Five Things I Don’t Admit On My Bad Days

Hope Despair sign

Have you ever had a day when you just stared off into space?  Not staring and thinking deep thoughts about your future, but empty. Random thoughts floating around occasionally, but nothing coherent.  And definitely nothing cheerful!

This is the place I am in right now.  My brain has just shut down.  The chronic illness has become too much to handle at this point and my brain went bye-bye.

Cat hiding from chronic illness

So, I thought I’d let you into the taboo side of pain and chronic illness.  The stuff we -or at least I- really don’t want to admit.  The thoughts we have when our brain and body are at their lowest.

     1) I am tired.

That’s why my brain shut down.  Fighting pain is hard, and those of us in daily pain don’t ever get to rest.  The constant struggle of trying to stay physically in control of our pain is draining.  Add to that the daily demands of running a home, a career, or raising kids and you have the perfect storm for extreme fatigue.  Add extreme frustration and we crack.  And it doesn’t necessarily matter who gets in the way when it happens-sorry!

     2) I am sad.

Because I am in pain and I cannot control it or my reactions today.  But life goes on.  So does family discord.  My husband and I are no different.   And to be honest, I don’t always have the fortitude to deal with it, whether it’s about a burnt dinner or the several hundred bucks he just lost at the casino.  I’ll end up in a puddle of tears.  Pain makes everything personal and much more intense.  So the small stuff becomes huge and nastiness gets easier.

     3) I am depressed.

It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty… I could go on, but you get the point.  Obviously, I have accepted my chronic illness, but these diseases are progressive and constantly change over time, so we have to constantly readjust our acceptance of what they have done to us.  But the feelings that go along with this process have to be experienced as well.

Waving Hands

     4) I am confused.

And confusion is very frustrating.  You see, my body remembers everything it used to be able to do.  From dancing to hiking through the woods to carrying stuff up and down stairs.  So sometimes, I still think I am capable and try to do things expecting that I will still be able to.  And, at this point, I usually can’t, which has really just caused me more problems.

     5) I want to give up.

I know the facts about my disease.  I know what my back injuries mean.  I know what the future probabilities are for my disease progression and pain management.  And I worry about where I will end up when I can’t care for myself. I worry because I am alone a lot already. And I’m scared. I think about giving up a lot, too. I don’t talk about it, but I think about it. We all do.  It’s a way to end the pain.  It’s just not a good one.

Bad Day Bridge

In the end, when my brain gets like this, what I really need is some sort of regeneration. It’s too easy to continue that downward slide when we acknowledge our dark side.  So here are some ideas for pick-me-ups after your day or so working through the harder emotions having chronic illness brings to us all.

Watch a mindless funny movie -my fave is Zoolander!

Find funny fail shows on TV-I so love dumb criminals!

Watch kittens on YouTube-you must admit cats getting scared of hair clips is hilarious!

Bundle up and rest with aroma lotions and tea!

     And remember: these “lost brain” days don’t last forever, they’re not as common as they may seem, and they do not control you.  After 20+ years of this, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset. The negativity gets acknowledged, then let go. And that’s exactly what needs to happen in the long run!


Sharilynn Battaglia

Born and raised in Rochester NY,  I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. My medications, in turn, have caused me to endure two back fractures. I raised my kids, worked a career for over 30 years, and been a wife to my husband of 27 years all while being diagnosed with an autoimmune disease for 22 of them.  I can no longer work but I do volunteer at an animal rescue organization as a kitten cuddler and I write about my  experiences with my diseases while wrangling our one rescue dog and three rescue cats.

Sjögren’s Syndrome


Sjögren’s Syndrome, named after Dr Henrik Sjögren a Swedish ophthalmologist, is a chronic autoimmune condition which destroys the lacrimal and salivary glands, which produce tears and saliva.

The damage is done when the body’s own white blood cells attack the glands, and results in conditions known as ‘dry mouth’ and ‘dry eyes’ (xerostomia and keratoconjunctivitis respectively).

Although the condition can be classified as either primary or secondary (depending on the absence or presence of any other connective tissue disease) this has no bearing on the particular symptoms a patient will experience, nor on the severity of those symptoms.

Signs and Symptoms

The single most significant symptom of Sjögren’s Syndrome is generalised dryness – particularly of the eyes and mouth, although this may extent to the skin, nose and other organs of the body, including kidneys, lungs, liver, and even the nervous system.

It is possible for Sjögren’s Syndrome to develop over a number of years without being diagnosed, as these common symptoms are often attributed to a dry environment or reaction to food or medication – or simply as a side-effect of the aging process.

Some patients will develop only mild symptoms, whilst others may experience more serious manifestations of the disease. As with other autoimmune diseases, Sjogren’s Syndrome can go into remission spontaneously or may require treatment.


Causes of Sjögren’s Syndrome

Like many autoimmune conditions, the exact causes of Sjogren’s Syndrome are not yet fully understood. However, existing research suggests that it is brought on by a combination of genetic, environmental and other factors.

Genetic Factors

Families of those suffering from Sjögren’s Syndrome have been seen to present a higher than average occurrence of other autoimmune diseases which leads experts to believe that there is a genetic factor involved.


Hormonal Factors

Sjögren’s Syndrome is more commonly observed in female patients, suggesting that there is a hormonal element in its causation. Studies have suggested that estrogen-deficiency can be one contributing factor.

Other external factors, such as glandular viral infection, may also be linked with the onset of Sjogren’s Syndrome, although research is continuing in this area.



Diagnosing Sjögren’s Syndrome can be complicated by a number of factors. In particular, as the condition generally presents in those aged over 40, the early symptoms of dry eyes and mouth are frequently dismissed as part of the aging process.

Because other symptoms can affect different areas of the body, many patients initially seek with their symptoms help from different specialties, making diagnosis difficult.

In addition, many of the symptoms are also associated with other autoimmune diseases, further complicating the diagnosis process.

There are a number of tests that can be administered to diagnose Sjögren’s Syndrome. The ‘rose bengal’ test measures the function of the lacrimal (tear) glands by placing a non-toxic dye on the eye. The Schirmer test uses a strip of filter paper placed under the lower eyelid to collect tears – its wetness is then measured to determine whether production of tears falls into the diagnosable range.

Similarly, the function of the saliva glands can be measured in a test which involves the patient being asked to spit as much as possible into a cup; the volume is then measured to determine whether the glands are functioning normally or not.



Currently there is no cure, nor is there any specific treatment that will restore normal function of the saliva or tear glands.

Consequently most treatment associated with Sjörgen’s Syndrome is designed to alleviate the symptoms are reduce discomfort.

Treatments to increase or replace lost moisture, such as artificial tears, can be prescribed to reduce discomfort around the eyes. In more severe cases, goggles designed to increase ‘local humidity’ around the eyes can be worn.

Cyclosporine may be prescribed to reduce the inflammation which inhibits tear production, and other drugs may be used to stimulate salivary flow.

For musculoskeletal symptoms it is possible to prescribe non-steroidal anti-inflammatory drugs and for patients with severe symptoms or related complications corticosteroids and other immunosuppressive drugs are sometimes prescribed.

Immunosuppressants are also used to treat systemic symptoms associated with Sjögren’s Syndrome, such as chronic fatigue and joint pain.

Often overlooked by patients is the need for preventive dental care. The lack of saliva in the mouth can have severe consequences for both teeth and gums, and xerostomia creates a breeding ground for bacteria which can lead to painful cavities. Sadly, many patients leave this care too late and it is not uncommon for dentists to see patients with severe and untreatable cavities.



Although studies in this area are still rather limited, patients with Sjögren’s typically experience only a slightly below average life expectancy.

However, Sjogren’s Syndromeit is often associated with other diseases which may impact on mortality rates, in particular a higher instance of non-Hodgkin lymphoma.

Facts and Figures

● 3rd most common rheumatic autoimmune disorder
● 500,000 to 2 million patients in the USA
● May affect up to 3% of the population globally
● 90% of patients are female
● Average onset between 40-60 years of age
● Occurs in 30-40% of patients with rheumatoid arthritis and 10-20% of patients with systemic lupus erythematosus.


Whilst Sjögren’s Syndrome is categorised as an ‘incurable’ condition, its symptoms can largely be managed through a combination of medication and lifestyle changes. As with other conditions which can result in chronic fatigue, depression is a risk and patients should make friends and family aware of their condition in order to ensure a solid support network. Although the symptoms of Sjögrens can cause complications, barring more serious secondary illnesses patients can expect to live a normal lifespan.