Negotiating Pain

Pain. A world unto itself.

Living with Chronic Pain, as a rule, is a private emotional affair that you cannot end nor want to continue. It's a torturous, intensely personal journey that you cover, hide, dare not display to anyone for fear of their judgment. If only I looked as good as she does on steroids. If only I could manage the way he does with that ankle problem. If only I tried harder. If only...

Coping becomes that thing you do really well that no one really gets because they can't see you do it. And, as a society, we expect people to just get on with it. To cope. Because no one likes a complainer.

And, in that fear of becoming a dreaded complainer, not only do we cope, but we allow other people to tell us HOW to cope. When to cope. How WELL to cope.

We never give ourselves permission to feel the pain and often doctors will tell us that if we only just did something to take our minds off the pain, well, silly patient, you wouldn't feel it so much. You're over sensitive. You're making a mountain out of a molehill. You can't possibly be in that kind of pain and still LIVE a life.

When did we decide to allow others to negotiate our pain?

Pain exists in all forms, mental, physical, emotional, spiritual. These are my battles with pain.




Chronic Pain

When you're ill, you DO learn to cope. It's almost as if dealing with pain and the fall out of being ill becomes second nature, a full-time job for the soul.

But not only do we allow others to tell us how much pain we physically feel, we allow them to tell us to move on. To get over it. To NOT feel the pain of the losses we are constantly meeting and accepting.

You learn to smile and nod and hide how much you hurt. Because you're doing your best to cope. With pain. With fear. With regret. With disdain. With sorrow. With grief. With momentary flashes of acceptance. With the loss of the life you once dared to dream. With the prevailing uncertainty of tomorrow.




When Sophie was a baby, she was in great distress. The regurgitation her body endured was almost endless and she would make these faces. People kept dismissing what was obvious pain by telling us it was 'wind' or 'baby emotions'.

We took her to at least 6 different doctors before she was diagnosed with reflux. And in that time I was told I was a 'neurotic first time mother' and that she was mentally retarded. I didn't care if she really was mentally retarded, I just wanted her pain to end.

And I wanted, more than anything in the whole world, for someone to believe my baby was in pain.

I came across what's known as the FLACC pain scale. I printed it out and I took it to our specialist appointment with a paed. Here you can't just go to a paed, they are specialist hospital doctors. You need to be referred.

I printed it out, took it with me, and on the verge of a complete and total break with reality, pointed to the faces and cried: This. Is. Her.



After my twin loss, I thought about those faces. And I wished there was a pain scale. So that when someone asked me how I felt, I could point to the face and they would just accept it.

I was in pain.

Be it physical pain. Be it mental pain, I just wanted someone to nod and accept that I had endured a huge loss (the twin babies, my life, my ability to function and walk and feed myself). But it seemed all anyone really did was skirt around the issue.

I know they were doing what felt like the right thing, and I appreciate the extent they went to to preserve whatever sanity I had left, but some took it further.

By not only negotiating my pain (they weren't REAL babies, so you shouldn't be sad), they went as far as to state that they weren't even real. I actually had the displeasure of meeting an acquaintance at a Farmer's Market in Blenheim and she told me: "I thought when you said you lost twins they were like 6 months old. What you had was a miscarriage. We all have miscarriages. They don't count. You should be glad you don't have cancer!!"

She told me this days after I started methotrexate; the drug being 'effective for the treatment of a number of cancers including: breast, head and neck, leukemia, lymphoma, lung, osteosarcoma, bladder, and trophoblastic neoplasms.' *

And, on that day I'd get second degree burns from the sunshine despite wearing long sleeves, long pants, sunscreen, a hat and sitting in the shade. I had to have those burns packed. It felt ironic and cruel. And yet, I said nothing to her. Why?

Why was she allowed to negotiate and define what I was going through and yet I remained silent. Because it was polite? Because she had the right to tell me what I was going through was nothing compared to something else?

What is it about illness that allows others the right to tell you exactly how you aren't struggling or enduring something really serious and inherently crappy?

George Clooney & Suicide


I'm not normally a fan of relating one's life to that of a celebrity. They have access to doctors you and I will never be able to meet, the cash flow to set themselves up with whatever help they need, but when I read about George Clooney considering suicide as an option of living with chronic pain, I instantly related.

George says: “I was at a point where I thought, ‘I can’t exist like this. I can’t actually live.’ I was lying in a hospital bed with an IV in my arm, unable to move, having these headaches where it feels like you’re having a stroke, and for a short three-week period, I started to think, ‘I may have to do something drastic about this.’ You start to think in terms of, you don’t want to leave a mess, so go in the garage, go in the car, start the engine. It seems like the nicest way to do it, but I never thought I’d get there. See, I was in a place where I was trying to figure out how to survive.” *

In a period between 2008 and 2009, I too often went to that place. The pain wasn't managed, we had no idea what was ravaging my body and I had a small child that was being displaced constantly because of my pain. I became a really horrible person as the pain ate at me. I lived in this drugged state of mental blah with pain still stabbing through the haze. I wanted to end my life. It was only when I came clean with my doctor that we both decided I was going to push through and get on top of my life.



Miscarriage

I am an ardent supporter and advocate for women going through miscarriage or pregnancy loss. I feel it is one of the most marginalized experiences women can go through with the expectation they are never to mention it, to feel it or to allow it to affect her for the rest of her life.

Things people actually say to women going through Loss:

Get over it.

It wasn't a real baby.

It's not like losing a REAL baby.

I have a friend whose cousin lost a baby to SIDS, so your miscarriage doesn't count.


Why do we allow anyone, especially other women, to negotiate and discount our pain during this time of loss?

Losing a baby is real. No matter how many cells that baby had, no matter how you lost your baby, the pain you feel is real. It will alter you, to an extent, for the rest of your life. And that's ok. It's ok to feel that pain. It's ok to tell someone about that pain. It's ok to choose to move onwards after you feel that pain. That's called grieving and life with grief is hard but it gets better. I promise.




Infertility

Infertility may be a physical condition that affects the body's ability to reproduce, but it hurts. It digs in at every junction in your life. And, contrary to popular belief, once you have a baby, it doesn't automatically go away.

For me, my cause of infertility was PCOS and my amazing ability to miscarry. And the pain of ruptured cysts, the inflammation of my ovaries, hardly begins to rate against the pain of the fear that there would never be a child in my arms.

And yet, infertility is so dismissed that you dare not even mention the term in company.




A few years ago a wonderful infertility blogger named Emily (a happy update that Emily got her gorgeous baby!) explored the idea of Pain Points to be awarded. She felt that because she had *only* been trying for 3 years with no successful pregnancies her pain might not be as much or as important as someone who had lost twins from a premature birth, who held their babies and watched them die.

And we, as a community of infertility bloggers, an often fractured, jealousy riddled community, decided that there are NO pain points.

You feel pain. I feel pain. Each of our lives have been shaped by grief, by traumas, by shitty and amazing things that have happened. We feel pain to different extents and often extremes, but my pain is just as valid as yours. Your pain is just as valid as mine.

If I cannot understand your grief and your pain, that is MY problem. If YOU cannot understand my grief and my pain, that is YOUR problem.

It is impolite and incorrect to assume that because you have not experienced my grief and my trauma that you cannot understand the concept of universal pain, and that I do not 'have the right' to experience this pain.

It is wrong to negotiate someone else's pain. End. Of. Story.




Depression

I was diagnosed with depression formally in 2002. I was 21 and had planned on ending my life on my 21st birthday. I had a plan, a razor blade and no desire to wake up. If not for the complete endurance, sheer power of love, from my partner, I wouldn't be here, I wouldn't have an amazing life and you wouldn't be reading this.

I started Prozac titrating up every 10 days. It was horrid. It was worse than the depression itself. I started counseling. I started getting real.

And I've battled depression and anxiety ever single day since. Every day I CHOOSE to get up and fight this.

Early in my treatment, my counselor told me to disclose to the people around me that I was going through depression and taking meds.

And early in my treatment, people I loved and respected told me that counseling was a waste, an 'American' invention that held no merit. And that depression was a 'personal weakness' and that Prozac, instead of saving my life, would make me a zombie.

To be frank, it pushed me further backwards. I think disclosure about depression shouldn't be on a whim. You need to think about it fully because once you've told, you can never untell.

Depression is not a personal weakness.

Medication will not make you a zombie.

Counseling is not an American invention to rob you of your money and time.

Depression is real. The pain you are feeling is real. I know you might not feel anything or just get tidbits of pain through the numbness and emptiness, but it is real. And I get your pain, and even though we've never met, I accept you. I accept your pain. And tomorrow can be better.


Helping a Friend

There are only 2 occasions in which someone has a right to interfere in someone's feelings: 1) If this belief is causing immediate harm to the person (ie, coping with cutting or suicidal actions) and 2) If this belief is causing repetitive mental strain that is causing repeated self-destruction or depression.

Otherwise, you and I have no right to negotiate what someone else is feeling, be it a broken toe, a miscarriage or a life altering chronic disease.

Permissive Permission

But, it isn't just illness. We give people permission to negotiate our entire living existence, simply because we feel we shouldn't stand up and advocate for our RIGHT to be anything less than fucking perfect.

You may internally feel that my pain is not as great, as valid as yours. Unbeknown to you, I have experienced things you cannot imagine, just as you have experienced things I have NO ability to relate to -- however, you have NO right to tell me that what I experienced and what I feel as a result is wrong.

Emotions are fluid. What sadness feels to me might not feel to you. What pain feels like for me simply isn't the same for you. Be it physical pain. Emotional pain. Mental pain. Dropping a hammer on a big toe hurts, but HOW it hurts and to which extreme I feel it is on a universal spectrum.

The same can be said for how I feel about my first miscarriage or my twin loss. Or going to bed one night a real, full living human being and waking up the next on oxygen.


We talk about supporting 'others', acceptance for people who fit the 'OTHER' category in life. And yet there is anything but acceptance. There is a societal need to erase your divergence from mainstream normal and replace it with a jaded, fake, superficial 'ok'.

How many times do you answer a question with 'ok' or 'good' because it is what is expected but has NO real resemblance to your actual existence?

Why do you do it? Because you don't want to cause a minor amount of discomfort for the person you're speaking to. Because you want to appear better than you are, even if it means causing more pain in the long run. Because you've allowed others to negotiate your 'icky' emotions, feelings, reality for the socially accepted ok.

And right now, right this very second, you're reading this and feeling that twinge of yes, why do I do it? And right now, right this very second, I want you to realise you have the power to change. You can choose, from this second, to get real about the pain you're in.

Be it physical pain. Be it mental pain. If you are hurting, right this second, I want you to acknowledge it and CHOOSE to be the person who controls this journey.

The 'What I Really Do Meme' for Chronic Illness

So I made this a couple weeks ago and thought I'd share it here.



I thought it was quite clever and feel it's quite true. So please share onwards!

I had the misfortune of introducing myself to a web-forum for people planning events and was told that it wasn't going to be ok for me to talk about 1) body size and issues with and 2) my illness, as it wasn't part of planning and it might make people feel bad.

I couldn't quite believe my eyes.

I honestly had to reread it about 5 times and catch my breath to reply properly.

People living with disability have a hard enough time coping with the reality of their 'new' lives without having to insulate the rest of society from some uncomfortable feelings.

Part of living and accepting life with disability is being able to talk about it. Like any other healing process, talking about it is vital. My illness isn't who I am, but it makes up a huge proportion of my life, so I talk about it. It's not pleasant for me either. But, it's not my job to make sure people don't have uncomfortable reactions to it.

That's part of being a mature and empathetic person. I live my life with concern and respect for others, and people with a disability expect you to do so in return. I didn't whack people with my crutch while using it, so don't whack me with your complete and utter disregard for my being.

Both my knees are sore today and I'm in a severe and grumpy mood. We have 4 days left of summer (a very wet and cold summer) and I am not excited about the prospect of 9 months of gloom heading my way. This email I received just topped off my approaching gloom.

*** Obviously we need more disability awareness. When did it become MY job to protect YOU from YOUR feelings about MY illness? ***

If You're On Prednisone, You NEED a medic alert bracelet

I was reading about prednisone last night, of course, because I am a geek. And one of the best resource I read about was
All About Prednisone by Robert D. Fusco, M.D.

One of the things that stuck with me the most last night was that if you are on a steroid treatment of 4 weeks or more, you have become adrenal sufficient and NEED a medic alert type bracelet and wallet card.

I've been on the steroid for almost 4.5 years and NO ONE has mentioned this to me!!

In the event of an emergency when no one can contact someone you know and love, you can slip into an adrenal crisis and no one will know what is triggering the symptoms.

This kinda sorta freaked me out.

Especially for those of us who have been on 40+ mg a day (often twice a day) for weeks at a time.

And the point was made that when you are weaning off Prednisone, you need more care and alert because your body is stressed from the wean, so should you become acutely ill or injured, you will need to increase the dose.

What?!

Why has NO ONE ever mentioned this? I was told to consider a medic alert bracelet for my sulfa drug allergy and/or chronic health woes, but no one mentioned prednisone or adrenal insufficiency.

Yikes.

The medal bracelet has never appealed to me because here you need a letter from your doctor, you then need to buy the bracelet and then pay the monthly fee for your medic alert bracelet. Hence why I never have bothered.

After reading the articles about Predisone and the need for overall awareness of the adrenal issues following injury or illness, I panicked. Google lead me to Mediband which can be bought off the website or in pharmacies in the US.

It's an amazing product! You can get a band in which you write on it, soak it in water and it will never rub off! Or you can get the pre-made bands alerting issues.

Much hipper, cooler and no monthly subscription fee.

They also sell a wallet card, though you can easily make your own.

A point on the site was made that you can wear the bracelets in hospital as they are NOT metal and it can help alert nurses and doctors of facts they may overlook.

As someone who was given sulfa drugs while wearing a bright orange band alerting the doctor to look at my file, being able to sport a bracelet featuring the words Sulfa Drug allergy may have prevented so much damage.

I am contacting them to make a Sulfa Drug allergy bracelet in their allergy style.



If you would like a steroid dependent and adrenal insufficiency bracelet, you can get it here.

Affordable. Bright. Attention Getting. Get Yours soon.

They also have a Facebook Page. Go like them now and ask any questions you may have.

The fantastic KirBir has a suggestion for you all:

There are others for sale from places like Walgreens which are like USB sticks in a bracelet, don't require a doctor's note, and are a little more discrete than those bright ones - http://www.walgreens.com/store/c/care-medical-history-bracelet-medium/ID=prod6016508-product?V=G&ext=frgl_Google_Medicines_&_Treatments

Or more stylish ones: http://www.stickyj.com/zy2068.html

A USB stick in the bracelet!? I'm getting one the next time Matt is in the US.

Now you really have NO excuse not to bling yourself up. It could save your life.

Combustion

For a brief time in my life, I studied chemistry at university. I'm good it, albeit don't really 'get' it. And for a while, we studied combustion. Combustion is treated as this miraculous event, and obviously it was. I mean, suddenly something was powered of it's own accord and you could fuel the engine and keep it going.

I like to think of the anger inside me as that powerful agent of combustion.

My child is excessively clingy, my husband is grumpier than hell and I hurt.

My doctor is overseas for a while. Apparently he wrote a letter confirming there is nothing physically apparent on the xray. Everything in my hips screams. I can't rotate it. I can't move it. I can't walk. I can't climb. I can't eat or sleep. It hurts.

SOMETHING is wrong.

He copied my Rheum on the xray and I suspect the letter. He didn't mention to me he was going overseas.

I have spent the morning on the phone. Trying to convince the GP's office to refer me to the hospital but they keep telling me it's against practice for another GP to take over a patient.

I have called the Rheum's office and keep getting put onto answer phones.

I've called various physio offices practically begging to take me on. Tomorrow at 3pm. Do they have any experience in mixed connective tissue disorders? Ummm...No.

Next!!

Things are chaotic here. Soph is so bored. She's becoming destructive.

I can only play Barbie for so many hours before I want to scream.

Matt is grumpy and cross. With me. With life.

People want to know what it's really like living with an ongoing illness? With chronic pain?

It's hard. It's not fun. It's horrible. It's rejection. It's being a blip on the radar of anyone who gives a damn.

Fights between one another. Kids who feel pushed to the back burner.

It feels like this volatile gas is building up under pressure. All it take is that magic of combustion before it explodes all over the place in excess.

There are days when you wish you didn't have to get up. That would be today. But I have to. There is no one else.

And there is tremendous pressure to be THAT mother. The one who can push through it all. With a smile.

I did laundry, cleaned and made brownies yesterday while battling a headache from the Tramadol and downing anti-naus meds.

I really wish there were days when you won medals. When someone brought you dinner. When they offered to vacuum. I want the gold star and the accolades for pushing through this pain.

I just don't want the damn thing to blow up into a billion messy pieces. I'm trying to prevent that combustion.

Today is so hard.

The Invisibles, a new film by Pixar & Disney

Idea Pitching

A young woman walking with a crutch approaches a heavy-set cigar smoking man at an outdoor cafe setting. The street is busy but the fenced off al freco dining allows her to approach him. His tie costs more than her food budget, but not quite as much as her doctor bills for this month. He's busy thumbing through scripts, chasing each rejected pile of papers with a thrown back sip of scotch, easy, over ice.

She hands him her soon to be discarded pile of paper, the title page reads: The Invisibles.



Unlike The Incredibles, there are no masks or capes or stretchy, lycra suits (now dry-cleanable). But the powers are similar. The hidden identities are similar. Working crappy jobs to get by? Similar again. Mothers, fathers, brothers, sisters, babies. It's all there. But there are no headline winning accolades for The Invisibles.

‎"The Invisibles" are people with Hidden, Silent or Invisible Autoimmune Diseases who do not necessarily look like they have a disability, so they choose to hide their disease. They work as hard, if not harder, than the average healthy person, but their lives are riddled with pain, rejection, uncertainty and the blase attitude aimed at them.

Most people couldn't match a face to an illness, because there is no face for most autoimmune illnesses. The woman with the crutch has MS. But to other people, she's just that lady with the stick. Did she fall and have an accident? Was she drunk? Stupid, careless woman costing us all money. If only she'd...

Helen: Now it's perfectly normal...
Violet: [interrupting] Normal? What do *you* know about normal? What does *anyone* in *this* family know about normal?
Helen: Now wait a minute, young lady...
Violet: We act normal, mom! I want to *be* normal! The only normal one is Jack-Jack, and he's not even toilet trained!
[Jack-Jack bursts out laughing]
Dash: Lucky...
[Violet and Helen look askance at him]
Dash: Uh, I meant about being normal.

So, What Makes it an 'Invisible' Illness? Aren't you just being a bit dramatic here?

"According to The Invisible Disabilities Advocate, an organization dedicated to raising awareness of invisible chronic illnesses and disabilities, more than 125 million Americans have at least one chronic condition, and for more than 40 million, their illnesses limit daily activities...The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer." source

Out of those 40 million sick Americans, "only 7 million use a cane, walker, or wheelchair, making their disabilities visible."

40 million Americans seems like a seriously big number. Can that even be true?

"According to the Centers for Disease Control and Prevention, nearly one in two Americans suffers from at least one chronic disease that affects their daily lives. Diseases such as fibromyalgia, arthritis, and diabetes are often referred to as invisible illnesses because the pain many patients feel is not visually apparent." source

Even scarier, "taken together, autoimmune diseases strike women three times more than men. Some diseases have an even higher incidence in women. In fact, of the 50 million Americans living with autoimmunity, 30 million people are women, some estimates say." source

"While individuals with visible illnesses—those requiring canes or wheelchairs or causing physical manifestations (e.g., hair lost from chemotherapy, tremors and speech irregularities from Parkinson’s disease)—do encounter sociocultural difficulties, their obvious medical conditions typically engender ready support and understanding from others. However, for those with invisible illnesses, such support may not be as forthcoming. And for those with invisible illnesses that remain controversial in the medical community and public eye, support may not come at all." source



What's So Invisible About This Illness?



"Debilitating joint and muscle pain, fatigue, migraines, and other chronic “invisible” symptoms frequently characterize autoimmune and autoimmune-related disorders, such as lupus, rheumatoid arthritis, fibromyalgia (FM), and chronic fatigue syndrome (CFS), which is also called myalgic encephalopathy/encephalomyelitis or chronic fatigue and immune dysfunction syndrome (CFIDS). Although all individuals with autoimmune disorders usually encounter skepticism about their invisible symptoms from others, conditions such as lupus or rheumatoid arthritis are well-established—albeit sometimes difficult—medical diagnoses, and the general public is aware of them as such.

However, individuals with FM or CFS are not so fortunate. 'Not all chronic diseases are equal. Some are more accepted than others,' says Patricia A. Fennell, MSW, LCSW-R, the CEO of Albany Health Management Associates, Inc. 'There are more than 80 autoimmune diseases, and many can be considered invisible,' she says." source

Because autoimmune illnesses seem to be a shared general affliction with women of childbearing years, one could ask if the overall submission of women in previous generations has had anything to do with the tremendous fight for acceptance and treatment for these various autoimmune conditions. "The fact that women have enhanced immune systems compared to men increases women's resistance to many types of infection, but also makes them more susceptible to autoimmune diseases."

Since caregivers and the giving of care has been a female societal role, it makes sense for women to have helped one another through illness without any major media attention via publications or television. It was simply seen as a rite of passage, the role of young woman into caregiver. With more and more caregivers being struck with illness though, and with more attention and equality in medical treatment, more women are actively seeking medical assistance. source

"Even though there is some universally accepted knowledge about autoimmunity, its victims -- mainly women -- have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. In some families, a mother may have lupus; her son, juvenile diabetes; her sister, antiphospholipid syndrome; and her grandmother, rheumatoid arthritis." source Is the fight for acceptance, treatment and a cure a feminist issue?

Real Life Voice: "As I have metal in my back and am in pain with this I sometimes use a stick, the interesting thing is people are more than happy to let me pass or give there seat up for me. When I don’t have a stick you can forget any help."



The Boogie Monster, or The Evil Genius Behind Illness

"More than 50 million people in the United States suffer from autoimmune diseases due to an abnormal immune reaction called autoimmunity. Autoimmunity is a major cause of many chronic diseases. This number, however, does not include several brain diseases and mental illnesses for which brain autoimmunity has been experimentally demonstrated. For example, a huge population with autism spectrum disorders (ASD), Alzheimer’s disease (AD), Tourette’s syndrome (TS) and obsessive-compulsive disorder (OCD) has been found to have autoimmunity to brain. This patient population is never included in epidemiological studies of the autoimmune diseases." source

People often ask, "Oh, what caused your illness?" and it's a very good question. It's such a good question there are few answers for it. Luck? Genetics? Bad luck? Bad genetics?

When you pose an even heavier question like What Causes Chronic Illness?, you're opening a Pandora's box of opinion, and not many eliciting these opinions are actually getting anywhere near to evolving a solution to the problem.

"Research of autoimmune diseases has not revealed the mechanisms that cause this response. According to A.D.A.M, one theory holds that various microorganisms and drugs somehow "triggers" off the immune response, particularly in those with a genetic predisposition to an autoimmune disease.

Someone can experience more than one autoimmune disease at the same time." source

Google estimates there are about 5,130,000 results for the question. And, in contrast to the myriad of hypothesis to answer the question of the cause of chronic illness, there are only a few path to diagnosis.



Are We There Yet?

One of the most frustrating and emotional aspects of chronic illness is the diagnosis, or the lack of a diagnosis. I know for me personally, it took years and every time I saw someone and paid for the expertise and walked away with nothing was a massive blow.

"Getting a proper diagnosis is sometimes as difficult as living with the disease itself. Victims face problems not only because physicians often don't think of autoimmunity, but also because of who they are, namely, women in the childbearing years. As a rule, this is a time in a woman's life when she looks healthy, though looks can be deceiving. Often, women who suffer from autoimmune diseases are not taken seriously when they first begin consulting their doctors. A woman's symptoms are likely to be vague in the beginning, with a tendency to come and go, and hard to describe accurately to her physician. In a typical scenario, she is often shunted from specialist to specialist and forced to undergo a battery of tests and procedures before a correct diagnosis is made, which can sometimes take years.

According to a 2001 survey by the Autoimmune Diseases Association, over 45 percent of patients with autoimmune diseases have been labeled chronic complainers in the earliest stages of their illness. This can be devastating to a young woman who may then begin to question her sanity as she tries desperately to find out what is wrong. Tragically, many of these patients suffer significant damage to their organs in the meantime and end up carrying this health burden with them for the rest of their lives because of the delay in diagnosis.

If the public, particularly women, and medical practitioners were more aware of the genetic predisposition to develop autoimmune disease, clearly there would be more emphasis on taking a medical history regarding autoimmune diseases within the family when presented by a patient with confusing symptoms. Earlier screening of these diseases could not only prevent significant and lifelong health problems but also actually prevent some autoimmune diseases." source




The Skeptics

Often, simply informing others about a medical condition is not enough explanation. "There are substantial differences in how individuals are viewed culturally and socially, depending on their diagnoses. Diabetes, lupus, heart disease, and cancer may all be considered invisible illnesses, but “no one would ever consider questioning the limitations of an individual who says [he or she has] one of these diseases,” notes Fennell. Yet, this happens frequently for those diagnosed with FM and CFS, she says. According to The CFIDS Association of America, the condition’s name trivializes the illness as little more than tiredness, even though the illness is associated with a “constellation of debilitating symptoms.”

I don't think people mean to be hurtful or ignorant about medical conditions, especially long-term painful ones. I think they just assume there's an answer to the question.

Take 2 of these and call me in the morning, went the saying. An aspirin a day keeps the doctor away. Lots of older people have mantras to health. In my day we smoked and drank and nobody got cancer.

Well, we know that's not true. You just didn't know you had cancer.

And it's the same for chronic illnesses. You didn't know you had it. You had it, and empirically we can look back and diagnose people with illnesses, it's just that you didn't know you had it. So you weren't expecting anything more than what was thrown at you.

Today, we can tell how many micrograms of iron you're lacking with a simple test done in 15 minutes.

Another helpful source of contention for our skeptics are the number of doctors and health related shows on tv. Someone is always handing out an answer and there's always a nifty little ending, endearing and heart-warming, all wrapped up in a 42 minute episode. If Dr. House can cure FMF, surely ANYONE can now that we've watched it on tv!!

When the FMF episode aired, I received a lot of emails and a few phone calls from overseas. Oh, they'd announce, almost ecstatic, there's this drug called COLCHICINE! And it cured them!!

And I'd have to break it to them that well, yeah, colchicine is effective in a lot of symptoms, but mostly it helps with the kidneys and doesn't do a lot else. And there's no cure. It's a lifetime sentence. Oh, and it makes you poo a lot.

So, when someone hears that you've got some chest pains and ongoing inflammation in your joints, they think back to an episode of The Doctors in which we were all told how fish oil helps to STOP inflammation. Or Dr. Oz told us that arthritis really only affects those 65 and over. And, if you're lucky, someone will hand you some colchicine because it helps cure diseases.

It doesn't forgive them for the stupid things they say, but they truly don't mean it. They're suffering from a bad case of Misinformation. Unless they have hearts of concrete, which a lot of them do, and they do honestly delight in younger people than themselves being sick, miserable and almost dying. I like to call them ogres, or trolls depending on the day.

Deborah Barrett, PhD, MSW, agrees: “For many invisible illnesses, there has been more understanding, attention, and validation from the medical community...in terms of public awareness and acceptance." source

Skeptics also seem to take issue when a sick patient rejoices in a diagnosis. See, she's managed to make herself sick enough to trick a doctor. She just wanted the attention. How can you be HAPPY to be so sick?

Dr. Elvira Aletta responds: "There may be a difference in how we respond to a diagnosis if the onset of the illness is sudden as opposed to insidiously appearing over months, if not years. It is common to hear from people who have lived with painful symptoms without a diagnosis to actually feel celebratory when they are finally given one. It would be understandable if that were not the reaction of someone who suddenly, 'out of the blue', discovers they have serious heart disease or cancer." source



How Did You Get So Sick? or What Did You Do to Deserve This?

In my time as a chronically sick person, I've run into people who have posed some interesting questions. One of my least favourite experiences in life was meeting with a woman who, when finding out my twin loss was *only* a first trimester loss, she proceeded to rip me a new arsehole. Because a real loss is after 22 weeks. And, she finished, aren't I lucky I don't have cancer.

Now, this particular day sticks in my head because it was one of the first full outings I did to get veggies and fruit from a local farmer's market. I had been preparing myself by doing 10 minute walks 3 times a day to gain the endurance to do this Farmer's Market trip.

And she cornered me in front of the chicken man, who sold farm fresh eggs and chicken. Hence the name, Chicken Man.

He looked embarrassed, ashamed that this woman was yelling at me for having the GALL to feel sadness around my twin loss and for telling people I was sick. After all, I could have cancer, you know, a REAL sickness.

We were at the farmer's market with friends and their baby boy, and when I sat down and told them what had happened, no one moved. I desperately wanted someone to go up to her and tell her to fuck off and die, but no one did. Instead, they all just murmured about illness and people not understanding.

That moment proved to me that there are people who *get* pregnancy loss and chronic illness and there are people who really don't deserve more than the shit on their shoes.

And since that moment, I really have very little time for people peddling me crap ideas.

I once had a woman selling Ganoderma mushroom paste ask me if I believed I made myself sick.

And I told her honestly, No. No I don't believe I made myself sick. Now, I'll be the first to tell you I'm not an optimist. I'm a realist. A pessimist in a nice, nifty new coat.

I had a bad upbringing. I suffered through miscarriage and infertility. There was a period where I didn't conceive for a year and a bit, followed by a string of miscarriages. I had a bad birth. And I lost more babies. I got sick. I'm still sick.

Nope, not much to feel joyous about, but I wouldn't relegate myself to the 'causes illness to happen' thinking. Personally, I think that's a bunch of garbage created to sell products and prey on people's fear, insecurity and sadness.

Yes, we've all met that person who is so negative despite all the good in their lives. And conversely, we've met the person who is so happy despite all the shit that rains.

Even more so, we've all met that person who said, oh, I can't do it and they didn't. Or prayed for help and they did do it, well.

Yes, there is a mental aspect of it. We are living, breathing organisms that are complex. Our brain is as much tied into our physicality as it is our mental thoughts and our emotional feelings.

If you're having a bad day, you're probably going to feel more sore, or anxious or helpless. Just as, if you're having a good day, you tend to sort of 'forget' a few of those niggles.

However, you didn't CAUSE this disease. You didn't bring it on yourself by having a Big Mac every Friday for a month. You didn't wish for a lifetime of pain and hardship by hoping that horrible bitch at work got a flat tire.

While we are beings in the infantismal flow of life, let's face it, we're not that powerful. Really, we're just some mould that got lucky in the evolution stakes and we managed to learn behaviours that enabled us to grow, mate and evolve.

To say that I am so powerful as to genetically alter my DNA for bad purposes is to say that I may as well go outside and end the droughts in Africa.

I believe there is a lot to the physiological malfunction of the body and the connection to poor physical form. That's why massage feels so good and how a chiropractor can relieve a headache or a backache. I think we have moved a lot from our natural, normal positioning by sitting and reclining. You can learn a lot by reading about proper physical functioning on some really good blogs. Investing in taking care of your body can relieve lots of pain, but it can become a long-term costly facet of care.

However, all that mental blaming is detrimental and whether you are or are not at the root of your own illness has very little to do with autoimmune disease and autoimmune arthritis or chronic muscle burning. There are a lot of people out there peddling products and services to help you overcome the problems you've caused yourself, or so they say.

Yes, let's be forthright with it. We're sick and we've all had a bad day or so. Maybe it's made it worse and maybe it hasn't. But, it does not give anyone a right to prey on someone's fears and insecurities. And it gives NO ONE the right to blame you for being sick.

Coping mentally and emotionally is going to be one of the best ways for you to have better physical days. Having better physical days is going to be one of the best ways for you have better mental and emotional days. It's a circle. It can't be broken off or segmented away. There is no room for BLAME in healing.

Coping With Chronic Illness by Dr. JoAnn LeMaistre is a very important article to read.

This is a fantastic article by by Mark Grant, MA.



Don't You Have a Doctor for That?

The best system of care is in which the patient feels understood. If the patient has pain, but has a doctor who acknowledges the pain, who sympathises, the patient goes away with a better feeling and understanding of the pain, the limitation in 'curing' or stopping the pain and an overall better prognosis.

The doctor-patient relationship is as important as a husband-wife relationship in the long-term care of a patient. That's why if your doctor is crap, you dismiss him/her and you seek someone else. In a system in which this model of care, turning to your GP for every path of guidance, is the rule, finding a good doctor is almost as difficult as finding ancient coins washed into the sand at the beach.

For me, in order to see a specialist, I must get a referral. And my referral is to either a public doctor or a private doctor. Because I have insurance, I often go private. Well, actually, to tell the truth, I've never gone public. For anything, other than birth. And that didn't go so well.

My relationship with my GP is paramount in regards to my care. This is a doctor who sees more files on me than I actually wish, but knows the ins and outs of my health almost as much as I do. It's taken years to find someone I trust so much. However, I wish it wasn't so doctor centric. I wish the health care model allowed me to nominate a physiotherapist as part of my initial response team, so as to get the quality recovery and joint protect I need.

In addition to the doctor-patient care model, there should always be the so-called "fringe treatments" that make up the core of your care: Physical care, Mental Care, Emotional Care. Music, craft, friends, family, photography, sewing, animals, stretching, yoga, sleep, vitamins, minerals, talk therapy. You need to combine the allopathic with the natural, with the alternative, with anything that matters a lot to you.

There are ways to ensure you have a better health picture overall, despite your constellation of symptoms, no matter how maddening.

If you can openly grieve, name your anger, vent in a safe and finite way, actively and physically challenge yourself and emotionally support yourself, you will feel better. And that involves a lot of people. Talk therapists, a physio, group supports, social activities, friends, family, pets.

It's almost too exhausting to try and create a better health for myself.



It's All in Your Head.

Here’s the thing about depression and chronic illness. It’s not depression if you are adjusting to a major loss. That’s called grief. Grief needs time to process. Allow yourself that time to mourn, to be angry and sad about what you’ve lost. You need time to accept the new reality.

But at some point, grief can morph into depression and that can make your physical illness worse.

-- Dr. Elvira Aletta

I usually laugh when someone suggests my illness is all in my head. I don't hear much of it now, but I did. And I heard it even more from doctors, so called 'specialists' about my daughter. Now, I even find myself laughing when I hear someone lament that a doctor told them that it was 'all in your head'.

We must remember that people thought women were hysterical monsters, fit for nothing more than the sanitarium, during their periods. This hierarchical stigma of the male diagnostics of women is centuries old. And, when your symptoms don't fit their nice, neat tucked away manual, well, you're nothing more than that hysterical woman in need of a straight jacket and to be tucked away, nice and neat, away from causing them concern.

But, we do need to accept that there ARE mental symptoms in conjunction with physical symptoms. Of course there are! We are living, breathing organisms. We cannot simply turn off the brain in regards to physical symptoms, in as much as we cannot turn off our emotions when we feel pain.

Depression, and let's just clear the water, is commonly found as a co-morbid symptom of any ongoing illness. How can it not be? People become depressed over once in a lifetime changes. This is an ongoing, chronic, every day for the rest of your life issue. It's OK to say you have been or you are depressed in conjunction with your illness.

"Dr. Elvira Aletta suggests that one or a combination of the following factors can affect the emotional and psychological well being of those diagnosed with a chronic illness, and contribute to depression.

The situation. Loss. Grief.
Changes in appearance, mobility, independence.
The illness itself may have depression as a symptom.
Pain and fatigue.
Side effects of medication and other treatments.
Social pressure to appear okay especially hard if there’s no diagnosis." source

The role of denial cannot be ignored either. When you spend your entire day pretending there is nothing wrong, despite there actually being something hugely wrong, the mental, emotional and physical toll is exhausting.

There are a lot of treatments out there that can attempt to curb both the mental distress as well as reduce some of the physical symptoms of ongoing illness. I know quite a few people who use antidepressants for muscle control as well as anxiety or depression. Lots of people have had success getting outside and back into society, despite their illness, once they've successfully mastered antidepressants.


It's probably the most personal facet of your care and it's ok to ask for help.

Real Life Voice: "I try to pretend this hasn’t happened. My attempts to restore equilibrium lead me to think some moments or even hours that I do not have this disease. I pretend. My family pretends. Then I seem to have to start all over with my family, my friends, my life, again experiencing the shock, the uncertainty, the disruption, the striving and the acceptance."



The Silence

While numerous and highly visible campaigns have worked hard to educate the public about the plight of those with invisible illnesses, there will always be a hesitancy about it all.

If you know I'm sick, will you still treat me like you did before you knew?

_____Will our friendship change?

_________Will you want to date me?

____________Or will you think less of me?

_______________Will I become an inevitable burden to you?

That feeling of being a burden, to you, to life, to society, to my family, to my friends, to my children, to future generations is what keeps me, and countless others, quiet. If I complain, will you think I am not grateful for the help I receive?

If I complain, will you tell me all the things I *should* be grateful for? Will you decide not to help me for fear I might complain about needing help?

If I am quiet, and don't complain, and then you tell me I should have said something, who is helping whom?

It's profoundly complicated.

There was a very black time in my journey when I didn't want to get out of bed. I couldn't. It hurt. I couldn't eat. The medication was making me sick. I hated freely and I didn't care who I hurt. All I wanted was the permission to die. I had broken it down into 2 reasons. One, I didn't want to live if living hurt so much and because I felt like such a burden.

I hadn't dreamed that I'd get married and have children and become a huge, physical, mental, financial burden to them. That wasn't what I signed up for. That certainly isn't what they signed up for. And the cost was escalating out of control. There was no help available.

As a society, we are raised to become self-sufficient. I was told it was the goal of a good parent: To create a self-sufficient 18 year old who could go out and fend for himself.

Some societies and governments work to provide for those less sufficient. I'm lucky to live in one such society where the bulk of my medical care is provided by the taxpayer. And I hope it's something that catches on globally. But there is a great and paradoxical disgust of people using these services.

"None of us struggling with chronic illnesses want to appear visibly disabled to our friends, family or co-workers (or for that matter to total strangers). So, we learn to adapt and become adept at fooling onlookers, along with keeping helping hands at arm's length. Its a hollow victory though.

Sooner or later we all need a helping hand even if we are reluctant to admit it. It is not always easy relying on the kindness of others." -- source

Real Life Voice: "My Social Security Disability application was approved. I’ve been told that only 30% of first-time requests are granted disability payments. I’m obviously relieved and grateful to qualify for social security. My initial reaction to all this news was something like … “Great, I’m approved for disability!”; followed by … “Crap, I’m approved for disability!”



Give Me a Call if You Need Anything

If you are wanting to help a friend or family member with aspects of their ongoing illness, I ask that you read this open letter so that you can understand some aspects of living with an ongoing illness.



“Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one.”
― C.S. Lewis

One of the things that heals the wounds is time. And what makes time so worthwhile are the people we spend it with. I feel so tremendously grateful for the friends I have had, over time, and hope to keep. It doesn't mean they've always done or said the right things, but they care.

When a woman loses a pregnancy, a baby or an infant, one of the things we like to educate people to say is very simple. I'm sorry. I'm sorry for your loss.

And, if you don't know what to say, you simply say: I don't know what to say right now, but I am so sorry for your loss.

And it's the same with most loss. You verbalising that I have had a loss is what is most important. You accepting my loss with me. I know you don't understand it fully. But I know you care.

We have a habit of wanting to quickly rush in and fix it all. Smooth it all over. Remove the pain. Curb the inconsistencies. Flush out all that is wrong with the world today. And you can't do that with chronic illness.

I will still be sick tomorrow. My house will still be a mess. My bills won't be paid. I won't have extra funds. My yard will look like a primitive jungle and to be honest, I don't have the time, the energy or the consideration to really care. It bothers me, oh it gets under my skin like you wouldn't believe, but I want to spend my time and my energy and my consideration on what is important to me.

Once, when I was part of an early childhood setting, a mother had an unsettled baby. I offered to come over after lunch and play with her older child or the baby while she slept. She scoffed very loudly: You?! Of all people, you!!

I think that did more to ruin bits of me than anything else at the time. I had been working so hard to have energy and stamina and it would mean a lot TO me to help. It also would have meant my daughter would have had a playmate for the afternoon and I would get to hold a baby, something my heart yearns for.

But no. All she could see if that this sick woman was offering to help. How bad a situation must she be in for a SICK woman to offer to help. At that moment I wasn't actually a human being. I was a subject of her pity. No, no, no. She wasn't going to be having a SICK person helping her, she wasn't that desperate! I was the desperate one, what with being sick and all.

What she didn't know is that I'm quite good at settling unsettled babies, as I've had one myself. And that it would have done us both a world of good.

I'm not saying to let disabled people come into your life just because you feel bad for them, but don't write someone off just because they physically aren't perfect. I'm still a mother. I'm still an academic.

Don't be put off when I tell you about my illness. I'm letting you know, ahead of time, for what's going to happen to me. It, however, doesn't lessen WHO I am.

So, to help me, is to let me back into life. Don't try and protect me from failing. I already know I'm not going to be perfect or that I'm going to flounder. But so do other people. Let me back into life.



* Rest Ministries has an excellent article on things TO say and things NOT to say. They also have a great article on how to help your friend or loved one.

* 50 ways to help a chronically ill friend

* Reach Out Australia has some good ideas too.

Seriously, the two best websites on Chronic Illness are But You Don't Look Sick and the Invisible Illness Awareness Week blog.

Your Illness Is Not Your Fault by Tamara Staples here

Five Simple Words to Keep Chronic Illness at Bay by Madeleine Parishhere

For more information, and support, like the Invisible Illness Awareness Week Facebook Page.

5 Rules for Living Well with a Chronic Illness -- source

The Roulette Wheel of Diagnosis

Dear body, I'd reeeeally like to go to the library today. Could you please stop hurting? Please? (The short answer was no.)


Part of living with something no one understands is that you don't understand it either. You probably 'get' it more than others, but because there is no standard rule, no benchmark to gauge your own normalcy, you always find yourself questioning it. If I hear about Vasculitis, I immediately go re-google it to make sure I don't secretly have it and my rheum missed it.

(PS. If you or someone you love has vasculitis, the John Hopkins vasculitis resource online is AMAZING.)

It's like diagnosis is a roulette wheel. Every time you hear of something, maybe, truly this is it! You race online to see what the symptoms are. Oh hey, that sorta kinda sounds like me. Maaaaybe this is it!!

Nope. No. It isn't. Ok. Next!

House, MD was truly epic for me because people would watch an episode and send me an email. Oh Jen, have you tried Wegener’s Granulomatosis? they'd ask. If I had I'd reply yes, and if not, I'd add it to the list of other possible diseases I'd take to the rheum.

Then, I'd open my speech by saying, "I'm sure you've considered Wegener’s Granulomatosis, but can you tell me why this disease doesn't fit my symptom?"

If it was my trusted Rheum, he'd take a breath, brain going through a million neural file cabinets and comparing my notes to his stored data files. Sometimes he'd actually hold his breath while thinking. I don't enjoy this patient induced torture, truly, but it does make me pleased to have a smart doctor.

Generally, everything comes down to my brain MRI and my lung x-rays and that incredible LACK of elevated anything in my labs.

MRI of brain with TRaPs:




Me:




Depending on who I'm having my appointment with, I can be quite forward and say, "So, let's say this is an atypical presentation of xyz, what is the treatment?"

And believe it or not, the majority of treatments are the same.

Weight loss
Light physiotherapy
NSAIDs
Steroids
Plaquinel
Immunosuppressives
And, if you're lucky, injectable biologics.



Occasionally, like with Familial Mediterranean Fever, you might stumble on success with Colchicine, but it's very rare for a single drug to be SO effective for a disease.



When House did an episode with a father and daughter having Familial Mediterranean Fever, my diagnosis at the time, I received so many emails about it! We didn't see the episode for at least a year, but it was frustratingly amazing that the show featured FMF.



Of course, the father and daughter make a 100% recovery of symptoms after being treated with IV colchicine.

When I saw the episode, I swore off the show for the season. It was so demoralizing that a chronic, incurable condition was waved off with a magic wand of a day of IV drugs. IV colchicine is a last resort, and most patients will still have symptoms of the disease after the acute treatment. They are STILL sick, every day, because it is a Genetic condition. Not a once in a lifetime acute illness.



This is the daily battle of life with a genetic illness. There is often no reprieve from the symptoms, but like everyone else, there are good days and bad days.

At the moment, I am severely fatigued. There just is not enough oomph to force these muscles to work. It's definently a Spoon Theory day for me.

Aside from the fatigue, my muscles are burning all over. In my arms, in my legs, in my chest. I've got that heavy band feeling at the back of my head. I want to be up and active. I want to do so much more. But the burning is practically crippling at times. And then, oddly enough, it abates for a few hours only to come back.

I'm making cottage pie for tea tonight. I love any excuse to have mashed potatoes. However, there is a lot of chopping involve. I've broken it into chunks, approximately 90 minutes apart. You'd think it was a military operation, but no. That's life living with chronic impairments.

I'm feeling quite disappointed with myself in regards to my weight. Last year I felt so healthy and alive and lost about 14kg. My physio kept warning me that strenuous exercise can actually trigger inflammation in chronic illness, especially inflammatory illnesses. But, I didn't listen.

And spent months battling chronic inflammation in my gallbladder.


Mine isn't nearly as cute. However, if you're like me and you'd love to remember your organ as sweet, not painful, then try I Heart Guts.

I've never regained that mobility or freedom since. And, all those 14kg are back. High dose steroids for the gallbladder, fatigue and general, often overwhelming, fear of re-triggering all that inflammation has brought it all back.



I've made a goal of getting 50,000 steps on my stepper before xmas. I need to increase my cardio and try to get back some of my mobility. I'd also like to not feel like a beluga whale in a swimsuit.

Actual Photo of Me This Summer:

Chronic Ilness Cat, The Best Free Therapy Around

I am so glad you guys enjoyed Chronic Illness Cat.

Chronic Illness Cat is the brainchild of Riley, who is 14 and lives with Chronic Illness. I know at 14 I did too and it was such a foreign experience. Kudos to Riley!

If you're a CIC fan, then take heart. You too can make your own. I have yet to speak with Riley, the original CIC author, so hopefully I will do that soon (illness permitting) and we can all try to bend our arthritic knees and bow in wonder.

Find your beloved CIC Here.

And, when the moment strikes, make your own!

In the middle of the page, you'll see Chronic Illness Cat and a little generator. Just insert your text, click the English flag and press the Generate text. I've been playing with it this morning but it looks like memegenerator.net has gone offline for a wee while.

You can also 'like' Chronic Illness Cat on Facebook, by clicking here. Please be mindful that this is an open page for members 13 years of age and older, so no cursing please! Feel free to post your own Chronic Illness Cat memes there.

And, if you do, please let me know!!