Christina Irene

@christinairene | contributor
Super Contributor
Author/speaker/comedian with osteoarthritis, fibromyalgia, CFS, IBS. I made TalkingSplat.com to help people like me live better lives, and people who aren't like me to understand us.

What to Remember During a Fibromyalgia Flare

Flares don’t just affect you physically — there’s a tremendous emotional/psychological affect as well. Just because your body isn’t moving doesn’t mean your mind isn’t running around in circles. Sometimes, all we can do is just survive in the present moment. So here are some things to keep in mind next time you’re in the throes of a flare: 1. You will get through this (really). You have gotten through it before. 2 . You are not being lazy. Taking care of yourself is doing something. 3. The dirt/dust/laundry/house projects will still be there when you’re feeling better. Trust me. 4. You will get to the dirt/dust/laundry/house projects. Eventually. You always do. 5. Life is not a sprint, it’s a marathon. Not everything needs to be done now. 6. Be kind to yourself. If your kids were sick, would you hound them with guilt and admonish them for resting? More likely you’d offer to make them soup or sit with them. You deserve the same. 7. Move. No matter how much it hurts, you still need to move. This could be as simple as clenching and unclenching your fist or bending and extending your leg. The more you sit or lay, the more stiffness will set in. Stiffness = pain. 8. You are not “so and so” on Instagram, Facebook or Twitter. Do not compare yourself to other people. You have no idea what their reality is. How can you possibly compare yourself to “that”when you don’t even really know what “that” is? (Don’t believe me? How many selfies do you take before posting one?) 9. Give yourself permission to be down. Your body really does know itself. 10. Drink water. No matter how awful you feel. Hydrate. If you can’t stomach much at a time, take small sips. Dehydration will only make everything worse — your body needs water. And God forbid a migraine comes, too. 11. You are so much stronger than you think. Really. 12. Celebrate every victory. If that is as simple as being happy you showered, so be it. Showering is still an achievement. 13. Try to be present in this moment. Continuously thinking and worrying about the future isn’t helpful. Just get through here and now. 14. Look for beauty. No matter how awful it is, there is still beauty. A dog’s kiss, your cat purring, a beautiful sunset, time spent with those you love. No matter how bleak you feel, remember there is still beauty. 15. Eat well. Trust me, I know how Herculean this may seem. I’m not saying cook. Try reaching for a banana, apple chips or a yogurt. While processed food is usually easier, it doesn’t always help your body. 16. Let go of the guilt. This resonates with #6. Guilt is so counterproductive. It won’t help. It will only create more stress and anxiety. You didn’t choose this. 17. Go outside. I glare at my husband when he pushes this on me, but it does help. If you can only handle five minutes, so be it. The clean air and sunlight helps. 18. Try to smile or laugh. Find dancing parrots or playful kitten videos. 19. Remember to be grateful. Yup. I know it’s almost impossible to feel grateful when cutting off your arm with a spoon might be less painful. But there is always something to be grateful for; like having ice cream in the house. 20. Lose yourself in love. Hug your dog, hug your spouse/significant other, listen to your kids. Remind yourself why you fight. 21. It’s OK to be down, angry or hopeless. Cry. Swear. Yell. Throw things. (I prefer pillows and empty water bottles.) Whatever gets you through this moment. Do it. 22. Do something or have someone else do something you love. My best example of this is my husband painting my toes to cheer me up. That’s true love. From one person having a really bad week to another, we got this. Well, sort of. Even when it feels like we don’t.

The 5 Stages of Fibromyalgia Diagnosis and What Happens Next

It started with some tenderness in two or three knuckles. A couple of days later, my hands were definitely hurting and my elbows were sore. A couple of days after that, I felt it in my shoulders, too. Then suddenly, my whole body just ached, the way it does if I have a very bad cold, and I was so, so tired. I remember family visited to help me with a home repair and I could barely move from the couch. That’s when we all recognized that something was definitely not right. It was a full year later when I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, and what an awful year that was. What It’s Like to Be Undiagnosed I didn’t have words to talk about it. It was simply “I have this mysterious thing going on” followed by me listing all these invisible symptoms. I had even less credibility than I do now. People just didn’t believe me. I didn’t know how to treat it. How can I treat what I don’t know I have? I didn’t have my people, my community of those who are living through a similar thing, because I didn’t know what my thing was. Instead of worrying about the one (or, as it turns out, two) diagnoses that I had, I was constantly worrying about the multitude of diagnoses it could possibly be. Until I knew which ones I had, it was like I had them all! I was burning time off at work going to all the appointments, and still no answers. I was frustrated. It was more loss. I couldn’t begin the acceptance and grieving process, because I had no clear picture of what I was supposed to grieve. The Stages of Diagnosis In hindsight of my experience, I identified what I call the “five stages of diagnosis” that I think many people can relate to. 1. Onset of fibromyalgia symptoms. This is when weird stuff starts to happen. I did my best to explain each symptom away and pretty much ignore what was going on while I waited for it to go away. 2. Self-diagnosis. It didn’t go away, so I hit the Google, and of course, any time we look online for a diagnosis, we inevitably have cancer and AIDS. We really need to skip this step and let a professional do their job.* 3. Medical testing. Yes, I went to a doctor. This part was awful. It took three different phlebotomists four tries to draw my blood and I hate needles to begin with. The tests yielded no answers. I was very frustrated and hated using my limited time off work being actually sick. I went to another doctor, whom I saw regularly, and they still gave me no answers. 4. Diagnosis. It was when I regressed back to stage 2 and determined that I had chronic fatigue syndrome that my rheumatologist listened and diagnosed me with both chronic fatigue syndrome and fibromyalgia. (*I know I say skip stage 2, but in my case, I did have to do some of my own work. “Let a professional do their job” only works if they’re actually doing their job.) Now I had answers. I had words at last. I had a picture of my future. I could begin the grieving process and figure out the next steps. 5. Treatment selection. Now that I had a diagnosis, I could treat it. My rheumatologist started me on medication, which I hated, and I stopped taking it and also stopped going to the rheumatologist because I didn’t like how she pressured me to try that medicine. I currently manage my fibromyalgia with vitamins and supplements, diet, exercise, sleep, and joy. Things change as I learn more about what’s available and more about myself. This stage is lifelong. What Went Wrong in My Medical Care I feel faulted that my diagnosis took a year, and still, I hear stories from people whose diagnoses take decades. There is a shortage of medical professionals who specialize in fibromyalgia care; there is a shortage of belief in fibromyalgia and chronic fatigue syndrome within the medical community. There is a shortage of giving-a-rats-behind within the medical community when it comes to conditions that affect predominantly women. So I got whom I got. When she finally diagnosed me, that day I arrived with a self-diagnosis, she said to me, “Why didn’t you tell me all this before?” referring to the symptoms I reported … and had reported all along. That made me angry. Then she shoved me into her box of what she believed fibromyalgia to be — a one-size-fits-all box — and insisted I take a medication for the pain. I told her my pain wasn’t that bad. I pleaded for help with the fatigue and brain fog. I refused to take the medication at first; then she guilted me into it at my next appointment. The side effects were (wait for it…) fatigue and brain fog! For consistently not listening to me, for not bothering to know me as a person and my fibromyalgia as my unique version of it, I never went back. How I’m Thriving Now I created the Splat System to help me not just talk about my fibro and CFS but also to live a better life with routines and self-care and enable other people to help and support me. I’ve self-taught a lot about nutrition and try to eat and do the things that make my body feel as best as it can. I’ve learned to replace things I’ve lost with new joys. I started my own business (teaching about invisible disabilities!) so I have total control over my work life and can accommodate my disability. And sometimes I feel sorry for myself because it does suck to have these conditions, and I cry, and that’s OK.

The 5 Stages of Fibromyalgia Diagnosis and What Happens Next

It started with some tenderness in two or three knuckles. A couple of days later, my hands were definitely hurting and my elbows were sore. A couple of days after that, I felt it in my shoulders, too. Then suddenly, my whole body just ached, the way it does if I have a very bad cold, and I was so, so tired. I remember family visited to help me with a home repair and I could barely move from the couch. That’s when we all recognized that something was definitely not right. It was a full year later when I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, and what an awful year that was. What It’s Like to Be Undiagnosed I didn’t have words to talk about it. It was simply “I have this mysterious thing going on” followed by me listing all these invisible symptoms. I had even less credibility than I do now. People just didn’t believe me. I didn’t know how to treat it. How can I treat what I don’t know I have? I didn’t have my people, my community of those who are living through a similar thing, because I didn’t know what my thing was. Instead of worrying about the one (or, as it turns out, two) diagnoses that I had, I was constantly worrying about the multitude of diagnoses it could possibly be. Until I knew which ones I had, it was like I had them all! I was burning time off at work going to all the appointments, and still no answers. I was frustrated. It was more loss. I couldn’t begin the acceptance and grieving process, because I had no clear picture of what I was supposed to grieve. The Stages of Diagnosis In hindsight of my experience, I identified what I call the “five stages of diagnosis” that I think many people can relate to. 1. Onset of fibromyalgia symptoms. This is when weird stuff starts to happen. I did my best to explain each symptom away and pretty much ignore what was going on while I waited for it to go away. 2. Self-diagnosis. It didn’t go away, so I hit the Google, and of course, any time we look online for a diagnosis, we inevitably have cancer and AIDS. We really need to skip this step and let a professional do their job.* 3. Medical testing. Yes, I went to a doctor. This part was awful. It took three different phlebotomists four tries to draw my blood and I hate needles to begin with. The tests yielded no answers. I was very frustrated and hated using my limited time off work being actually sick. I went to another doctor, whom I saw regularly, and they still gave me no answers. 4. Diagnosis. It was when I regressed back to stage 2 and determined that I had chronic fatigue syndrome that my rheumatologist listened and diagnosed me with both chronic fatigue syndrome and fibromyalgia. (*I know I say skip stage 2, but in my case, I did have to do some of my own work. “Let a professional do their job” only works if they’re actually doing their job.) Now I had answers. I had words at last. I had a picture of my future. I could begin the grieving process and figure out the next steps. 5. Treatment selection. Now that I had a diagnosis, I could treat it. My rheumatologist started me on medication, which I hated, and I stopped taking it and also stopped going to the rheumatologist because I didn’t like how she pressured me to try that medicine. I currently manage my fibromyalgia with vitamins and supplements, diet, exercise, sleep, and joy. Things change as I learn more about what’s available and more about myself. This stage is lifelong. What Went Wrong in My Medical Care I feel faulted that my diagnosis took a year, and still, I hear stories from people whose diagnoses take decades. There is a shortage of medical professionals who specialize in fibromyalgia care; there is a shortage of belief in fibromyalgia and chronic fatigue syndrome within the medical community. There is a shortage of giving-a-rats-behind within the medical community when it comes to conditions that affect predominantly women. So I got whom I got. When she finally diagnosed me, that day I arrived with a self-diagnosis, she said to me, “Why didn’t you tell me all this before?” referring to the symptoms I reported … and had reported all along. That made me angry. Then she shoved me into her box of what she believed fibromyalgia to be — a one-size-fits-all box — and insisted I take a medication for the pain. I told her my pain wasn’t that bad. I pleaded for help with the fatigue and brain fog. I refused to take the medication at first; then she guilted me into it at my next appointment. The side effects were (wait for it…) fatigue and brain fog! For consistently not listening to me, for not bothering to know me as a person and my fibromyalgia as my unique version of it, I never went back. How I’m Thriving Now I created the Splat System to help me not just talk about my fibro and CFS but also to live a better life with routines and self-care and enable other people to help and support me. I’ve self-taught a lot about nutrition and try to eat and do the things that make my body feel as best as it can. I’ve learned to replace things I’ve lost with new joys. I started my own business (teaching about invisible disabilities!) so I have total control over my work life and can accommodate my disability. And sometimes I feel sorry for myself because it does suck to have these conditions, and I cry, and that’s OK.

The 5 Stages of Fibromyalgia Diagnosis and What Happens Next

It started with some tenderness in two or three knuckles. A couple of days later, my hands were definitely hurting and my elbows were sore. A couple of days after that, I felt it in my shoulders, too. Then suddenly, my whole body just ached, the way it does if I have a very bad cold, and I was so, so tired. I remember family visited to help me with a home repair and I could barely move from the couch. That’s when we all recognized that something was definitely not right. It was a full year later when I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, and what an awful year that was. What It’s Like to Be Undiagnosed I didn’t have words to talk about it. It was simply “I have this mysterious thing going on” followed by me listing all these invisible symptoms. I had even less credibility than I do now. People just didn’t believe me. I didn’t know how to treat it. How can I treat what I don’t know I have? I didn’t have my people, my community of those who are living through a similar thing, because I didn’t know what my thing was. Instead of worrying about the one (or, as it turns out, two) diagnoses that I had, I was constantly worrying about the multitude of diagnoses it could possibly be. Until I knew which ones I had, it was like I had them all! I was burning time off at work going to all the appointments, and still no answers. I was frustrated. It was more loss. I couldn’t begin the acceptance and grieving process, because I had no clear picture of what I was supposed to grieve. The Stages of Diagnosis In hindsight of my experience, I identified what I call the “five stages of diagnosis” that I think many people can relate to. 1. Onset of fibromyalgia symptoms. This is when weird stuff starts to happen. I did my best to explain each symptom away and pretty much ignore what was going on while I waited for it to go away. 2. Self-diagnosis. It didn’t go away, so I hit the Google, and of course, any time we look online for a diagnosis, we inevitably have cancer and AIDS. We really need to skip this step and let a professional do their job.* 3. Medical testing. Yes, I went to a doctor. This part was awful. It took three different phlebotomists four tries to draw my blood and I hate needles to begin with. The tests yielded no answers. I was very frustrated and hated using my limited time off work being actually sick. I went to another doctor, whom I saw regularly, and they still gave me no answers. 4. Diagnosis. It was when I regressed back to stage 2 and determined that I had chronic fatigue syndrome that my rheumatologist listened and diagnosed me with both chronic fatigue syndrome and fibromyalgia. (*I know I say skip stage 2, but in my case, I did have to do some of my own work. “Let a professional do their job” only works if they’re actually doing their job.) Now I had answers. I had words at last. I had a picture of my future. I could begin the grieving process and figure out the next steps. 5. Treatment selection. Now that I had a diagnosis, I could treat it. My rheumatologist started me on medication, which I hated, and I stopped taking it and also stopped going to the rheumatologist because I didn’t like how she pressured me to try that medicine. I currently manage my fibromyalgia with vitamins and supplements, diet, exercise, sleep, and joy. Things change as I learn more about what’s available and more about myself. This stage is lifelong. What Went Wrong in My Medical Care I feel faulted that my diagnosis took a year, and still, I hear stories from people whose diagnoses take decades. There is a shortage of medical professionals who specialize in fibromyalgia care; there is a shortage of belief in fibromyalgia and chronic fatigue syndrome within the medical community. There is a shortage of giving-a-rats-behind within the medical community when it comes to conditions that affect predominantly women. So I got whom I got. When she finally diagnosed me, that day I arrived with a self-diagnosis, she said to me, “Why didn’t you tell me all this before?” referring to the symptoms I reported … and had reported all along. That made me angry. Then she shoved me into her box of what she believed fibromyalgia to be — a one-size-fits-all box — and insisted I take a medication for the pain. I told her my pain wasn’t that bad. I pleaded for help with the fatigue and brain fog. I refused to take the medication at first; then she guilted me into it at my next appointment. The side effects were (wait for it…) fatigue and brain fog! For consistently not listening to me, for not bothering to know me as a person and my fibromyalgia as my unique version of it, I never went back. How I’m Thriving Now I created the Splat System to help me not just talk about my fibro and CFS but also to live a better life with routines and self-care and enable other people to help and support me. I’ve self-taught a lot about nutrition and try to eat and do the things that make my body feel as best as it can. I’ve learned to replace things I’ve lost with new joys. I started my own business (teaching about invisible disabilities!) so I have total control over my work life and can accommodate my disability. And sometimes I feel sorry for myself because it does suck to have these conditions, and I cry, and that’s OK.

The 5 Stages of Fibromyalgia Diagnosis and What Happens Next

It started with some tenderness in two or three knuckles. A couple of days later, my hands were definitely hurting and my elbows were sore. A couple of days after that, I felt it in my shoulders, too. Then suddenly, my whole body just ached, the way it does if I have a very bad cold, and I was so, so tired. I remember family visited to help me with a home repair and I could barely move from the couch. That’s when we all recognized that something was definitely not right. It was a full year later when I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, and what an awful year that was. What It’s Like to Be Undiagnosed I didn’t have words to talk about it. It was simply “I have this mysterious thing going on” followed by me listing all these invisible symptoms. I had even less credibility than I do now. People just didn’t believe me. I didn’t know how to treat it. How can I treat what I don’t know I have? I didn’t have my people, my community of those who are living through a similar thing, because I didn’t know what my thing was. Instead of worrying about the one (or, as it turns out, two) diagnoses that I had, I was constantly worrying about the multitude of diagnoses it could possibly be. Until I knew which ones I had, it was like I had them all! I was burning time off at work going to all the appointments, and still no answers. I was frustrated. It was more loss. I couldn’t begin the acceptance and grieving process, because I had no clear picture of what I was supposed to grieve. The Stages of Diagnosis In hindsight of my experience, I identified what I call the “five stages of diagnosis” that I think many people can relate to. 1. Onset of fibromyalgia symptoms. This is when weird stuff starts to happen. I did my best to explain each symptom away and pretty much ignore what was going on while I waited for it to go away. 2. Self-diagnosis. It didn’t go away, so I hit the Google, and of course, any time we look online for a diagnosis, we inevitably have cancer and AIDS. We really need to skip this step and let a professional do their job.* 3. Medical testing. Yes, I went to a doctor. This part was awful. It took three different phlebotomists four tries to draw my blood and I hate needles to begin with. The tests yielded no answers. I was very frustrated and hated using my limited time off work being actually sick. I went to another doctor, whom I saw regularly, and they still gave me no answers. 4. Diagnosis. It was when I regressed back to stage 2 and determined that I had chronic fatigue syndrome that my rheumatologist listened and diagnosed me with both chronic fatigue syndrome and fibromyalgia. (*I know I say skip stage 2, but in my case, I did have to do some of my own work. “Let a professional do their job” only works if they’re actually doing their job.) Now I had answers. I had words at last. I had a picture of my future. I could begin the grieving process and figure out the next steps. 5. Treatment selection. Now that I had a diagnosis, I could treat it. My rheumatologist started me on medication, which I hated, and I stopped taking it and also stopped going to the rheumatologist because I didn’t like how she pressured me to try that medicine. I currently manage my fibromyalgia with vitamins and supplements, diet, exercise, sleep, and joy. Things change as I learn more about what’s available and more about myself. This stage is lifelong. What Went Wrong in My Medical Care I feel faulted that my diagnosis took a year, and still, I hear stories from people whose diagnoses take decades. There is a shortage of medical professionals who specialize in fibromyalgia care; there is a shortage of belief in fibromyalgia and chronic fatigue syndrome within the medical community. There is a shortage of giving-a-rats-behind within the medical community when it comes to conditions that affect predominantly women. So I got whom I got. When she finally diagnosed me, that day I arrived with a self-diagnosis, she said to me, “Why didn’t you tell me all this before?” referring to the symptoms I reported … and had reported all along. That made me angry. Then she shoved me into her box of what she believed fibromyalgia to be — a one-size-fits-all box — and insisted I take a medication for the pain. I told her my pain wasn’t that bad. I pleaded for help with the fatigue and brain fog. I refused to take the medication at first; then she guilted me into it at my next appointment. The side effects were (wait for it…) fatigue and brain fog! For consistently not listening to me, for not bothering to know me as a person and my fibromyalgia as my unique version of it, I never went back. How I’m Thriving Now I created the Splat System to help me not just talk about my fibro and CFS but also to live a better life with routines and self-care and enable other people to help and support me. I’ve self-taught a lot about nutrition and try to eat and do the things that make my body feel as best as it can. I’ve learned to replace things I’ve lost with new joys. I started my own business (teaching about invisible disabilities!) so I have total control over my work life and can accommodate my disability. And sometimes I feel sorry for myself because it does suck to have these conditions, and I cry, and that’s OK.

The 5 Stages of Fibromyalgia Diagnosis and What Happens Next

It started with some tenderness in two or three knuckles. A couple of days later, my hands were definitely hurting and my elbows were sore. A couple of days after that, I felt it in my shoulders, too. Then suddenly, my whole body just ached, the way it does if I have a very bad cold, and I was so, so tired. I remember family visited to help me with a home repair and I could barely move from the couch. That’s when we all recognized that something was definitely not right. It was a full year later when I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, and what an awful year that was. What It’s Like to Be Undiagnosed I didn’t have words to talk about it. It was simply “I have this mysterious thing going on” followed by me listing all these invisible symptoms. I had even less credibility than I do now. People just didn’t believe me. I didn’t know how to treat it. How can I treat what I don’t know I have? I didn’t have my people, my community of those who are living through a similar thing, because I didn’t know what my thing was. Instead of worrying about the one (or, as it turns out, two) diagnoses that I had, I was constantly worrying about the multitude of diagnoses it could possibly be. Until I knew which ones I had, it was like I had them all! I was burning time off at work going to all the appointments, and still no answers. I was frustrated. It was more loss. I couldn’t begin the acceptance and grieving process, because I had no clear picture of what I was supposed to grieve. The Stages of Diagnosis In hindsight of my experience, I identified what I call the “five stages of diagnosis” that I think many people can relate to. 1. Onset of fibromyalgia symptoms. This is when weird stuff starts to happen. I did my best to explain each symptom away and pretty much ignore what was going on while I waited for it to go away. 2. Self-diagnosis. It didn’t go away, so I hit the Google, and of course, any time we look online for a diagnosis, we inevitably have cancer and AIDS. We really need to skip this step and let a professional do their job.* 3. Medical testing. Yes, I went to a doctor. This part was awful. It took three different phlebotomists four tries to draw my blood and I hate needles to begin with. The tests yielded no answers. I was very frustrated and hated using my limited time off work being actually sick. I went to another doctor, whom I saw regularly, and they still gave me no answers. 4. Diagnosis. It was when I regressed back to stage 2 and determined that I had chronic fatigue syndrome that my rheumatologist listened and diagnosed me with both chronic fatigue syndrome and fibromyalgia. (*I know I say skip stage 2, but in my case, I did have to do some of my own work. “Let a professional do their job” only works if they’re actually doing their job.) Now I had answers. I had words at last. I had a picture of my future. I could begin the grieving process and figure out the next steps. 5. Treatment selection. Now that I had a diagnosis, I could treat it. My rheumatologist started me on medication, which I hated, and I stopped taking it and also stopped going to the rheumatologist because I didn’t like how she pressured me to try that medicine. I currently manage my fibromyalgia with vitamins and supplements, diet, exercise, sleep, and joy. Things change as I learn more about what’s available and more about myself. This stage is lifelong. What Went Wrong in My Medical Care I feel faulted that my diagnosis took a year, and still, I hear stories from people whose diagnoses take decades. There is a shortage of medical professionals who specialize in fibromyalgia care; there is a shortage of belief in fibromyalgia and chronic fatigue syndrome within the medical community. There is a shortage of giving-a-rats-behind within the medical community when it comes to conditions that affect predominantly women. So I got whom I got. When she finally diagnosed me, that day I arrived with a self-diagnosis, she said to me, “Why didn’t you tell me all this before?” referring to the symptoms I reported … and had reported all along. That made me angry. Then she shoved me into her box of what she believed fibromyalgia to be — a one-size-fits-all box — and insisted I take a medication for the pain. I told her my pain wasn’t that bad. I pleaded for help with the fatigue and brain fog. I refused to take the medication at first; then she guilted me into it at my next appointment. The side effects were (wait for it…) fatigue and brain fog! For consistently not listening to me, for not bothering to know me as a person and my fibromyalgia as my unique version of it, I never went back. How I’m Thriving Now I created the Splat System to help me not just talk about my fibro and CFS but also to live a better life with routines and self-care and enable other people to help and support me. I’ve self-taught a lot about nutrition and try to eat and do the things that make my body feel as best as it can. I’ve learned to replace things I’ve lost with new joys. I started my own business (teaching about invisible disabilities!) so I have total control over my work life and can accommodate my disability. And sometimes I feel sorry for myself because it does suck to have these conditions, and I cry, and that’s OK.

The 5 Stages of Fibromyalgia Diagnosis and What Happens Next

It started with some tenderness in two or three knuckles. A couple of days later, my hands were definitely hurting and my elbows were sore. A couple of days after that, I felt it in my shoulders, too. Then suddenly, my whole body just ached, the way it does if I have a very bad cold, and I was so, so tired. I remember family visited to help me with a home repair and I could barely move from the couch. That’s when we all recognized that something was definitely not right. It was a full year later when I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, and what an awful year that was. What It’s Like to Be Undiagnosed I didn’t have words to talk about it. It was simply “I have this mysterious thing going on” followed by me listing all these invisible symptoms. I had even less credibility than I do now. People just didn’t believe me. I didn’t know how to treat it. How can I treat what I don’t know I have? I didn’t have my people, my community of those who are living through a similar thing, because I didn’t know what my thing was. Instead of worrying about the one (or, as it turns out, two) diagnoses that I had, I was constantly worrying about the multitude of diagnoses it could possibly be. Until I knew which ones I had, it was like I had them all! I was burning time off at work going to all the appointments, and still no answers. I was frustrated. It was more loss. I couldn’t begin the acceptance and grieving process, because I had no clear picture of what I was supposed to grieve. The Stages of Diagnosis In hindsight of my experience, I identified what I call the “five stages of diagnosis” that I think many people can relate to. 1. Onset of fibromyalgia symptoms. This is when weird stuff starts to happen. I did my best to explain each symptom away and pretty much ignore what was going on while I waited for it to go away. 2. Self-diagnosis. It didn’t go away, so I hit the Google, and of course, any time we look online for a diagnosis, we inevitably have cancer and AIDS. We really need to skip this step and let a professional do their job.* 3. Medical testing. Yes, I went to a doctor. This part was awful. It took three different phlebotomists four tries to draw my blood and I hate needles to begin with. The tests yielded no answers. I was very frustrated and hated using my limited time off work being actually sick. I went to another doctor, whom I saw regularly, and they still gave me no answers. 4. Diagnosis. It was when I regressed back to stage 2 and determined that I had chronic fatigue syndrome that my rheumatologist listened and diagnosed me with both chronic fatigue syndrome and fibromyalgia. (*I know I say skip stage 2, but in my case, I did have to do some of my own work. “Let a professional do their job” only works if they’re actually doing their job.) Now I had answers. I had words at last. I had a picture of my future. I could begin the grieving process and figure out the next steps. 5. Treatment selection. Now that I had a diagnosis, I could treat it. My rheumatologist started me on medication, which I hated, and I stopped taking it and also stopped going to the rheumatologist because I didn’t like how she pressured me to try that medicine. I currently manage my fibromyalgia with vitamins and supplements, diet, exercise, sleep, and joy. Things change as I learn more about what’s available and more about myself. This stage is lifelong. What Went Wrong in My Medical Care I feel faulted that my diagnosis took a year, and still, I hear stories from people whose diagnoses take decades. There is a shortage of medical professionals who specialize in fibromyalgia care; there is a shortage of belief in fibromyalgia and chronic fatigue syndrome within the medical community. There is a shortage of giving-a-rats-behind within the medical community when it comes to conditions that affect predominantly women. So I got whom I got. When she finally diagnosed me, that day I arrived with a self-diagnosis, she said to me, “Why didn’t you tell me all this before?” referring to the symptoms I reported … and had reported all along. That made me angry. Then she shoved me into her box of what she believed fibromyalgia to be — a one-size-fits-all box — and insisted I take a medication for the pain. I told her my pain wasn’t that bad. I pleaded for help with the fatigue and brain fog. I refused to take the medication at first; then she guilted me into it at my next appointment. The side effects were (wait for it…) fatigue and brain fog! For consistently not listening to me, for not bothering to know me as a person and my fibromyalgia as my unique version of it, I never went back. How I’m Thriving Now I created the Splat System to help me not just talk about my fibro and CFS but also to live a better life with routines and self-care and enable other people to help and support me. I’ve self-taught a lot about nutrition and try to eat and do the things that make my body feel as best as it can. I’ve learned to replace things I’ve lost with new joys. I started my own business (teaching about invisible disabilities!) so I have total control over my work life and can accommodate my disability. And sometimes I feel sorry for myself because it does suck to have these conditions, and I cry, and that’s OK.

How 'Passing' as Able-Bodied Can Harm Disabled People

The term “passing” refers to any person trying to identify with a group other than their own. It’s typically done under negative social pressure to “pass” as a more homogeneous, mainstream, and popularly-accepted identity for reasons of safety, to avoid being subjected to discrimination, and/or to make people around them more “comfortable.” It can be a draining and tragically inauthentic way to live. Disabled people sometimes try to pass as able-bodied. People with hidden disabilities can often entirely pass, but it’s not easy. We tap into physical energy and emotional resources that are already in short supply at the expense of the rest of our day, or the rest of our week. I can pass as able-bodied and go out with my friends, but the next day I’m not going to be able to work nearly as much as I would if I stayed home the evening before. Even people with visible disabilities try to pass. During my recent back injury, I tried to walk with a more normal gait, even though it increased my pain. I have a friend who built his wheelchair so he sits as high as possible, to be closer to the height of people who are standing. We will go out of our way to be prepared for upcoming events, even if it means using up a day to visit a place ahead of time so we’re more comfortable and less “disabled” when we’re there with our friends or family. So many of us smile through our discomfort, pain, fatigue and nervousness just to make it easier on those around us. I will pretend to not be interested in ideas or events when the truth is I’d love to go but I worry I might not be able to handle sitting or standing or the loud noise. I just don’t want to say that out loud. It ruins the illusion. As the awareness advocate that I am, I realize I need to suck it up and stop making fake excuses. I need to stop passing and be my authentic disabled self. By the way, if you’ve noticed me using the word “disabled” instead of person-first language (“person with disabilities”), it’s because many of us are taking the word disabled back. It’s because I believe person-first language does more to help able-bodied people feel more comfortable than it does to make us more comfortable. What it’s actually doing is reinforcing the pressure on us to minimize or even hide our disabilities. To pass. So yes, I’m doing the work to be more authentic. It’s a process. For now, I can at least make you aware. I can spotlight that you might be trying to pass, too. We can let others know that passing is something disabled people may try to do. What can you do, beyond mere awareness, to help? That’s as simple as saying genuinely, “You never have to pretend around me.” You never have to pretend around me.

The 13 Things I Feel When Chronic Illness Makes Me Cancel Plans

Oh, the things we do with the English language, and being a creative with a degree in English, it often downright delights me. Some of our current linguistic trends, carried by the cool kids, include saying “feels” rather than “feelings” and furthermore calling it a place. That hit me in the feels . Us cool kids (yeah, I’ll go ahead and claim it) also like to tack “all the” in front of things in lieu of “many,” “much,” “a lot of,” etc. I shall eat all the puddings. Combine these, and you replace “a lot of emotions” with “all the feels.” I set this up to say that when I have to cancel plans because of my chronic illness, it gives me all the feels. Specifically, though, I can list 13 different emotions I experience when I have to cancel: Scared. About my future quality of life. Guilty. Like I’m making an excuse or lying, even though I’m not. Remorseful. Like I’m letting you down. Frustrated. That I don’t have control. Angry. That I’m sick. Sad. That I’m missing out. Anxious. About rescheduling and not overpacking my calendar. Worried. That you’ll think I’m flaky, lazy, selfish, or passing you up for something “better.” Nervous. That you won’t invite me anymore. Self-conscious. About what you might think of me when I do feel better, which could be as soon as the same day, and end up doing some activity and you find out about it. Ashamed. About not “contributing,” feeling that I have no value. Jealous. That you still can. Embarrassed. That this is a thing I do. I understand with my brain that it’s not my fault, and I truly am doing my best, but it’s still a battle to fend off all these negative emotions, every time. I just wanted you to know. P.S. Check out my system for talking about our chronic illnesses.

The 13 Things I Feel When Chronic Illness Makes Me Cancel Plans

Oh, the things we do with the English language, and being a creative with a degree in English, it often downright delights me. Some of our current linguistic trends, carried by the cool kids, include saying “feels” rather than “feelings” and furthermore calling it a place. That hit me in the feels . Us cool kids (yeah, I’ll go ahead and claim it) also like to tack “all the” in front of things in lieu of “many,” “much,” “a lot of,” etc. I shall eat all the puddings. Combine these, and you replace “a lot of emotions” with “all the feels.” I set this up to say that when I have to cancel plans because of my chronic illness, it gives me all the feels. Specifically, though, I can list 13 different emotions I experience when I have to cancel: Scared. About my future quality of life. Guilty. Like I’m making an excuse or lying, even though I’m not. Remorseful. Like I’m letting you down. Frustrated. That I don’t have control. Angry. That I’m sick. Sad. That I’m missing out. Anxious. About rescheduling and not overpacking my calendar. Worried. That you’ll think I’m flaky, lazy, selfish, or passing you up for something “better.” Nervous. That you won’t invite me anymore. Self-conscious. About what you might think of me when I do feel better, which could be as soon as the same day, and end up doing some activity and you find out about it. Ashamed. About not “contributing,” feeling that I have no value. Jealous. That you still can. Embarrassed. That this is a thing I do. I understand with my brain that it’s not my fault, and I truly am doing my best, but it’s still a battle to fend off all these negative emotions, every time. I just wanted you to know. P.S. Check out my system for talking about our chronic illnesses.