Elizabeth Murphy

@emcat1995 | contributor
I'm a 26-year-old writer getting used to life with fibromyalgia and chronic fatigue syndrome!
Community Voices

Narcissistic Family

Does anyone else deal with narcissistic family members?

Community Voices

On Turning 27

Reaching your late twenties is a mixed blessing. It's a time when a lot of people are finally feeling confident in their careers, completing graduate degrees, getting married, starting families, and accepting themselves for who they are. But it's also a time when your youth seems like it's coming to an end, you've outgrown a lot of friends you thought would be in your life forever, and you're comparing yourself to your parents and grandparents at your age. 27 is a bittersweet birthday for a lot of people, no matter how happy or successful they are. But it's especially so when you live with chronic illness.
I've been sick since I was 18. In October, fibromyalgia will officially have been part of my life for nine years. This also means that my entire adult life has involved working around the limitations of my disease. I first started showing symptoms in my freshman year of college, and it can be tough to think about all the ways in which my life has changed since then - and all the ways in which it hasn't. I never imagined at 18 that I would still be living with my mom at 27, or that I would never have worked a full-time job, or that I would be thousands of dollars in medical debt. As I prepare for my 27th birthday in March, I also feel like I've officially aged out of the demographic where it's okay to still be figuring things out. All of my friends, even the ones who got off to a rough start in adulthood like me, more or less have their shit together now. I'm the only one who's still 'working on it', and I feel left behind.
In the early days of my illness, I thought I would someday come across a doctor or a treatment or a medication that would fix everything. Or that one day I would wake up magically cured, and everything would fix itself. I thought I would spend my college years, and even some of my twenties, working through this setback, but that by the time I was approaching 30, my life would be back on track. I took me until I was 25 to accept that chronic illness often means 'illness that doesn't go away', and that that's likely going to be the case for me. There's no magical cure that's going to make my sickness go away, or give me back my late teens and my twenties. I've missed out on a lot of milestones that most people my age have reached, and there's nowhere for me to go but forward. Turning 27 is a hard pill to swallow for me, because I'm reaching a new phase in my life, and I'm nowhere near where I thought I'd be at this point. One of the toughest things about your late twenties is that you realize that the dreams you had as a kid and a teenager might not come true. You only get one life, and it might not go the way you always thought it would. But the one thing I can do is try and live as well as I can within my limitations, and remind myself that life doesn't have to exist on a strict schedule. As I go forward, to 27 and beyond, the best thing I can do is make my life meaningful, even if it's not in the ways I expected.

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Community Voices

Quotes From Chronic Fatigue Syndrome

An actual quote from me tonight: "In an unprecedented show of strength, I have washed the dish." #ChronicFatigue #ME #CFS

Community Voices

On Turning 27

Reaching your late twenties is a mixed blessing. It's a time when a lot of people are finally feeling confident in their careers, completing graduate degrees, getting married, starting families, and accepting themselves for who they are. But it's also a time when your youth seems like it's coming to an end, you've outgrown a lot of friends you thought would be in your life forever, and you're comparing yourself to your parents and grandparents at your age. 27 is a bittersweet birthday for a lot of people, no matter how happy or successful they are. But it's especially so when you live with chronic illness.
I've been sick since I was 18. In October, fibromyalgia will officially have been part of my life for nine years. This also means that my entire adult life has involved working around the limitations of my disease. I first started showing symptoms in my freshman year of college, and it can be tough to think about all the ways in which my life has changed since then - and all the ways in which it hasn't. I never imagined at 18 that I would still be living with my mom at 27, or that I would never have worked a full-time job, or that I would be thousands of dollars in medical debt. As I prepare for my 27th birthday in March, I also feel like I've officially aged out of the demographic where it's okay to still be figuring things out. All of my friends, even the ones who got off to a rough start in adulthood like me, more or less have their shit together now. I'm the only one who's still 'working on it', and I feel left behind.
In the early days of my illness, I thought I would someday come across a doctor or a treatment or a medication that would fix everything. Or that one day I would wake up magically cured, and everything would fix itself. I thought I would spend my college years, and even some of my twenties, working through this setback, but that by the time I was approaching 30, my life would be back on track. I took me until I was 25 to accept that chronic illness often means 'illness that doesn't go away', and that that's likely going to be the case for me. There's no magical cure that's going to make my sickness go away, or give me back my late teens and my twenties. I've missed out on a lot of milestones that most people my age have reached, and there's nowhere for me to go but forward. Turning 27 is a hard pill to swallow for me, because I'm reaching a new phase in my life, and I'm nowhere near where I thought I'd be at this point. One of the toughest things about your late twenties is that you realize that the dreams you had as a kid and a teenager might not come true. You only get one life, and it might not go the way you always thought it would. But the one thing I can do is try and live as well as I can within my limitations, and remind myself that life doesn't have to exist on a strict schedule. As I go forward, to 27 and beyond, the best thing I can do is make my life meaningful, even if it's not in the ways I expected.

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Elizabeth Murphy

I'm Sorry I Haven't Been a Great Friend

Ever since the onset of my fibromyalgia symptoms, I’ve lost a lot of friends. Some of it was natural; I started getting sick when I was 18 and just beginning college, which is a transitional time anyway. But some people have drifted away because they think I don’t have time for them, or because I was always canceling plans and after awhile they stopped inviting me. I understand why they feel hurt or angry. I would too, if it were my friend who never seemed to have time for me. It also doesn’t help that I’m a private person, and so I wasn’t telling everyone all the gory details of why I was never up for hanging out anymore. A lot of people probably felt like I’d abandoned them. For all my friends who’ve felt that way, I’m sorry. Becoming a shitty loved one for awhile can be a side effect of chronic illness, especially when you’re young and still trying to figure out all of your life, not just your new life with your symptoms. I am truly sorry for letting people fade out of my life, and I’m grateful to everyone who stuck around. For a long time, my fibromyalgia didn’t have a name. All I knew was I had a lot of mysterious symptoms — constant kidney infections, dizziness, fatigue, deep aches in my body that seemed to go all the way to the bone. I was in my late teens and early twenties, taking my first steps into college and the professional world. In my spare time, I enjoyed going to the doctor, getting blood drawn and urine samples taken and antibiotics prescribed. I was tested for everything from anemia to bone cancer, totally confusing my general practitioner in the process. During this period, my symptoms were basically labeled “mysterious chronic illness.” That was fun. I tried to, as my mother says, “keep on keeping on,” and for the most part, I did. I went to school full-time, or almost full-time. I worked. I did a capstone course for my major. I even wrote a novel. I did a pretty good job of living a normal life despite the symptoms. But you can’t do everything; eventually, something’s going to fall by the wayside. In my case, it was my friends. It didn’t happen all at once. People started drifting away after the third or fourth time in a row of me canceling plans because I was too tired, or because I never could commit to hanging out, or because I would respond to a “what’s up?” text two weeks later. I felt bad; I’ve always loved my friends, and even though I’m not an extrovert, I enjoy spending time with the people I’m close to. But going to work and school was taking up so much of my energy, I didn’t have enough left to make the effort I needed to. I don’t blame my friends. Like I said, I’m a private person, and I felt weirdly ashamed of having a chronic illness. I don’t know why. Maybe I was worried people wouldn’t believe me, or maybe I just didn’t want anyone to feel sorry for me. So from their perspective, it just looked like I was ghosting them for no reason. I was going on social media less frequently too, which closed off the one channel of communication that’s both easy and practically universal. I was missing out on the important things in their lives. I was becoming a terrible friend. I knew it, and I felt terrible about it, but I was too tired to do anything about it, even though I wanted to. Does that sound awful? It did to me. But a big part of my experience with chronic illness is that a lot of times, what I want to do and what I’m able to do are at odds. This is also why I’m still in college after five years. So as weird and selfish as it might sound to say that I really did want to make time for my friends but couldn’t, it’s true. Recently, I’ve started trying harder to spend time with people. I’ve been sick for awhile, so I’ve learned the drill. It’s easier to work my life around my symptoms after five years of practice. I have a more flexible job too, and I’m taking most of my classes online this semester. I’m still not perfect. I still cancel plans sometimes. I don’t go out with my friends as often as I’d like to. But I’m glad that people still want to spend time with me, and I try to make the most of the time I do spend with my friends. I’m truly grateful for the people who understand my limitations and are willing to work with me: inviting me to do daytime stuff because I have trouble staying out late, giving me advance notice about events, being flexible if I’m a couple of minutes late. I’m happy I have people who will meet me halfway, and I’m meeting them halfway too. I’m working on being more open about what I can and can’t do, and about what having fibromyalgia means. I haven’t become the pied piper of chronic illness, but explaining a little bit about fibromyalgia to my friends helps us understand each other better. I’m thankful for all the great people in my life, and I know that the more I get used to life with a chronic illness, the more my life will get back to normal.

Elizabeth Murphy

6 Things to Know If You Were Just Diagnosed With Fibromyalgia

There are a lot of things to get used to when you’re diagnosed with a chronic illness. Even before you officially know what’s wrong, managing symptoms can be an endless source of frustration. In some ways, getting a diagnosis does make things better. But once you have one, you have to adjust your lifestyle and your expectations to fit it. Getting diagnosed relieves a huge burden, but it also comes with a whole new host of challenges. So if you’re new to your chronic illness, don’t feel overwhelmed: it’s just another learning curve, and you can tackle it. The following are tips that I developed for myself to help me learn how to manage my fibromyalgia. Every illness is different, and every person is different, but if you’re struggling, they might help you too. 1. Understand that your fibromyalgia diagnosis doesn’t solve everything. While you’re experiencing mystery symptoms and being tested for a million different things, it can feel like if you can just get diagnosed, everything will be better. That’s how I felt for a long time, but once I heard the word “fibromyalgia,” it wasn’t a new era of enlightenment, it was a new challenge. Don’t get me wrong: understanding the problem is a huge part of solving it. But getting diagnosed is kind of like the moment someone struggling with addiction chooses to go to rehab. It’s the first day of the rest of their life, but they’re also going to face new struggles in their attempt to get sober. They’ll come out the other side of it stronger, but the beginning isn’t going to be easy. It sounds defeatist at first, but going into your new diagnosis with this attitude will make it easier when the challenges arise. 2. Temper your expectations. Not forever, but at least at first. One of the toughest things to get used to is the idea that you can’t do everything you used to be able to. In some cases, those things will come back. In other cases, they won’t. No matter what your situation is, you need to cut yourself some slack in the beginning. Understand that it’s OK if you don’t feel like the person you were before the fibromyalgia diagnosis, or if you aren’t meeting your own high standards. Chronic illness is a curveball. I started having severe symptoms when I was a rising senior in college, with a great job and a prestigious internship. I had to give up my job, and my graduation wound up being delayed by two years. It took me a long time to stop being hard on myself about that. I realize now that although I would have liked to graduate on time, that just wasn’t in the cards for me. That doesn’t make me lazy or weak. It was just a thing I had to deal with. Be kind to yourself. You’re already having a hard enough time; don’t make it worse by adding pressure or unrealistic expectations. 3. Do research on fibromyalgia, but not too much. When you’re newly diagnosed, the Internet is like a siren, filled with more information than you could possibly process on your condition. While it’s good to do research, and I don’t recommend sticking your head in the sand and not learning anything, don’t overwhelm yourself. Do the research on topics that matter to you, whether those are treatment options, doctors, support groups, or something else. Don’t get bogged down in the plethora of material available. An obscure study from the 90s or a random blogger from Minnesota’s opinions aren’t going to help you, and they’re not going to make you feel more confident about your health. Keep your research focused on the things that are important to you. 4. Everyone has an opinion. Only listen to the ones that matter. I can’t state this enough. When you tell people you have a chronic illness, the weirdos will come out of the woodwork. Some people will doubt that your condition is real, and will suggest that you’re probably allergic to gluten. Others will tell you going vegan will fix all your problems, or tell you to eat a sprig of lavender under the full moon while chanting to the god Saturn. Don’t be afraid to set people who doubt the veracity of your condition straight, but when it comes to the weirdos, remember that they’re just trying to help. Nod and smile, and understand that in their own hippie way, they want you to get better. Just don’t try anything that involves consuming strange plant materials. And remember that, no matter what other people think, no one knows your body better than you do. As long as you’re making informed decisions about your treatment, you’re doing the right thing. 5. Understand that your fibromyalgia is part of who you are. Like it or not, your fibromyalgia is a part of your bio now. You don’t have to lead every conversation with it, but know that it’s part of you. I’m not advocating pigeonholing or labeling yourself, and you don’t have to be the pied piper of chronic illness, but get used to the idea of having a chronic condition. It will only make things worse if you try to deny it, either to yourself or other people. That being said… 6. Know that your condition doesn’t define you. You’re not just a sick person. You’re not just a disabled person. You’re a person with a chronic illness, or a person with a disability. I understand how you can feel like fibromyalgia is wiping away who you are, and your only choices are either to live in denial that you have it or embrace the label completely. Don’t give it that power. You have your illness, but you are not your illness. Try and do the things you did before you were diagnosed, or before you started showing symptoms. One thing that I’ve always loved is reading, and I’ve been trying to do more of it as a way to remind myself of the person I am apart from my fibromyalgia. I also try and stay active as much as possible, because that’s always been a part of me too. Even if you have to make a list of the things that remind you of who you are apart from your illness and read it daily, do it. Reminding yourself of your own agency and your own personality outside of being sick will make the hard days a little easier. If you’ve just been diagnosed, or it’s been a while and you’re still struggling to adjust, it can feel like nothing is ever going to be the same. But take a deep breath. Relax. Remind yourself that you may have your illness, but you’re not your illness. And above all, remember that things will get better. It might take a while, but you’ll adjust to your new life with fibromyalgia and find a way to make it work for you.

Community Voices

OCD Trigger

Does anyone else with OCD notice that stress triggers it? I'm way more germaphobic and I have way more intrusive thoughts during stressful times. Does anybody else have this too? #OCD

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Community Voices

I Have Chronic Pain...But I Won't Take Pain Meds

If you have fibromyalgia, or someone you love does, you know one of the biggest symptoms is chronic pain. There are others too – a lot of others – but pain is the main headliner. Which is why doctors treat it by prescribing pain meds. I want to say upfront that this isn’t an indictment of pain medications or anyone who takes them –  they do a lot of good for a lot of people. But they’re not right for me. I get a lot of raised eyebrows when I say I have chronic pain and I don’t want to take pain meds. Some people assume the pain must not be that bad; if it were, I would take medication. Some people think I’m trying to be Arnold and tough it out. Some people think it’s some noble act of bravery. It’s actually none of those things. The truth is, addiction runs in my family. I have an addictive personality, and I worry that if I started taking pain medicine, I wouldn’t be able to stop. addiction is a problem multiple people in my family have struggled with. addiction to narcotic pain medication is something one person in particular deals with (for their privacy, I won’t say how they’re related to me, but they are a close relative). I watched this person’s addiction unfold in real time, and it’s not something I ever want for myself. I would rather deal with pain than with that. I’m not saying that to be tough, or to be brave, I’m saying it because it’s true. Pain sucks. There are days when I walk with a limp because my legs and ankles hurt so badly, or when it’s hard to do things with my hands because my wrists and fingers hurt. But addiction sucks more. I have a suspicion that I’ve inherited the addictive personality that runs in my family. I took Valium for anxiety on a short-term basis once, and getting off it was incredibly difficult. When my doctor told me I couldn’t have any more, I started brainstorming ways to get it anyway. I thought up ways I could get a different doctor to prescribe it, and ways I could get more doctors to prescribe it once that doctor cut me off. I was genuinely angry that the Valium had been taken away from me, and I’m embarrassed to admit that I punched pillows and screamed obscenities out loud when no one else was home during that period of coming down from it. Fortunately, I realized that I had a problem, and I forced myself to accept that I could never take Valium again. It was hard, but I started wanting it less, and finally I reached a point where I didn’t think about it anymore. What scared me about the experience was that I recognized in myself the same behaviors that my relative with narcotic addiction had engaged in: doctor shopping, anger at being refused drugs, lying to get more medication. While I never actually doctor shopped or lied to get a prescription, it scared me that I had wanted to. I realized then that I was lucky to have gotten off the Valium as easily as I had, and that I could never take any medication that could become addictive again. I’m not suggesting that my one experience with Valium makes me a budding drug addict, or that just because a close relative suffers from addiction you will too. But I recognized an emerging addictive personality in myself, and I cut myself off as fast as I could. This is why I continue to refuse heavy pain meds, even though a lot of people have suggested I should take them. I don’t want to get to a point where I can’t function without them. It’s a slippery slope, and you don’t realize you’ve slid all the way down until it’s too late. Again, this obviously isn’t the case for everyone. But it was for me, which is why I’ll always choose pain over the possibility of getting addicted. The devil you know is better than the devil you don’t. And there are other ways to deal with pain. I plan to try acupuncture when I can afford it, and taking over the counter pain relievers takes the edge off enough for me to get through the day. I know how to deal with pain. I know how to work around it. It might not be the perfect solution, but if it keeps me from struggling with addiction, it’s good enough.

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Community Voices

“You’re so young!” Having fibro at a younger age.

I’m 23, and was diagnosed with fibro, 2 1/2 years ago. Being told I am so young to have fibro makes me feel like I’m alone. Recently I’ve been struggling with finding people my own age who also have fibro. As much as I love and appreciate getting to talk to anyone of any age with the same condition. I would love to be able to talk to someone at a similar stage in their life. I thought I’d ask on here. Does anyone else feel the same? #Fibromyalgia #FibroFog

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Community Voices

Learning To Cope With Fibromyalgia

My independence was stolen by my chronic illness

When I was twenty, I was a full-time college student. I had a job, I was on track to graduate, and I had plans to get my own place and get a full-time job after graduation. Fast forward three years, and I’m working part time, going to school part time, and grappling with the knowledge that I might never be able to have a full-time job. I feel like I’m facing a life of total dependency, and I hate it.

Everyone wants to be independent. Which is why it’s hurtful when people imply that I don’t. I’ve heard that I’m using my chronic illness as a crutch, that I need to get a real job, that if I just moved out I would learn how to swim on my own. To people who say stuff like this, I say: Really? Do you really think I don’t want to be doing the same things as everyone else my age? Do you really think my life plan is to mooch off the government/my family? Not to even mention the implication that I’m faking or exaggerating my illness. The truth is, comments like this, whether they’re directed at me specifically or at chronically ill people in general, hurt my feelings and make me mad, because chronic illness isn’t fun or a vacation or a way to cheat the system. And I would trade the few perks I do get from being chronically ill for the independence I used to have in a heartbeat.

For the first eighteen years of my life, I was a hundred percent healthy. And even when I started exhibiting early signs of fibromyalgia in my late teens, I was still able to maintain a job, go to school and have friends. But when I was twenty-one, the pain got worse, the fatigue started, and it got harder and harder for me to do the stuff I used to. I went from taking a full load of classes to taking just one, and at one point, I stopped going to school completely. Luckily, I was able to make it back, and get a job too, but there was a time when I thought my college journey was over. Even though I’m back on track to graduate now, I’ll be doing it in six years instead of the three I originally anticipated, and I have no idea what I’m going to do once I do have my diploma. The more I look at my life, the more I worry that I’m not going to be able to support myself. Because of the fatigue, I struggle to work more than a few hours at a time; I currently work twelve hours, in three four-hour shifts, and that’s about my maximum limit. That’s fine for now, but twelve hours a week won’t support me when I’m out on my own with no one to help me pay the bills. Getting disability is a difficult, complex process, and the disability system isn’t designed for people like me anyway. Getting married is the solution some people suggest, but I haven’t dated anyone in five and a half years. Another side effect of chronic illness: it makes relationships hard. And even if I did find someone, I feel like I wouldn’t have a lot to offer them. Not to mention the obvious: getting married because you need someone to support you is a shitty reason to get married. The older I get, the more I feel like I’m running out of options. And I wish it wasn’t like this. I wish I could do the things I used to be able to do, the things I thought I would be doing at this point in my life. I feel like my fibromyalgia has robbed me of my independence, and of my plans for my future.

Some people think me saying this stuff means I’m complaining. What I really want to say is that I’m scared. I’m twenty-three now, but pretty soon I’ll be twenty-five, and then thirty, and then thirty-five. Time goes a lot faster than you realize. And if my fibromyalgia follows the current pattern, it’s going to get worse. I’m doing everything I can now, saving all the money I can and looking into all the options I have, because there might come a day when working at all isn’t possible. I do a lot of research, looking into treatments that might alleviate my symptoms and make it so that I can do more. And I hope for the best. I don’t succeed every day, or even most days. But I do try, and that’s good enough for now.

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