Fibro Myth #6: It's all in your head!

How many times have you heard either a doctor or a friend tell you that your fibro is all in your head? That if only you focused on something else, the pain would just disappear. If you've been sick for a while, chances are you've probably heard this atleast a couple of times.

Unfortunately, friends, some people treat us this way, and perhaps even more shockingly, some doctors treat us this way too. If you're not a chronic pain sufferer, you may not understand the impact of hearing such a statement - Imagine this. You find out you have a brain tumour. It's fairly serious. It's causing your cells to mutate and your muscle functions to be disrupted. You go to your doctor & show him the scans and explain. This is what he says:

You're probably laughing now, but is our fibromyalgia any different. Most researchers and doctors agree that fibromyalgia is caused by a change in the neurological system which causes our brains to perceive pain differently. So technically, yes, just like a tumour, it's all in our head. But what difference does that make? Just like you wouldn't ignore a tumour just because it's in your head, so it is with our fibromyalgia. Only a fool would walk around with a tumour, simply trying to push through it! And yet, that is what a lot of people tell us to do.. Friends, do not get caught up in trying to "push" through and simply survive. Take steps to help yourself, seek assistance and pursue treatments and strategies. 

Sure, the fibromyalgia is in your head (ie. brain), but that doesn't make it any less real or painful. 

Fibro Myth #5: You don't look sick, so you must be feeling better

Just because you can't necessarily see our illness on our faces at first glance does not mean that we are not sick. Our illness may be invisible to you, but we are not. And our suffering certainly is not.

If you are chronically ill and have been so for a year or more, chances are you've heard atleast five people - doctors, friends, colleagues or family - say that you don't look sick. They might say something like, "I can tell by looking at you today that you are well". You've probably felt the sting of comments such as those.. Let me tell you it hurts.

Really, could you imagine saying that to someone who's just been diagnosed with cancer or a tumour? Or to someone who's torn a ligament in their leg? Definitely no!

The only way to stop or prevent these hurtful comments is to spread awareness. We need to tell our friends and family that those comments are hurtful. We need to share about how fibromyalgia works and how we can be in imaginable pain, while still not looking it.

A friend of mine wrote the following, which you might find helpful to share with friends/family:

• You can't see that it is taking every ounce of physical and mental energy to keep it together as my pain levels are overwhelmingly high. You WILL see me concentrating hard, sweating and getting exhausted quickly. 
• You can't see that I am battling migraines. You WILL see me take a sick day, reach for my medications constantly or massage my temples to ease the pain. 
• You can't see me getting lightheaded or dizzy whilst walking on stairs or taking steps. You WILL see me not walking in a straight line, touching my head and looking disorientated. 
• You can't see the pain, bloating and uncomfortableness from my irritable bowel issues. You WILL see me eating less, not enjoying eating and using the toilet often. 
• You can't see that I am in agony/ crisis pain levels. You WILL see me grimace as I carry my laptop, walk slowly and wish for the end of the day to come sooner. 
• You can't see my fatigue. You WILL see me drinking cups of tea, lots of water, taking breaks and holding my head.
• You can't see that I am panicking because the light and noise in the room is giving me sensory overload leading to a migraine. You WILL see me close my eyes, doing a mental calming exercise and not being attentive to everything that is going on around me. 
• You can't see my feelings of isolation or loneliness. You WILL notice that you don't hang out with me as much. 

May 12th has been designated as Fibromyalgia/CFS/ME & Other Invisible Illnesses Awareness Day, in honour of the famous nurse, Florence Nightingale. She was born May 12th 1820. What is not often known, is that she had a long term, debiliating illness, Brucellosis aka Crimean fever, brought on from contaminated wheat or milk, which caused chronic muscular pain. She knew intimately what living with chronic pain was like. Please get along side this day and share with those around you, every chance you get, about life with chronic illness.

For those who may have made these comments to people with chronic illness, let me let you in on a truth: Spend a day with your chronically ill friend & I guarantee you will be shocked at how much pain they have to deal with, amazed that you never saw it before, and bewildered by how your friend manages to do all that he/she does with this kind of daily pain.

Fibro Myth #4: I know the feeling, I get tired too!

Ever heard your family or friends or colleagues scoff when you tell them you're exhausted? Do they say, "yea, me too"? Do you feel like you're a dead man/woman walking?

Source

Unfortunately, for most people, having fibromyalgia also means battling extreme chronic fatigue symptoms. Chronic pain and fatigue often occur together - as many as three in four people with chronic, widespread musculoskeletal pain report having fatigue; and as many as 94 percent of people with chronic fatigue syndromes report muscle pain.

Being fatigued is different from just being tired. According to Dr Karin Olson, a University of Alberta professor (Faculty of Nursing), individuals who are tired still have a fair bit of energy, so although they may feel forgetful, and impatient, and experience gradual heaviness or weakness in muscles following work, this is often alleviated by rest. Fatigue, on the other hand, is characterized by difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, increased sensitivity to light and the limiting of social activities once viewed as important. Individuals with exhaustion report frank confusion that resemble delirium, emotional numbness, sudden loss of energy, difficulty both in staying awake and in sleeping and complete social withdrawal.

Unlike tiredness, long-term use of caffeine and other stimulants are generally avoided or minimised by people experiencing fatigue and exhaustion, as these substances "fool" the body into thinking it has more energy available than it really does.

So as helpful as your friends and family are trying to be with their comments, the fatigue/exhaustion suffered by chronically ill is actually not the same as tiredness. We, too, struggle with tiredness, when we are  extremely busy etc but we struggle with fatigue too, which is by far more sinister than the tiredness.

Our God is for us!

"I, even I, am he who comforts you.
Who are you that you fear mortal men,
the sons of men, who are but grass,
that you forget the Lord your Maker,
who stretched out the heavens
and laid the foundations of the earth,
that you live in constant terror everyday
because of the wrath of the oppressor,
who is bent on destruction?
For where is the wrath of the oppressor?
The cowering prisoners will soon be set free;
they will not die in their dungeon,
nor will they lack bread.
For I am the Lord, your God
who churns up the sea so that its waves roar -
The Lord Almighty is his name.
I have put my words in your mouth
and covered you with the shadow of my hand.
I who set the heavens in place,
who laid the foundations of the earth,
and who say to Zion, 'You are my people.'"
Isaiah 51:11-16

This passage is encouraging the people of God, who are struggling under foreign rule, who are crying out for God to send their Messiah, that God is sovereign. There is no need to fear their foreign rulers or the persecution they face, because they are God's people and the Lord, himself, has them covered & protected by the shadow of His hand. It predicts that wonderful, amazing day in the future, when we will spend eternity with God, when we will be set free from our rebellious bodies and be free to be God's people.

For us, as chronically ill, it has an additional meaning too - Because not only can we long for the day when God will take us to heaven to live with Him, but we can also long for Him in the everyday. He is powerful, more powerful that the disease that oppresses us, that causes us to live in constant terror of pain, being isolated and lonely or being unable to rest. He promises us that we will be set free, according to His promises and in the meantime, we can be sure that we will not be consumed and die in the dungeon of our illness and our daily needs (bread) will be provided for. He will give us words to speak, when we cannot find strength to speak ourselves and we are forever, protected and carried in the shadow of His hand. We are His people, because Jesus restored us to God by dying in our place on the cross.

This is the God that Paul speaks of, when he says, "If God is for us, who can be against us?" (Romans 8:31b). God is for you and he is with you today, no matter where you are at, be it a high, happy place or a dreary dungeon, dreaming of death; He is with you today and always.

Fibro Myth #2: You're so lucky that you don't work / work part-time

Contrary to popular belief, Fibromyalgia sufferers are not lazy people who are looking for an easy way out.

None of us long to work part-time or to not work at all. In fact, if you speak to most sufferers, they long for the days when they used to be able to work full-time.

We have little choice except to work reduced hours or not at all because of the impact that fibromyalgia has on our lives. At the end of 2010, I lost my ability to walk/stand without pain. I started work in March 2011, eager to start my new career. By the middle of July 2011, I was exhausted. I gradually stopped sleeping. I needed to spend my whole weekend recovering from extreme pain levels. I had to be medicated constantly, even if all the medications did was take some of the edge away from the pain. By the time I was diagnosed in August 2011, I was nearing my wits end. I knew that if I didn't get a break soon, I was going to drop dead.

Thankfully, my work was willing to allow me to take three months off and return to work this year on a part-time basis. Working 3 days a week is still challenging. My two days off are spent corresponding with doctors and trying various things to reduce the pain and to be able to rest. By working three days a week instead of five, I actually have a weekend, not just two 'drop dead and sleep' days.

Day after day I am inundated with people telling me how I can't complain that I am tired or how I am "living the life" by not working full-time. I have colleagues question me about what I actually do on my days off and why I am not partying or shopping on those days. If you're a fibro sufferer, chances are you've been hurt by comments like these before. Let me be frank, I choose to work part-time because I am not ready to lose my career over health yet. I choose to work part-time because I can still achieve and do something, even if it is minimal compared to my full pre-illness capabilities. I choose to work part-time because I have to earn something. I choose to work part-time because at the moment, there is no chance of me getting the support I need from Centrelink to be unemployed. I choose to work part-time over full-time because I need it to survive.

Dear carers & friends of fibro sufferers, please be aware of the pain caused by comments such as these. Your friends with fibro are not lazy! They are doing what they need to survive. In an ideal world, we would be allowed to rest & our illness would have the respect it deserves. We would able to work the hours that our bodies can handle. But this isn't an ideal world, we are just doing the best we can to survive. That does not make us lazy; that makes us fighters!

Fibro Myth #1: If you stopped being so stressed out, you'd feel better

So in the twelve days leading up to International Fibromyalgia Awareness Day on May 12th, I thought I'd share some helpful information about our illness and debunk some of the myths out there around the subject of chronic illness.

Fibro Myth #1: If you stopped being so stressed out, you'd feel better

Stress affects most people. And it is true that stress is extremely unhealthy. 

But, fibromyalgia and in fact, most other chronic illnesses are NOT caused by stress. 

In the past, doctors believed that fibromyalgia was a pyschological problem; an inability, in some people, to cope with life's circumstances. Then suddenly, ten or so years ago, doctors found out that that this initial hypothesis was wrong.

Fibromyalgia is actually caused by a change in the way a person's brain operates. The brain starts processing pain signals differently, perceiving consistently strong pain, where there is no muscular cause. Through brain mapping, doctors can actually see the difference between a normal person and a fibro patient, although such costly tests are not necessary to confirm diagnosis. As fibro patients, we have no more control over the way our brain works as a healthy person does. For example, can you force your brain to stop digesting your food after a meal - No! Your brain just does this.

But like most illnesses, chronic or otherwise, stress makes fibro worse. And as chronic illness sufferers, we are often naturally in a greater deal of a stress than other people. Add this to the stress of relationships with people who are not supportive of our health struggles, new symptoms, life circumstances (eg. loss of a loved one) & it's not so difficult to see why we feel overwhelmed. That is why we practice stress management techniques and relaxation therapies... Not because we are not good at dealing with stress, but because we have a whole lot more stress in consistent bursts to deal with.

The reality is, even if we were awesome at dealing with stress, we'd still be in pain, because we'd still have fibromyalgia.