21 year old 3-time college drop out.  I have maybe one semester of college completed, and most of those units come from AP classes I took in high school.  I haven’t had a job in 3 years.  The only job I’ve ever had was dressing up as a princess for kids birthday parties so my overall work experience is lacking.  Last summer I tried dogsitting for two weeks and I got so insanely sick from it that my parents had to take over because I collapsed in my cousin’s driveway and literally couldn’t move for 3 days. I have zero income. I applied for Disability benefits and was denied because I never held a job that paid into social security.  Isn’t it dumb that I can’t work due to being disabled and I can’t get Disability because I haven’t worked?  I haven’t driven for 7 months.  I volunteered at a hospital last year, was given the easiest job they had (my coworkers were over 90 years old), only worked one day per week for 4 hours just sitting in a chair, and STILL didn’t even last 3 months.  I haven’t been able to work a volunteer shift in 6 months.

In a weird way it seems like I peaked in high school, and not for the normal reasons.  I wasn’t popular, I didn’t do sports, barely did any extracurriculars at all, but my 4.3 high school GPA is glaring me in the face.  I was so on top of my shit in high school.  I was objectively someone my family could be proud of.

The cold hard facts of my lack of post-high school achievements unfortunately speak for themselves.  However, I need to remind myself of some other facts.  3 years ago I became bedbound for a year and a half.  I was unable to stand for 10 seconds without passing out.  Despite this, I completed 3 online college courses.  While my peers were tackling college, I was in 24/7 pain, unable to walk, searching for diagnoses.  Throughout all of this I never gave up hope.  Despite my pain I bravely attempted going back to school, finding work, and volunteering.  Even though I failed at these things, I respect myself for having the guts to even attempt them. I began baking, which I never ever thought I would do since I’ve always been afraid of the oven.  I fearlessly went through medical procedures that would have given high school me a panic attack. I fucking relearned how to walk.  I fought for better doctors, better testing, and better treatments.  My fighting paid off because I now have 7 diagnoses, after so many years of uncertainty.  I began writing and got an article published.  I went from hiding my illnesses and disabilities to being proud of them and sharing my story and experience with anyone who will listen.

Most importantly, I found strength I never knew I had, and despite my feelings of worthlessness, that strength will always be there, and will always pull me through.

Community Voices

Chronic Pain Explained

To people who don’t understand #ChronicPain:

What a lot of people don’t understand about chronic pain is that it’s unrelenting. 24/7 365 days per year, we are in pain. Even when we’re smiling, even when we’re sleeping. There is no end.  and that takes a physical and emotional toll.

Think about how frustrated you are when you stub your toe, or how miffed you get when you put hand sanitizer on a paper cut.  Think about how you’re constantly aware of and irritated by a canker sore or a hang nail.

Now consider this: the amount of pain we are in on a daily basis would put you in the emergency room, no question. We have no concept of what a zero on the pain scale feels like anymore.  We’re lucky if we get down to a 3, and even then, our 3 is your 6, and our 6 is your 9.  We live our lives as functionally as possible in an amount of pain with which you would not be able to function.

A lot of the examples I used earlier are singular injuries, however most people who suffer from chronic pain suffer from multiple illnesses that all cause their own specific, constant pain.  So imagine deep paper cuts on every finger, along with 5 canker sores in your mouth, 2 stubbed big toes, and 10 hangnails…. and you know none of them will ever heal.

You’d think you would get used to the pain but you never really do.  You can get used to the idea of being in pain, and the idea of trying to function as best you can while in pain, but you never get used to the pain itself.  Especially because the body likes to switch it up, so every day you wake up not knowing which of your conditions will cause the most pain.  Some days the “hang nails” are more excruciating than the “stubbed toes,” and the next day the “paper cuts” make you want to crawl out of your skin.

I personally have multiple diagnoses that cause me pain.  I have had a constant #Headache for the last 3 years.  I have horrible nerve pain from the waist down that doesn’t respond to medication and oftentimes renders me unable to walk. I have #Gastroparesis, which causes food to sit in my stomach for hours and hours on end, making me feel like I swallowed a boulder.  I have joints that partially dislocate whenever they please.  Thanks to EDS, oftentimes I will wake up with both of my hips partially dislocated and my muscles seized up so tightly around them that I am unable to put them back into place until my muscle relaxer kicks in, which can take hours. I have #Endometriosis, a disease in which tissue similar to endometrium grows outside the uterus, and whenever I have a period I bleed internally. I have Autonomic Neuropathy and POTS, both of which contribute to my head and leg pain.  I wake up every day not knowing which of these illnesses will cause me the most pain.  None of these conditions will ever go away.  This is my reality every minute of every day.

As I hope you can see, this is far beyond the paper cut analogy. It’s infuriating and exhausting, disheartening and stifling, agonizing and all-encompassing. Please keep this in mind and be patient with us.

1 person is talking about this