To the Person Who Thinks My Fibromyalgia Isn’t Real

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Maybe you don’t know anything about fibromyalgia and are therefore ignorant of the facts. Maybe you’ve heard of fibromyalgia, but you believe it’s a nervous condition that’s “all in the head.” Or you acknowledge there might be something “wrong” with me, but you think I exaggerate my “condition.” I’m writing this letter to you because I want to clarify any incorrect assumptions you have consider FMS (fibromyalgia syndrome) and tell you how your assumptions make me feel.

When you believe this isn’t a “real” condition and those who claim to have FMS are just looking for attention:

I assure you, I and the estimated 3 to 6 percent of the world’s population with this condition (according to the National Fibromyalgia Association) didn’t wake up one morning and decide, “You know, I’m feeling a little emotionally neglected today. I think I’ll talk my brain into coming up with a fake illness so people will take notice of me. Then we’ll collectively talk ourselves into having painful joints and sharp pains that travel around our bodies and minds, numbing fatigue, spots that make us want to scream when touched and skin that at times feels sunburned for days.”

When you suggest all I really need is exercise, a better diet or a hobby:

Well, I used to travel all up and down the streets and hills by my house. That is until I could barely walk for days afterwards. The exercise didn’t prevent my increasing FMS flare-ups, so more exercise surely won’t be the cure.

And in regards to diet, trust me, I am aware I’ve put on an extra 30 pounds over the years since the fibromyalgia really kicked in. I’m the one stuck inside this body 24/7, desperately wanting and hoping for things to change. Before you judge too harshly, my disease is a central nervous system disorder. “Central” meaning that from which everything else branches out from. It affects almost all aspects of my person. My body does not metabolize and lose weight like a healthy person’s does. In fact, I work hard to maintain the weight I’m at. I bet you dollars to donuts (no pun intended), I eat far less than you do and consume much healthier foods. Walk a mile in my shoes, my friend.

When you think I sound whiny or like a hypochondriac:

I rarely open up to people about my daily life with fibromyalgia. I assure you, I’m sharing a fraction of what it truly feels like to have FMS. I know people can get burned out by the unintentional negativity those of us with chronic illness can experience. This is why I only tell you a tiny bit, and more often than not, say absolutely nothing at all. You aren’t there to hear the cry of pain when my joints seize and I drop the full coffee cup all over the kitchen floor. You don’t see me intently trying to control my facial features so the pain I feel going up or down the stairs in the theater isn’t obvious to anyone looking. You don’t realize the times when the blood in my veins has been replaced with cement, but I get up and carry on with the routine of the day anyway.

When you want to show love and support to those with fibromyalgia or any “invisible” chronic illness:

We aren’t looking for anyone to feel sorry for us. What we really want more than anything is validation. Just to know someone believes our illness is real. That we aren’t faking or exaggerating our symptoms. We know we “look fine” on the outside, but if you could turn our inside out, you would see the true face of our condition.

Support us through your patience and presence. Remember this is not our chosen life, but the life we choose to persevere and thrive in, regardless of the unexpected path we must now walk on called “chronic illness.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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The Impact of Chronic Illness on Marriage

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Unless you were already sick before you met your partner, it’s likely that your relationship took a drastic change when you became ill. Perhaps you had a great sex life, you went out often and did lots of things together, you traveled, you enjoyed life. I know that’s how it was for us.

Then I got sick, and we discovered chronic illness can have an impact on marriage.

Since then we’ve had ups and downs. We’ve had times where I felt good enough that our lives (and sex lives) seemingly returned to normal. We put my illness out of our minds and enjoyed life again. And then, boom, there it was. Something would happen that would remind us that it wasn’t over, that I am actually chronically ill and that this illness is going to be a part of our lives forever. In the last two years I’ve been mostly healthy. Thanks to major diet and lifestyle changes, I was feeling good. The pain was minimal, if at all, and energy levels returned to normal. So did our sex life. At least for a little while. Then there was the abdominal/pelvic pain that ruined the fun. Two surgeries later and I was doing well again, and once again things looked normal for a while. And then, boom, there it was again. The the shoulder issue right on top of that = sex life dead.

Deny it as much as we might like, but I believe sex is an important part of a marriage, that it’s a need that should be fulfilled. When needs aren’t being met, we struggle, stress and fight. And that goes for any need within a relationship. There are two sides of this coin and neither of them are very pretty.

On one side you have the partner with chronic illness. They have needs, too — sexual, physical, mental, emotional, spiritual. Unfortunately, the chronic pain that comes with issues like fibromyalgia get in the way of fulfilling not just sexual needs but physical needs in general. Even a hug is often painful, so we might be left feeling physically disconnected from those we love. That physical disconnection can lead to a disconnection mentally and emotionally, as well, when our loved ones misinterpret our lack of physical contact. That is the other side of the coin. The other side is the healthy partner who, while seeing their partner is hurting, doesn’t always disconnect their partner’s pain from their own. Instead of stopping to think about how much their partner is missing out on because of the pain they’re in, they instead focus on what their partner is not giving them. This can cause them to withdraw. The withdrawal by the healthy partner often leads to a vicious circle where the unhealthy person withdraws to protect themselves, and this can lead to resentment on both sides.

So, what can you do to reduce the impact of chronic illness on marriage? It’s easier said than done. However, I’d suggest two things.

1. Every couple who finds they’re facing chronic illness should seek out a marriage counselor to help them work through and voice the feelings that come up in relation to these issues. It can be hard to talk about sex in front of someone who is basically a stranger, but it may be necessary to get a third person involved in order for both partners to be honest.

2. Find a good support group for each partner. Not only should the partner with chronic illness be involved in a good support group of others who share the illness and can relate to what they are going through, but the healthy partner should be actively involved in a “caregiver” support group with other partners who can identify with the struggles he (or she) is going through as well.

It’s important that each spouse try to understand their partner’s point of view. The healthy spouse needs to take time to realize that the ill partner is missing everything they are missing, too. Yes, at times we might be so ill that we don’t think about all we are missing (and sometimes that’s a good thing), but more often, we know what we are missing and it can be depressing. On the other hand, those of us who are ill need to take some time to think about what it must be like for our partner, as well. We also have to remind ourselves that they obviously love us. While we don’t have the choice to walk away from our chronic illness, they do. The fact that they stay says a lot about them, and about how much they really do love us.

Follow this journey on Counting My Spoons.

Lead photo source: Thinkstock Images

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Why I’m Showing These Private Photos of My Life With Chronic Illnesses

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I want to invite you in to my life. This will be extremely difficult for me. I’m a private and sometimes quiet person, but what I have to show you is important. It’s a glimpse into the life of someone who is living with rheumatoid arthritis (RA) and fibromyalgia. I also have four children and one of them has a disease called tuberous sclerosis complex. He is multi-disabled. His secondary diagnoses include epilepsy and autism.

I want to capture my life in pictures to put a face to invisible diseases. I want to give a voice to others who also struggle silently. Many people, like my family, face difficult daily challenges, so I hope my story will serve as a reminder to be kind to others. You never know what challenges someone else is facing.

This is how you might see me in public on a typical day. (I say “might” because with four kids, I don’t always have a lot of time to apply make-up and fix my hair before I leave the house.)

Selfie of a woman with full makeup, and a colorful stripped shirt.

Yes, I “look normal” yet I am very different. Here is life from my perspective:

Table with medical supplies.

On this day, I had another rheumatologist appointment. I was brought back to the exam room and four needles were arranged neatly on a tray. I have never been too excited about needles and this had me nervously thinking about the five injections I had already received since the beginning of the year. I suspected these syringes had something to do with the problem of pain in my shoulders that my doctor and I discussed at my last appointment. I tried to prepare myself mentally for what was to come. Waiting 30 minutes gave me time to doubt accepting these additional injections, but I reluctantly elected to take them in hopes of increased mobility. Unfortunately, it landed me in an ambulance with a suspected allergic reaction. It also altered how I could be treated in the future.

A few short weeks later, the only positive side effects of my shots had worn off. The anti-inflammatory properties were gone and my RA took over. I was experiencing my first RA flare. I could describe it simply by saying, “It hurt to move,” but I was unprepared for this kind of pain. I was shocked, reeling in pain from the smallest movements. Fibromyalgia gave me a secondary blow as it aggravated the area around the joint effected by RA.

In a matter of weeks, I went from a 34-year-old mother of four, who was keeping up with her children, to a woman unrecognizable to even myself. I revisited the rheumatologist and began physical therapy in hopes of any relief. At the advice of my physical therapist, I purchased a rollator (a rolling walker). It helped with my mobility when the pain made it too difficult. My hands hurt so bad that I could hardly grasp the handles. My body retaliated against me, and it hurt to stand up straight.

A woman leans over, she's having a hard time talking.

At the peak of my flare, the morning hours gave me the most pain, and I had difficulty getting out of bed so my husband began to help me.

Husband helps his wife get out of bed.

He helped lift me to my rollator.

Husband helps his wife to her walker.

And had to help me on and off the toilet.

My knee was so full of fluid that I couldn’t get my leg over the bathtub. My hands hurt so bad that I couldn’t wash my hair, let alone squeeze the shampoo bottle, without assistance. He waited outside the shower to help me wash my body and hair and help me in and out of the tub.

Each day I would carry on and each night I would cry out and wonder, “Where is my life?”

Distressed woman holds her head in her hands.

Even my hands swelled to the point of making everyday tasks difficult, so I started a small dose of oral prednisone. I eventually had to take two a day. It has its own unpleasant side effects like sweating and mood swings, but it helped me function. It was enough to reduce some of the problematic swelling, but I was still in constant pain.

A woman's hand, swollen.

It wasn’t the only medication I was taking to help me through my flare, and there were more side effects. My legs were bruised from taking Naproxen. I was also getting headaches from my pain medication.

Bruises on a woman's legs.

My son’s epilepsy didn’t wait for me to feel better. Sometimes he falls at the onset of a seizure. Afterwards, his limbs are immobilized and he’s frequently exhausted. His seizures are physically demanding for both of us. I often have to lift, hold or carry him to a safe place before and/or after a seizure. On this day, he had a two-minute seizure that took over his body. He couldn’t move so he begged me to lay him in bed. It was hard for me to carry his worn body to his bed. We were both exhausted. It was all too much and I sobbed as he lay there.

A bunk bed with a tent set up on the bottom bunk.

It was no surprise that the physical demands of motherhood and my son  with special needs began to take a toll. The pain became intense in my shoulder so the doctor ordered an MRI. I found out that RA had torn my shoulder to shreds. The six-paragraph explanation made for interesting reading. I refused surgery since 12 weeks of recovery and therapy isn’t realistic for a mother like me.

Blurry medical summary.

(I couldn’t even get the full summary in this screenshot.)

Another doctor appointment. Here I am waiting to see a pain management doctor. Nothing seems to be as cruel as living with chronic pain. It’s a daily struggle that I am desperately trying to conquer.

Woman sitting in the bathroom.

Another bad day for my son’s seizures. On this day, he fell to the floor before I could reach him. My leg was so full of fluid that I couldn’t get to him before the seizure knocked him to the ground. Although I was thankful he was inside and on carpet, the guilt of being unable to reach him before he fell ate away at me. He is pictured here after he finally stopped shaking. He once again had no control over his arms or legs, so I had to lift him to the chair and sit with him until he could move.

Little boy laying on the floor.

I pray for days when we cuddle just for the sake of cuddling, not because a seizure has prevented him from moving his own body.

A little boy cuddles on his mom.

I may not be strong, but I am determined to hold my baby when he needs me.

Between my child with special needs and myself, we spend a lot of time at doctors’ offices and in hospitals. What’s startling is the realization that we will never get a financial break from the burden of disease and disability. It’s disheartening when my medicine cabinet is fuller than our pantry.

Mom and son sitting in a hospital bed.

In the evenings, the kids often find me elevating my leg. Since my scare with steroid shots, I have been trying to allow my body to absorb the excess fluid naturally. It hasn’t been easy, and I often need to elevate it to find relief. I also have a cyst on the back of my knee that may never go away or so I have been told. On this night, my daughter found me, and I’m glad she did.

Woman laying in bed.

Most of the time I look like a normal mom. I snuggle with my babies.

Little boy rests his head on his mom's shoulder.

That’s my family posing for a lot of pictures during a rare trip away from home.

Family of six pose in front of water.

I can also be found at the bowling alley with my family although you won’t see me bowl. My hands hurt when I pick up a bowling ball, and my body aches when I roll a ball down the lane.

Dad helping his daughter bowl.

Although I am allowing a glimpse into my life in hopes of changing the way others perceive it, there are still those remaining invisible facets to my life that are the most important.

In the early morning hours during my RA flare, my husband got out of bed and helped me do things he never would have imagined when we wed a short 10 years ago. The jokes we made about caring for each other in old age have abruptly ended — just like my once healthy youth. And I realize in my worst moments, love and the affectionate care of my spouse intertwine much like his arms embracing my weak frame. In our darkest and hidden moments, we find love. It triumphs over every minute I wake in pain and he comes to my side, over every seizure that crushes the delicate body of our little boy and any doubt that we will make it through every last setback together.

So when I am asked, “How do you do it?” I may not always have the best answer, but I do know I will make it because I don’t have to do it alone. I know I am loved unconditionally. And this is the most important thing you should know about my story: True love is not conditional, true love sees past differences, disability, fear, sadness and disease. Love is my husband looking past my suffering and weakness and still seeing the woman he loves. Love is the confidence I have in his fulfillment of the promise to love me “in sickness and in health.”

Today, I’m getting better and working with my specialists to find the right plan to manage my disease. This will not be the last flare I will see, but the goal is to reduce the number of them, manage my pain and slow the progression of my disease.

The most important goal for my health is to be a productive wife and mother. I most likely have a lifetime of care with my son with special needs, and I want to have that privilege as long as my health allows. We also continue to work on improving his life despite his disease. It has been hard but I look forward to every moment I am given, good and bad. The good times give me hope and the bad times allow me an appreciation of them. And love sees me through it all.

Follow this journey on CrossRoadTrippers.

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A Stranger Left Her a Nasty Note. She Used It As an Opportunity.

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Sarah Metcalfe, from York, England, was making her way back to her car in the parking lot of a grocery store with her 13-year-old son when she found a note on her car, according to a post on her Facebook page.

A stranger, presumably someone who saw her park in the handicapped spot, left a note saying, “Being fat and ugly doesn’t count as disabled. Park elsewhere.”

Metcalfe, 35, lives with an invisible illness called fibromyalgia, according to Metro UK. Fibromyalgia is a chronic pain disorder that can cause fatigue and stiffness.

Although she did not have a pass to park in the handicapped space, Metcalfe was in a lot of pain that day and decided to risk it, she told The Mighty in a Facebook message. She had applied for one already and was waiting to receive it.

She posted the note to Facebook along with an open letter to the anonymous note leaver.

 

Dear shopper in Clifton Moor Tescos York car park at approx 6pm today the 30th of April 2015 who decided to leave this...

Posted by Sarah Metcalfe on Thursday, April 30, 2015

Her letter read:

Dear shopper in the Clifton Moor Tesco car park at 6:00 p.m. today, the 30th of April 2015, who decided to leave this hurtful note on my car.

I know I may not look ill, in fact I choose to smile rather than cry, but I do suffer from a long term condition that causes pain and fatigue all over my body and these symptoms are:

* Increased sensitivity to pain
* Fatigue (extreme tiredness)
* Muscle stiffness
* Difficulty sleeping
* Problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration headaches
* Irritable bowel syndrome (IBS) – a digestive condition that causes * stomach pain and bloating
* Feeling too hot or too cold – this is because you’re not able to regulate your body temperature properly
* Restless legs syndrome (an overwhelming urge to move your legs)
* Tingling, numbness, prickling or burning sensations in your hands and feet (paraesthesia)
* Anxiety and depression

Despite the fact that I work hard (I never take sick time), don’t claim disability benefits (not that it’s wrong for people that do) and I juggle work and family life, I was just having a bad and very painful day.

Please don’t be so quick to judge people by appearances. I fear one day you may say the same to someone and it could really push them over the edge. Luckily, I am open minded and know that appearances can be deceptive and that some people don’t know these things. But I would just like to say, if you’re reading this now, that it’s better to be kind than hateful. Quite frankly, you never know what kind of day a person is having and what the consequences of your actions will be.

I would be grateful if you are reading this if you could share so that there’s a chance this person reads it.

Thank you.
Sarah Metcalfe

Metcalfe has lived with eating disorders and low confidence in the past, according to Metro.

That note could have really pushed me over the edge,” she told the outlet. “That’s why I feel so strongly and have raised awareness of it.”

Since she posted the note to Facebook on April 30, it’s been shared over 3,000 times. Metcalfe hopes the letter will eventually be seen by the note’s writer so he or she can be educated on invisible illnesses.

h/t Metro UK

Clarification: The original version of this post did not include the fact that Sarah Metcalfe did not have a handicapped parking pass in her car window at the time this note was left. The Mighty later reached out to Metcalfe, who told us she did not have a badge at the time of this incident but was awaiting the one she’d already applied for.

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Photographer Goes the Extra Mile to Surprise Chronically Ill Fan

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Photographer Benjamin Von Wong decided to seize the opportunity to make a chronically ill fan’s dream come true.

A while back, Tyler Grace, an aspiring photographer from Australia, posted the following message to Von Wong’s Facebook page:

Screen-Shot-2014-08-03-at-12.30.00-PM1

Earlier this year, Grace’s sister messaged the photographer asking if he would record a short “Happy Birthday” video to celebrate her brother’s 21st. Instead, Von Wong decided he’d rather go the extra mile and visit Grace for a weeklong adventure, according to his blog.

“At the time, I happened to be touring in Singapore and I thought to myself: When am I ever going to be this close to Australia again? Why just make a video when it was within my power to make an impossible dream come true?” Von Wong wrote.

Soon after, he was on his way to surprise Grace and give him a crash course in photography and adventure. During the visit, the two took a canoe trip, went to a rodeo, spoke at a conference to help raise money for the trip and partnered up for a few photo shoots. Von Wong even took the below picture of Grace and his sister.

VON_2297-Edit

Lucky for us, Von Wong was able to convince a few friends to document their journey in the video below.

Grace suffers from a bevy of chronic illnesses. In the video he mentions fibromyalgia, rheumatoid arthritis, nerve damage, parts of marfan syndrome, sleep apnea and insomnia. Grace says that finding Von Wong’s work and taking up photography are what gave him a life worth living.

“Photography actually is what gets me through,” Grace says in the video. “Before that I was bed ridden for five years. I had no aspirations, no dreams. I was puttering around not really doing much.”

When recapping the trip on his blog, Von Wong said that making Grace’s dream come true was one of the most valuable things he could do with his work.

“I think it is projects like these that truly give meaning to what we do as creative’s,” he wrote. “What use is all the fame and popularity that is accumulated over a lifetime if it can’t be put to use and change the world for the better?”

All photos courtesy of VonWong.com.

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5 Ways You’re Not ‘Living’ With Chronic Illness

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A fine line, ladies and gentleman — it’s what stands between living with chronic illness and being alive with chronic illness. I’ve straddled it a few times, but I’ve figured out some of what’s on the other side and here’s what I know:

1. You’re not living with a chronic illness if you’re hunting for the “Why” full time.

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Is it because of a parasite? A bacteria? A cancer? Is it because you wore that blue dress last Tuesday? Is it because you stuck gum in someone else’s hair that one time in second grade? There are an infinite list of possibilities as to WHY you could be sick. But after a while and at least for a while, you’ve got to take a break from the endless hunt for answers and ask yourself, “How am I going to handle living with my disease today?”

There has to be breaks and balance within the search for answers. You can’t just live going from doctor to doctor. You have to even out the space in between with friends and work and family.

Because you can’t hunt, you can’t search, you can’t question and you can’t get an answer for any of the why’s in life until you’ve mastered feeding yourself, moving yourself, balancing your work, relationships and symptoms at the same time. I mean, you can throw all of those things out the window and just hunt while you lay in bed dying.

But we don’t call that living.

2. You are not living with chronic illness if you’re not working.

Meme that reads "Good things come to those who work their asses off and never give up."

Don’t panic. I’m not living under a rock, I know lots of people with chronic illness can’t work conventional jobs. So I don’t mean working in the 9-5 sense. I mean working in the “I have a goal” sense. Like, my goal is to get enough documentation to get disability. Or, my goal is to raise my kids as best I can despite my symptoms. Or my goal is to focus on my physical therapy so I can become more mobile each day. Or my goal is to find ways to work from home. Working is purpose. Do you have it?

3. You’re not living with chronic illness if you’re hating yourself.

Meme that reads "Don't compare your behind the scenes with someone else's highlight reel." - Steven Furtick

Sure, it’s super easy to slap a “defect” sticker on your chest and go cry in the corner. Hating yourself is about as natural as all the other symptoms of chronic illness — weight gain, constant pain, fatigue — but this is (maybe) one of the only symptoms you can wake up and shake off every day. Go to therapy. Learn to cope a little more every day. Making peace with your disease is something you have to do because…

4. You’re not living with chronic illness if you’re “fighting” it.

Sign that reads "Serenity is not the absence of conflict but the ability to cope with it."

Can we clarify something here for the general population? Fibromyalgia is not part of the WWF. Chronic illness is not cancer. You don’t “fight” it. You don’t “beat” it. You don’t make a voodoo doll out of it and start stabbing it with acupuncture needles. In the same way we don’t use the word “cure” to mean “treat’ we can’t use the word “fight” to mean “deal with.”

Chronic illness is:

  • coped with
  • managed
  • organized
  • contained
  • controlled
  • lived with
  • handled
  • confronted

Managing chronic illness means developing strategies to assist you in moving forward with your life’s greater focus with as minimal suffering as possible. Don’t head-butt your disease, outsmart it.

5. You’re not living with chronic illness if you are not moving

We all linger in stagnation for a while. We get stuck in the mud. Blindsided by an unexpected diagnosis. We let the moment we need to absorb, absorb us. Life with chronic illness is just like any other — a life full of obstacles. With pain, illness, exhaustion — it’s easy to sit down for a while and rest your body. It’s easy to lay down and not get back up. But if you’re not moving, you’re not living. So even when the obstacles become too great, the treatment stops working, the doctors stop telling you the good news, even when you lose support, you lose sight of what you’re moving towards — you keep moving.

Meme that reads "It does not matter how slowly you go as long as you do not stop." - Confucius

This post originally appeared on LetsFeelBetter.com.

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