It Can’t Hurt to Ask

The Australian Parliament is asking for public submissions into chronic disease prevention and management in primary health care.  This is our opportunity to write to them and ask them to fund research into Fibromyalgia and cater for patients who require home care, visits and support from medical professionals.

Despite an estimated one million Australians living with Fibromyalgia, there is limited services, support and information available. The gaps between research and daily care are unacceptable.

Now is the time to ask the Federal Government to provide:

  1. Leadership and coordination of a national approach to provide integrated management of Fibromyalgia services, building on the work of state governments, private sector providers, Medicare Locals and Local Hospital Networks.
  2. Access to quality services for all Fibromyalgia sufferers including people in rural, regional and remote areas, indigenous and socio-economically disadvantaged communities, children, and older Australians.
  3. Access to education and training for health professionals in particular as it relates to early intervention, multidisciplinary team practice and the early identification of Fibromyalgia.
  4. A public awareness campaign to address discrimination, misunderstanding and stigmatisation of people with pain within the community, including in the workplace and in welfare and compensation systems.
  5. Funding to provide community support services including consumer information, self-management education and telephone support (crisis help line).
  6. The development of a national research agenda to address gaps in knowledge about Fibromyalgia and improve clinical practice in pain management.

The deadline for submissions is Friday, 31 July 2015.

Please make a submission if you can.

 

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Making Awareness Day Personal

For 2012, 2013 and 2014, I went BIG for Fibromyalgia Awareness Day. This year, I’ll admit to dropping the ball. I’m tired, physically and emotionally. I’m tired of fighting the world. So this year, I’ve been fighting for me!

I’m sorry if you feel like I have let you down and not been there to support you.

I made this video (quite a while ago) because I am lucky enough to have a Mommy who loves me and tries to understand. (I’m not so sure about the rest of the family.) But, because of this, it upset me so much when I hear from so many of you that you don’t have the support and understanding you need. Friends and family are supposed to be there for whenever you need them. Most days, I get a message or comment from some-one who is lacking support from their nearest and dearest. Sometimes, it’s because you hide your pain, or you haven’t asked for help. Sometimes it’s because they just don’t get it. 

I’m hoping that presenting these people with this video might help.

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Three Times a Charm – ThunderClap!

If you follow my Twitter or Facebook page, you will know that I am supporting and promoting May Twelfth‘s Thunderclap ‘Tell the World!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number, Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook and Twitter that cannot be ignored!

For example:

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

What is THIS Thunderclap?

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

The message will be published on every supporters’ Facebook page and/or Twitter feed (if (WHEN) we have reached the goal number) on May 12, 12:00 PM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach by supporting with Twitter or Facebook; and/or
  • promote by inviting friends by sharing or tweeting.

Our goal: to no longer be ignored! Last year, we reached 768 supporters – let’s double that!) Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

Many people (and doctors) do not know what it is (or doubt its existence) – it is time to make people aware!

Help take the mystery out of Fibromyalgia, and help spread something more powerful: HOPE!

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

What’s Happening for International Awareness Day 2015

I’ve dropped the ball this year when it comes to International Fibromyalgia Awareness Day (it’s been hard enough keeping my own s#!t together…know what I mean?) but that doesn’t mean others haven’t been picking up the slack.

CN Tower, Toronto, Ontario, CanadaHere is some of the stuff going on near you:

The CN Tower in Toronto, Ontario, Canada will light up blue, purple and green as part of International May 12th Light Up the Night. Each light show will run for 8 minutes at the top of every hour. You can watch via Toronto’s skyline webcam located at http://toronto.webcampak.com

Toronto City Hall CanadaCity Hall in Toronto, Ontario, Canada will be lighting up blue and purple.

The City Halls of Brampton, Mississauga and Ottawa will all light up AND the day will be proclaimed in each city.

cityhalls

Halifax City Hall in Nova Scotia, Canada and BC Place Stadium in Vancouver BC…

City Hall, Halifax, Nova Scotia, Canada

BC Place Staium, Vancouver

Canada Place – Sails of Light, Convention Centre West, Jack Poole Plaza and Science World in British Columbia; Banbridge, Armagh Gaol, Craigavon Civic Centre in Northern Ireland; Charlottetown PEI City Hall and the Peace Bridge between the Canada and US border will be lit with all three colours.

Brighton Sea Life CentreThe Sealife Centre in Brighton UK will be lit up during the day.

ASpam Building, Aomori, Japan (1)In Japan, Aomori Prefecture Tourist Center, Aspam, will be blue on May 12th, again. In addition, in Akita Prefecture, there will also be blue light up event happening for the first time at the CFS/ME doctor, Dr. Miura`s satellite clinic in Sotoasahikawa on May 12-13th.

swedenBorås City, Sweden has a huge accumulator tank for warm district heating water. It will be lit up blue with 5 000 led lights.

perthTo my own country, Council House in Perth, WA, Australia will light up.

And AAMI Park in Melbourne…

AAMI pic

You can see a growing list of events HERE.

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Living Well with Fibromyalgia – Invisible Tears

For those of you who haven’t seen it, the last issue of Living Well with Fibromyalgia is now available to the general public. For next time, however, you can have it delivered to your inbox by subscribing for free. But, that’s not the reason for this post…

Uncle Sam

The next issue of Living Well with Fibromyalgia will be out March 1st with the theme: Invisible Tears. I chose this theme because it resonates so deeply with me, as I know it will with so many of you. Would YOU like to be a part of it?

I’m looking for people to contribute (people like you) to the March issue. You can contribute poetry, photos, articles and/or stories. Articles and short stories must be under 800 words. All contributions must fit within the Invisible Tears theme.

I also ask that you send me a short biography about you and a photo (as well as any pictures you’d like to accompany the story). If you have a blog/website and/or Facebook page, I am able to link the piece back to you.

So, if you would like to see your name and work in virtual print, please send your contributions to contributions@fibromodem.com by February 1st 2015.
I can’t wait to start reading what you have to write!

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To Affirm or Not To Affirm – A Question

lens18041543_1307890912question_mark_purpleSo, after 31 days of affirmations, are you feeling empowered? Reassured? Are you on the way to relinquishing your fears and purging your anger, predicting your own future and living up to your potential?

Or (and be honest) did you find yourself reading the affirmations and feeling all sorts of angry? Feeling forced into positive thinking?

Okay, so it doesn’t work for everybody: it floats some people’s boats and, for others, it has more of a torpedo effect!

Megan Bruneau, from MindBodyGreen, has created a list of reminders (call them whatever you wanna call them), that actually help her live her own best life:

  1. I’m imperfect, like everyone else, and that’s OK. My self-worth is not dependent on an accomplishment, number, or status.

  2. Life is filled with sadness, pain, illness, death, and loss. These are universal human experiences.

  3. Pain is out of my control. Self-compassion is in my control.

  4. I am constantly changing; my world is constantly changing; everything I experience (physical, mental, and emotional) will come and go.

  5. Being perfect is not what connects people. Vulnerability brings us closer together.

  6. If I knew I only had a week to live, I should ask, “what would be important?

  7. There are no “bad” feelings; however, there are unhelpful reactions to difficult feelings. Experiencing uncomfortable feelings doesn’t make something wrong with me, it makes me human.

  8. Playing is not irresponsible; in fact it’s the opposite. Fun is necessary for happiness.

  9. The longest relationship I’ll have in my life is the one with myself. Other people will come and go, but I’ll be with myself from birth until death. The sooner I decide to start being kind to myself, the longer I have to live life supporting rather than undermining myself.

  10. Whatever it is that I’m going through, chances are there are thousands of others going through a similar experience. We’re all in this together.

  11. To ask for help is not a sign of weakness; on the contrary, it’s actually a sign of strength and courage

  12. What’s the worst that can happen? Consider that question. Then ask: “What do I need to survive that?

  13. Things come together and fall apart, and come together and fall apart again. This is what life is.

  14. There are no objective truths. How I perceive myself and my world is flexible and can change.

  15. Acceptance is not about liking, wanting, or condoning. Acceptance can liberate us.

  16. Humans are resilient beings. I am programmed to heal.

  17. We have the ability to find meaning in our suffering. Sometimes it just takes creativity.

  18. What serves another person might not serve me, and vice versa.

  19. Realistic expectations mitigate unnecessary pain, disappointment, and frustration, and my energy changes from moment to moment. I put 80% in everything I do, sometimes more and sometimes less.

  20. I don’t have to “reach my potential” but I will do my best not to sleepwalk through my life.

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Basically, you need to do whatever it is that works for you. I will NEVER tell you what to do. I WILL try to give you some ideas to try: maybe some things that have worked for me, or even some things that haven’t. I love to hear what you have to say (although it may be difficult in this forum) and I always welcome your input here, on my Facebook page and with articles in LIVING WELL with FIBROMYALGIA.

I hope that you have all found something that is giving you, at least, a little relief this year; and I look forward to discovering new ways to help each other next year.

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Marbles, Spoons & the Whole Megillah

Have you tried to explain chronic fatigue syndrome and/or fibromyalgia to some-one who just doesn’t get it? How about to your kids?

marblesExplaining why you can’t do the things other moms and dads do is a challenge but Melinda Malott’s book How Many Marbles Do You Have? Helping Children Understand the Limitations of Those With Chronic Fatigue Syndrome & Fibromyalgia provides a simple, easy to understand way to do that. How fabulous to finally be able to say to your child, “Here’s a book about what’s happening to me.” It’s a great way to explain ME/CFS or FM without overburdening your children with things they don’t need to know and probably won’t understand.

What is your story with ME/CFS?

MMMelinda: I became symptomatic in March 2006.  At the time, my son was 18 months old and my daughter was 3 ½.  My symptoms progressively got worse until May of 2009 I was reduced to the confines of my home almost exclusively for 2 years.  I have had some improvement.  My improvement coupled with a management strategy has really helped me.  I am still unable to work or do any physical exercise to speak of, but I lead a full life as a wife and mother of two.

Why did you choose to do a children’s book?

Melinda: I remember the day my children came into my bedroom and both started crying.  They thought I was dying. I was too sick to try to explain, and as the clouds dissipated I came up with the marble and jar analogy.  I had looked online for resources and there were NO books to be found for children.

How did you approach telling children about ME/CFS?  

Melinda: I have a bachelor’s degree in nursing and a Master’s degree in community health education, but my formal education did not prepare me to explain something as complex as CFS and fibromyalgia to young children.  I decided rather than try to explain something I couldn’t understand that it was best to try to help my children understand my limitations. Using a jar and some marbles I was able to say yes and no without having to say I was in pain, or I didn’t feel good or I was tired.  I could simply say I was out of marbles.  Don’t get me wrong, they know I have bad days. I just don’t feel the need to amplify that for them.  They see it first-hand.  The marbles and the jar lessen the notion of a momma who is suffering.

You can visit Melinda at her website.

This is the book we’ve been waiting for—a story for children of parents with Fibromyalgia or Chronic Fatigue Syndrome. In fact, I plan to buy a copy for all my loved ones, so they’ll better understand what my life is like. It all depends on how many marbles are in my jar each day—the perfect metaphor for explaining the unpredictability and the ups and downs of Fibromyalgia and CFS. At the end of the book, Malott writes “… a heart full of love beats a jar full of marbles any day.” Not only is this book informative and insightful, it’s a heart full of love in itself.

Toni Bernhard, the author of How to Be Sick

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#SICK Looks Like Me

Lottie 1I was pointed to this blog post from a Facebook group I belong to: it’s by Lottie Ryan of Who’s That Lady For Women With Chronic Illness.

I wonder how many people will try to do this? Or how many will give up (before beginning) and say ‘too hard’? I wonder if it will make me feel better? Or if feeling better will make me want to try it out?

Have a read and let me know what you think…

One thing that Lottie is definitely correct about is that #sicklookslikeme.

SICK

The Revolution

I incite a revolution at the end of this post but you’re going to have to read it to understand the point, so grab a cuppa and dive in…

HAVE YOU STOPPED MAKING AN EFFORT WITH YOUR APPEARANCE?

IS MAKEUP FESTERING IN A DRAWER SOMEWHERE HAVING NOT SEEN THE LIGHT OF DAY FOR YEARS?

HAS ‘MAKING AN EFFORT’ BECOME SOMETHING OTHER WOMEN DO, WOMEN WHO AREN’T LIVING WITH CHRONIC ILLNESS?

If so, then you’re going to get something valuable from this post, but if makeup, nice clothes, looking good and all that jazz aren’t your thing, and are never likely to be your thing, then you might just want to skip to the action in the last paragraphs.

At some point during my late twenties, early thirties, I stopped wearing makeup.

This happened at exactly the same time as I stopped being the real me and stopped valuing myself as worthy.

I’d stopped wearing makeup and fallen into the “I haven’t got the time or energy for that” thing or “No one needs makeup, I’m happy au natural”, which was really code for “I’ve stopped caring about myself, because I’ve forgotten my true value, and I don’t think I’m worth the time or energy”.

I also thought I had to look sick to be sick.

On top of the usual mommy guilt from which we all suffer, I had the added guilt of having birthed my children into a seriously ill situation knowing I couldn’t care for them as I wanted, and as they needed. I turned to my amazing husband (who never fails me, or them) and our parents to help, but with that felt a compelling need to ‘prove’ I really was as sick as I felt.

In addition I noted that doctors take a lot of interest in your appearance and on the odd occasion I’d turned up to clinic looking better presented their exclaims of ‘Oh, you look much better, I’m so glad to see things are improving’, despite my protestations that they weren’t, made things harder, giving me more reason to look sick to prove I was sick.

Then one day I realized I was deeply, heart achingly miserable and I’d started avoiding mirrors or any reflective surface as the sight that greeted me was just too depressing.

I’d become something I just wasn’t inside and if my chronic illness was indeed chronic and therefore for life I just couldn’t continue the rest of my life as the miserable, depressed, pale and wretched thing I’d become.

My marriage and relationships couldn’t survive me being this wretched person either. It was too depressing and awful. Oh, don’t get me wrong, my husband loves me with or without makeup, but there’s no doubt he finds me much more attractive when I’ve made an effort with myself, and why shouldn’t he? I certainly always wore makeup during the time we dated and was not pale and wretched-looking, so that’s not who he fell in love with. Nor did I walk down the aisle without makeup on, so that’s not who he married either.

I Can Change

I recognized that I couldn’t quickly, if ever, change what was going on inside of me but I could change how I presented myself on the outside and thus how I felt about myself.

Though weak, in pain, and truly exhausted there was definitely still a sparkly heart thumping in my chest, intrigued by all things bright, excited by small adventures and so very open to living a beautiful life despite it all. I needed others to see this person and recognize me for who I was despite my illness, and in turn that recognition might just bring me back to life.

The only person who could change this situation was me. I decided to stop worrying about others’ judgements and assumptions and go out shining as I truly am inside; to be authentic and acknowledge that how I look has no true bearing on how I feel.  Doctors and others soon got used to seeing me looking amazing but showing up in all of their tests as the sick person I undoubtedly am.

I went on a mission to redefine what sick Lottie looks like.

To start this, I started wearing makeup.

It was that simple.

There’s a lot of cynicism around make-up and modern beauty standards, but I’m of the opinion that we have this amazing tool at our disposal, to help us feel better about ourselves, so why not use it?

Women fought to wear makeup (seriously…read on)

It’s a fact that women fought hard for the right to buy and wear makeup without shame. It’s a right we sought alongside our right to vote.

Prior to around 1910 makeup was an ‘under the counter’ business, deemed fit only for ‘Ladies of the Night’. In the 1920s women demanded the right to dress and make themselves up as they see fit; relinquishing their corsets, showing their legs and wearing bold makeup with red lips and smokey eyes.

Makeup became widely sold over the counter and worn by the average woman. It has been a tool women have used to express their femininity and create the best version of themselves ever since. It’s an important part of our history and modern being, and I’m a big fan.

Wearing makeup again was just the beginning of my long journey, so if you recognize yourself as similar to the way I was at the top of this story, take hope in the fact that YOU CAN change back, or into the person you really are, with small simple steps that won’t overwhelm you.

Hopefully you’ve read my ‘5 Simple Steps to Better Mornings’ and started doing them. I know they seem ridiculous in their simplicity, but this is where I started and if my personal journey is anything to go by these simple things might just lead you to various adventures of a lifetime.

From Pilled Up to Pinup

If someone had told me 6 years ago when I started this journey that wearing mascara would be the start of my journey towards becoming a published vintage pinup model I would have laughed in their face and told them they were being ridiculous. I, a woman in her early thirties, mom of two toddlers, with BOWEL disease, fluctuating weight due to steroids, and a future filled with abdominal surgeries could not possibly be a vintage pinup.

Yet here I am:

lottie 2

Let’s Start A Revolution

Start small. Start today and then start dreaming about what you really want in your life, as these small steps WILL lead you somewhere great if you take action.

You can read my stories, my suggestions and my ideas all day, every day, but nothing is going to change unless YOU TAKE ACTION.

So, I want your help to start a revolution.

I want to change the way sick is viewed by people. In the 21st century people can live with a chronic illness and look fine. I could be in hospital almost dying and still look pretty good with my makeup on and my hair done (in fact I have been, much to my nurses’ amusement). Judgements based on looks are outdated, unhelpful and need to change, and I need your help to change them!

Go and ‘put your face on’, that beautiful face that mirrors your heart not your illness, and head out to shine despite it all, but first take a selfie – yep, I’m for real.

Lottie 3

We’re going to document this, and start a revolution at the same time. There’s power in a hashtag don’t you know?

When you’ve taken your selfie post it on Twitter/Instagram/Facebook with the hashtag #sicklookslikeme, then post it here in the comments too or, if you’re shy, come into our Facebook group and post it there, until you build your confidence to perhaps post elsewhere.

Are you in? I hope so as I can’t bring about this change on my own. This is all about team work and I want YOU on my team.

You’re never alone.

Lottie -x-

PS This is not a one-off, thing. I’m going to use this hashtag and work on this revolution for the foreseeable future. There’s work to be done! #sicklookslikeme

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HIS and HER Fibromyalgia

I received an article to my Inbox this morning from newlifeoutlook│Fibromyalgia about men with FM:

Is Fibromyalgia in Men Different?

Fibromyalgia-in-Men-210x270Many people believe that fibromyalgia is a woman’s disease. In fact, men do get fibromyalgia, though not at the rate of occurrence seen in women. It is unknown why women suffer from it more often than men.

People with certain biological markers are predisposed to fibromyalgia. Fibro patients of both genders have been found to have a higher level of substance P, a neurotransmitter that signals pain. To make things worse, their level of serotonin is lower than average; this neurotransmitter is responsible for inhibiting pain. Genetics and hormones also have a role in bringing the disease out or making it worse. Women are more likely to experience more pain because estrogen reduces the pain threshold.  The heightened sensitivity to pain may be why the odds are greater for women to be diagnosed with fibromyalgia.

How Fibromyalgia Affects Men

Men often have less severe fibromyalgia symptoms than women do. They may not have as much pain and it will be in fewer places; they often don’t have the complaint of “hurting all over” like female fibromyalgia patients do. They also don’t experience as much fatigue. They do, however, experience many of the other conditions and symptoms that accompany fibro, including irritable bowel syndrome, chronic fatigue, difficulty sleeping and restless leg syndrome. Memory problems are apparent and it can become very difficult to concentrate at times.

Undiagnosed Fibromyalgia Cases in Men

There may be more cases of fibromyalgia in men then we know about, as men are less likely to go to the doctor than women. It is usually gender-based stereotyping that influences this trend – men are raised to think they should not admit to any weakness, that they shouldn’t complain of pain or discomfort lest they be viewed as less of a man. It is estimated that up to 20% of men with fibromyalgia are undiagnosed.

If you think you may have fibromyalgia, it is important to see a doctor as soon as possible. By putting it off, you put yourself more at risk of developing complications. This means your work could be affected as well as any hobbies and other important things in your life. You could also be putting your mental health as risk. Depression is a common ailment that crops up among men who delay getting an answer to their health problems. Work with your doctor to get the proper diagnosis and treatment. The sooner this is done, the better you will feel so that you can enjoy life again.

Managing Fibromyalgia

Fibromyalgia cannot be cured, but it can be managed. Medications can help control the symptoms and lifestyle changes can help in a big way. Being overweight can increase the pain and fatigue that accompanies fibromyalgia, so adding exercise to your daily regimen and eating better will help lessen these symptoms.

Resource: Web MD (How Fibromyalgia Affects Men)

Head clampBut I also remember writing about a study a while back…so I did a little search of my own blog and found Men Get Fibro, Too! from back in 2012 and (although all my picture links are missing) the post mentions an Israeli study from 2000 that found men with FM actually had more severe symptoms, decreased physical function, and lower quality of life than women the same age with FM.

I don’t know too many men with FM personally, so what do you think?

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At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

invisible

Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

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