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Please Don't Tell Me How To Feel When My Pain Flares Up


When I sit down and write to advocate for my illnesses, I feel this pressure that I always need to be positive. That if I’m not, that if I’m not seeing the positive in the things I’m still able to do, that well, I’m just not grateful or positive enough.

That is the power of stigma. And let me tell you, I am tired of it.

I wasn’t diagnosed with lupus, fibromyalgia, Raynaud’s disease or Sjogren’s syndrome until I was 28. But for years, I struggled medically, not knowing or understanding why. I cannot say that having answers or diagnoses has made it any easier. I feel some days, it’s made it worse. You’d think having an answer means having a treatment, treatment makes you better, doctor’s appointments end, life finally moves on. As someone who also has post-traumatic stress disorder, I unfortunately knew better once I was diagnosed.

That is not the case with autoimmune disorders. I am trapped in this body that one day, or for one extended period of time cooperates, and then for a month or so does nothing that I need it to. It lets me down. It tests my patience. It pushes me into hole that I can’t scramble out of. And a lot of the time, that hole is very dark.

After my diagnosis, I mourned the person I used to be. I still do. It is even more difficult to accept the life you need to adjust to when you’re in a flare-up. Flare-ups for me are vicious. I will never be able to explain the pain that is shooting through my body every day.

Currently I cannot eat solid food, and have been on a liquid diet for over a month. I have been trying to keep up with going to the gym, because if I don’t my joint pain is even worse, but even when I’m there I feel like I just can’t do anything. I cannot sleep because I lay in bed and sob from the pain. I cry because I’m alone. I am that type of tired you just can’t explain to anyone. My Methotrexate, which I take twice a week, is making me more sick than usual. I don’t know why. I’ve started missing work because of it. And that means I’m disappointing people.

My body disappoints me. In turn, it disappoints everyone else. In the end, there are days where I lay in bed and I can’t imagine going on like this anymore.

I have incurable, painful diseases, in which the treatments are less than ideal and are limited. I have lost friends because I am “too much.” I am no longer the friend to people I want to be. My life at times is overcome with doctors appointments and medical bills.

I feel when people ask me what’s going on with me, they don’t want to hear what truly is. They already know I’m chronically ill. I’ll be this way forever. So, why talk about it? I feel burdensome to others because the truth is, I feel burdensome to myself.

I never asked to have to slap on a smile every day, to go to work, to grind as hard as I can because I have to make sure I keep my job because I know I’ll miss time. If I don’t seem like I’m worth it to my peers and supervisors, I am so fearful I’ll be let go.

I never asked to be in pain every day. I never asked for scary diagnostic tests, to feel like I’m sitting around waiting for bad news every six months that I walk in my local diagnostic center. I never asked to have my appearance change so drastically that sometimes looking in the mirror makes me want to smash it. I can’t stand the person looking back at me because my hair that I’ve lost from my treatment growing back isn’t my hair, and yet I can’t get anyone to truly understand how awful that feels.

But everyone wants me to be positive. Because apparently I’m going to “feel better.”

There is no better. There’s flaring, and there’s not flaring. And people need to understand the emotions we feel when we flare. Being in pain every day does something to you. It eats at you and tests you in ways you didn’t think you could be tested. And I am mad because I didn’t ask for it.

I didn’t ask to be sad over my bodies, to not only feel constantly disappointed by them, but also by people’s reactions to it. Sometimes, I get to be angry. Sometimes, I get to be sad.

I ask people to please not feel that they get to dictate how I feel, or how I react to my flare because they don’t understand what I am feeling inside my own body. They may not understand the depression that comes with losing friends, and ultimately feeling as though you lost yourself to illness.

Today, and this month, I am flaring. And ultimately, I am mourning. People are just going to have to be OK with that, because sometimes, things are just bad.

We as a society need to stop glazing over negative moments to fill them with unauthentic, false-positive, “hope” filled candy coated, sugary motivational quotes that make you feel better.

I never said I lost hope.

If you or someone you know needs help, visit our suicide prevention resources page.

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What a Bad Day With Fibromyalgia Means


I’m a writer. It’s what I do. I write fictional pieces because I envision these worlds of make believe so clearly, and the characters within them with such detail, it’s easy to put them down on the screen to share with the world. But I can’t explain what it feels like to be trapped in a body encumbered by the total agony of fibromyalgia. Why does it hurt this much?

In the past 18 months, I’ve gone from using walking sticks and crutches to needing a wheelchair outside of the house. My hips and legs no longer give me the support they once did. My muscles and joints hurt on a constant basis, the only difference is the type of pain and the severity. Is my spine made of glass?

A good day with fibro means I have the spoons to see friends, go out, get some basic tasks done. If I’m lucky I have a few of these in a row. A bad day means I’m lying on my bed too sore and too fatigued to even sit up, and turn on my laptop to watch Netflix. Today is the latter and I know I need to go outside to get food, so my sister is having to help me get up and get dressed. Every little task is taking four times as long and every little movement sends a ripple effect through my body. Why are my thighs burning after sleeping?

My beautifully creative brain is trying to rush off to those lands of science fiction its created, whilst my body is screaming for my nerves to stop misfiring and sending pain signals every second of the day. Hair shouldn’t hurt, should it?

Being dressed is an accomplishment, even though I had help with it. Part of me remembers with envy the days when taking an hour to get dressed was because I couldn’t find something I liked the look or feel of for that day. These days, if it takes an hour, it’s because for every item of clothing I put on, I need to take a rest. Does it really matter if my socks don’t match?

A trip to the shops after getting dressed on a day like today means that I’m exhausted and I want to just collapse once I get home. But, I force myself to put on the laundry and I make an agreement with my sister that she’ll hang it in the airer and cook dinner so I can lie down again and watch Netflix. Why does my skin feel like it’s on fire?

The rest of the day is spent with my sister helping me back into pajamas, and lying in bed watching my favorite shows and films. I can’t really do much else. Although my characters beg to be written, and I’m desperate to work on them, I can’t sit up for longer than five minutes or stay lying down in one position for long. Is my head really this heavy?

I’ll take my meds an hour before I attempt to sleep, and I’ll pray that sleep happens and sticks tonight. If it does, then tomorrow may be an easier day and I might be able to catch up on the things I wanted to do today. But if sleep is evasive, as it often is, tomorrow will bring whatever it brings. Will this whirlwind of pain and insomnia ever stop?

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What People Don't Realize You're Doing Because You Have Fibromyalgia


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What It's Like to Be Diagnosed With Multiple Illnesses in Your 20s


There I was, sitting in my doctor’s office up on the examination table with my short legs swinging over the side while I waited on my doctor to read my lab results and explain what they meant. I finally get an explanation for the back and leg pain I’ve experienced since I was 9 years old. I would now know why my energy seemed to simply slip away from me unexpectedly. There would finally be a name for this condition that plagued me with daily pain, almost constant fatigue and an intractable melancholy I just could never shake. My doctor looked up from the thin pale folder with sympathetic eyes, knowing how many years I’ve had questions and gone through appointments with other mystified diagnosticians who sent me on my way with more questions, more confusion and less money than I had walked into their offices with. After one deep breath she says, “The test results show rheumatoid arthritis and I suspect you also have fibromyalgia.” She grabs a tissue as the tears began to instantly fall from my eyes.

Now I take a deep breath and shudder. My first words were, “So I am not ‘crazy.’ It’s not ‘all in my head.’ My pain shows up in my blood. My pain shows up on an x-ray. My pain has a name.” Oddly, first a wave of relief washed over me. Then I started to ask questions. I start to ask about what I should expect, my prognosis, the best and worst possibilities, how I should expect my life to change and treatment options. I ran headlong into this wall of information and very quickly my emotions overwhelm me and I crumple. I lean, tilt and almost physically fall as my sense of normalcy slides away. The doctor hands me some pamphlets and says to come back in a couple of weeks so we can review the rest of my blood work. I am in shock. I know this because I can’t find my way back to the nurse’s desk or the exit. A lab technician had to show me the way.

Thank God for cell phones and friends who are in standby for the aftermath of doctor visits… My best friend barely said “hello” before I dissolved into tears. One garbled sentence after sentence riddled with fear flows out. We both struggle to see the bright side or to find a silver lining. At least it’s treatable. At least I have health insurance. At least now we know there’s a diagnosis, a word for the pain, fatigue and unexplained fevers, the reason my joints ache every single day. That day changed every day that came after it.

As soon as I got home I started doing my internet research and saw that I could lose the use of my hands, my legs or even my sight from rheumatoid arthritis. I realized the digestive problems I have experienced since childhood are related to the fibromyalgia. I was relieved to find that those days when I had a word on the tip of my tongue all day but couldn’t remember it were due to the brain fog that comes with fibromyalgia. It finally made sense that my 28-year-old body felt so much older!

Along with relief came anger. This huge wave of anger washed over for every time I was told I was lazy as a kid, for every time a doctor told me to lose weight or that I was just stressed out. The anger grew as I recalled the countless hours of fear and anxiety I spent waiting in doctor’s offices. Being sick without a proper diagnosis or treatment makes you feel vulnerable and powerless in a way that can’t be expressed with words. Illness is as human a condition as any of us will ever experience.

Now, looking back at that day over a decade later, I know that no article, no blog post, no words from even the most educated and caring of doctors could have prepared me for the journey ahead. There are days when I am sick of taking my meds. There are days when I just want to dance and sway to one song after the other without worrying about my back, knees or hips. And there are days when I don’t make it out of bed and I am so grateful for food delivery. Yet I’ve lived my dream of moving to New York City and living in Harlem. I traveled through eight cities in Northern Italy while on tour when I was a back-up singer in a soul band. I’ve been married and divorced. I continue working in a field I enjoy. The diagnosis altered my life but it didn’t end it. Some days I limp. Some days I strut. But every day I slay!

woman wearing red lipstick and smiling

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hands typing on laptop with text 18 things people with fibromyalgia want to post on facebook but don't

18 Things People With Fibromyalgia Want to Post on Facebook, but Don't


Sometimes it may seem like your friends are using Facebook as a “highlight reel,” only showing the best parts of their lives. So it’s understandable that if you have fibromyalgia, you may not always share the difficult truths about what your days are like. It can be hard to share when you’re not sure if you’ll get the supportive responses you hoped for.

To reveal the important truths people should know about their loved ones with fibromyalgia, we asked our Mighty community to share a post they want to write on Facebook, but don’t. Even if those with fibromyalgia “seem fine” on the outside, these are the challenges they may be dealing with behind the scenes. Friends, reach out and let them know you support them.

Here’s what the community told us:

1. “Please stop comparing me to other ill people. I can’t handle the stress of not feeling like I’m ‘sick’ enough to be important or noticed for my illness. I’m constantly apologizing for an illness that isn’t my fault, and I shouldn’t have to.”

2. “I’m tired! I’m tired of being sick, I’m tired of being in pain, I’m tired of feeling like shit, I’m tired of feeling guilty, I’m tired of not being normal, I’m tired of doctor’s visits, I’m tired of blood work, I’m tired of ‘your test came back normal,’ I’m tired of ‘try this medication,’ I’m tired of side effects, I’m tired of not feeling better! I’m just tired!”

3. “I barely talk about it. I’m in pain 24/7. There is no moment that I’m not in pain. If you see a post where I’m saying I’m having an awesome day and I’m playing in the garden with the rabbits – I’m in pain.  If I’m posting a picture of my dog – I’m in pain. If I’m just sharing a link – I’m in pain. I’m likely posting as normal like I am now, but in reality I am curled up on the sofa feeling pain in so many places it blends to a blur.”

4. “I’m exhausted. A lot of people don’t realize the difference between constant exhaustion and just being tired. Also, [I don’t post] anything about fibromyalgia really because some people still don’t believe it’s a real illness.”

5. “I actually am trying to be better about being honest with how I really feel. But the truth is I can’t even put it into words when I try. I feel like saying ‘I hurt’ or ‘I’m tired’ just don’t cut it. The honest truth is lately every inch of my body hurts. Even trying to give me a back rub is painful and makes me want to cry. I feel like when I say ‘I hurt’ it sounds too much like what everyone feels, everyone has aches and pains, but this is so much more than just a little soreness.”

6. “I know I’m supposed to lose weight and move more, but sometimes I’m just in too much pain and doing anything hurts, but no one understands. I appreciate your advice, but just walk a day in my shoes.”

7. “People need to stop trying to solve my illness. We are doing everything we can. I have great doctors. We don’t even have a clear cause and etiology of fibro. There are currently not many solutions.”

8.I’m constantly asking myself, ‘Would a future employer be able to see this post and my acknowledgement of having a disability and use that against hiring me?’ Though it’s illegal, they can always use ‘alternative facts’ or reasons to not hire but there may be some truth in [that they didn’t] hire someone with a disability.”

9. “[I don’t post] the fact that I have it in the first place. I’ve gotten all of the typical hurtful responses to fibro from the people closest to me who I have told, who misunderstand or underestimate my illness, so I know I will get those kinds of responses even worse from Facebook friends. So I don’t even share about it on social media. I think at this point I would rather just keep it to myself than continue to bear that frustration.”

10. “I’m tired of being interrogated when I call my doctor to refill my pain medicine. Even though I only call when I’m desperate, even though I’ve agreed to a lower dose, I am treated as if I’m drug seeking! I shouldn’t have to fight to keep my pain manageable enough so I can live my life.”

11. “Although I look like a regular 25-year-old, I’m not. Don’t judge me when I squat in the supermarket to relieve my back pain and make sure I don’t faint from exhaustion. Don’t judge me when I complain about pain — if I’m complaining its really bad since I have it 24/7. Don’t judge me for pulling out of an evening out last-minute. Don’t judge me for struggling to find work because I have to be honest and tell people about my problems. I guess overall I just want people to understand there is a real problem and to let me deal with it the best I can.”

12. “I wish healthy people would stop asking me to take this, take that, push myself on and on! After all these years with fibro and chronic severe back pain, under three specialists’ care, believe me we’ve tried everything!”

13. “I am 6 feet tall, 280 pounds — when I tell you that you are hurting me when you are just resting your hand and arm on my shoulder, it hurts and I am not a big baby.”

14. “I feel guilty for having to explain to my girls why I’m just too exhausted to cook tea or do something other than watch movies. I miss out on friendships and have to cancel plans. I would love to go to work and actually have a life. No one would choose to live the way we do.”

15. “I’m not making it up. I really want to go out and be with friends and family. I miss having fun.”

16. “Some days there is just no being positive. I’m not swimming in my own self-pity, it’s just that this sucks. There is no good part. There is no silver lining or lesson. There is no reason for this. It is just how things are. This is not how I imagined my life panning out. But now that this is my normal, I’m doing my best. Some days, that means not being positive and expressing how I really feel.”

17. “Pain takes over my life and limits my ability to do day-to-day tasks. When I post something like this and then go about doing my tasks, people assume I am making a big deal of the pain and that it is a natural progression of the human body, like menopause or aging.”

18. “I had such a good time today… now I will feel the effects for the next week or so.”


“

Why I Don't Consider My Fibromyalgia to Be a Stroke of 'Bad Luck'


My last post garnered such an overwhelming response it made my head spin – in a good way! (Check it out here.) I’m sure some of you thought, Boy, I wouldn’t wish this illness on anyone, or that getting this illness is some serious bad luck – but there’s more to that story.

I must admit, for years I wondered why the powers that be chose for me to have fibromyalgia, chronic pain, chronic fatigue syndrome and Sjögren’s syndrome. The feelings of isolation, pain and being removed from the world and the constant testing of new treatments was overwhelming and exhausting. It was impossible not to think, “Why me?” when things got really bad – when my hands were too stiff to hold a spoon or I couldn’t get up a flight of stairs.

Fast forward nine years and, truth be told, my illnesses have actually had a lot of benefits for me, my family and my life in general.

Here are four reasons why I don’t think getting fibro was “bad luck” for me:

1. Closer relationships. I’m closer now than ever to my husband and family. When we all spend time together, it is truly quality time. Because of my condition, if I’m going to enjoy company after a long day at work, we’re going to be doing something relaxing and easy. My husband and I spend most weekends laying low at home together and I love every minute.

2. I’m a stronger employee. I go like a machine during the day. During my mandated restful weeknights and weekends I spend extra time on my work. This allows me to be available to my team, catch up on the day’s tasks and read up on the latest ideas and fresh perspectives in my field. This makes me a better leader. I don’t know that I would be where I am in my career if it wasn’t for the mandatory rest required after work.

3. I’m a healthier person. Because of my fibro, a few things aren’t up for debate. I make sure I get enough sleep, eat well and have regularly scheduled doctor appointments for prevention and maintenance. I have talked about being 90 percent vegan in a few of my previous posts and will say it again now – clean eating is a necessity with my illnesses. Sugar, caffeine, too many carbs and processed food send my body into a downward spiral and it can take a lot to get back on track.

4. I’m a patient advocate. This has been my biggest reward by far. Helping others is the best gift anyone could ask for. And let’s call a spade a spade: the chronic illness community is amazing! I strive to be the best voice I can for those of you struggling in silence and I’m honored to continue to do so.

Maybe the luck of the Irish is on my side after all… I see a pot of gold at the end of my rainbow.

What good things has your condition brought your way? Maybe you have a therapy pet or you’ve made friendships through the chronic pain community? What do you use your extra downtime for? Let us know in the comments below!

“May your thoughts be as glad as the shamrocks. May your heart be as light as a song. May each day bring you bright, happy hours that stay with you all the year long.” –Anonymous

This post originally appeared on The Huffington Post.

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