Lupus and Depression

Many people experience situational depression which is a short-term depression resulting from shattered expectations such as the death of a loved one, a divorce, the loss of a career, etc.  Some people experience biochemical depression which results from a mental or physical illness that temporarily or permanently alters their biochemistry resulting in their emotions and rational thinking being skewed.  It is very important to know the difference because, as the Captain of Your Own Health, you will want to ask for medical and psychological assistance from the appropriate professionals.  In other words, it would be advantageous to meet with a psychologist to talk through the pain of loss; however, if the depression you are feeling has a biochemical basis all the talking in the world will not help you feel better.

Autoimmune diseases including Lupus, by their nature, cause a form of biochemical depression.  Remember, autoimmune diseases are defined as diseases wherein the body attacks its own tissues including the brain.  The resulting altered biochemistry causes skewed emotions.  Fortunately, by being open and honest with your medical professionals you can be prescribed one or more medications to help bring your body’s biochemistry back to a more normal state and decrease or even eliminate your depression.  It may take more than one visit and more than one prescription to achieve that result because each person’s biochemistry combined with their illnesses will react uniquely to prescribed medications.  So if you are prescribed a medication(s) for depression and find that it is not helping, go back to your doctor and let him/her know and request a different or additional prescription.  Stay open and honest with your doctor and eventually you should be prescribed the medication(s) that works best for your individual needs.

Once your body is functioning in a more non-depressed state, you can seek out a mental health professional to talk with about the significant changes that the development of a chronic, permanent autoimmune disease brings with it.  A loss or significant change of any kind brings challenges, even for completely healthy people!  Imagine how much more challenging sudden and unwanted changes bring to someone who develops a permanent autoimmune disease and no longer has the health, emotional, mental and other abilities to meet and deal with it!

I am a born optimist with a ‘can-do’ attitude.  I maintained straight A’s throughout my school career, had many friends and activities, and graduated early at the age of 17 to attend college.  I began working full-time at the age of 16 because I liked the challenge of balancing work, school, and my personal life.  The income was nice too!  I entered the U.S. Army on my 18^th birthday, finished Basic Training with a promotion, and went on to a successful military service with an honorable discharge.  When I later began working for Federal civil service I had an ambitious attitude and sought every opportunity to achieve and receive promotions.  I retired as a GS-11 and look back on a very interesting and challenging career.  During this same timeframe I raised 2 children, kept a nice home, attended college part-time and graduated with an AA, had many friends, enjoyed many hobbies, volunteered in my religious community, was a gym rat with a fit body, and more.  In other words, I was an energetic, go-go person and it was rare that I sat still and I loved it! 

At the age of 44 Lupus dropped me to my knees.  My body became a prison of pain and frustration, my emotions began to drop into a deep depression (both biochemical and situational), and my thinking became foggy and forgetful.  Overnight I was unable to rise out of bed and so had to go on extended sick leave resulting in the loss of my career my eventual early retirement on disability.  I could no longer travel, entertain or visit friends, attend church services, hold a thought for more than a split-second, remember to pay bills, accomplish the many tasks that keep a home in order, go grocery shopping, and more.  In short, overnight I became a bedridden, unemployed, lonely mess of depression and pain and had absolutely no idea how to deal with the situation.

Additionally, at the onset of my illnesses the doctor had prescribed a course of prednisone which resulted in my gaining 60 pounds.  My fit body morphed into a blob.  Half my hair fell out.  I felt pain in every part of my body.  Migraine headaches became a daily, debilitating fact and nothing relieved them for the first year of my illness.  My body was so exhausted that I slept most of the time for the first few months of my illness. 

Fortunately, my doctor had also prescribed the medication Placquinil and I still take it daily.  This medication takes about 3 months to become effective and at about the 3 month point after beginning this prescription my mental fog began to lift enough to allow me to take stock of my situation.  I was devastated that my workplace refused to accommodate me and allow me to return to work and continue my career, all but one of my friends found themselves ‘too busy’ to maintain friendships with me, my religious community asked me to resign from my volunteer duties and then I heard not a word from them again, it was impossible for me to do the daily duties required to keep my home in order, etc.  My family, including my spouse, became increasingly angry and frustrated with me and my situation.

I felt completely alone and deeply depressed and wondered if life was even worth living anymore.  I was facing the biggest challenge of my life and at the time did not have the tools to deal with it.  I spent the first year of my illnesses simply trying to understand what was going on, working to find the right balance of medications to deal with the situational and biochemical pain and depression that I was feeling, worried that I may die from my illnesses, worried that my spouse may leave me, worried that my home was falling apart without my ability to keep it in order, worried that even my last friend may leave me, worried that I would never again be the fit person I once was, etc.  I even wondered if God was angry with or had abandoned me.  It was a terrible place to be. 

This is a typical experience for people whose lives are suddenly and dramatically altered by the development of chronic, debilitating illnesses of any kind, both mental and physical.  If the correct medical and psychological assistance is not sought and found, the correct and effective medications are not prescribed and taken, etc., these people will not survive.  Approximately 10% of people who develop autoimmune diseases die within the first year of their illness.  A lucky 10% of people will find that their autoimmune illnesses will go into permanent remission after the first flareup.

For the other approximately 80% percent of people whose autoimmune illnesses are treated effectively with medical and psychological help, they can expect to live a normal lifespan and their autoimmune illnesses will be termed ‘chronic’.  How they adapt to their ‘new’ bodies and how they structure their ‘new’ lives is the challenge they face.

At approximately the one-year point of my illness I had realized that at least one of my worries could be set aside:  I was part of the 80% and would not die but would most likely live a normal lifespan.  Then came the question of how to live in this ‘new’ body and with this ‘new’ life?  I literally sat down and began to write a list of ‘what I can still do’ and ‘what I can’t do anymore’.  It was a sad but enlightening day.  I was resolved and angry at the same time.  Stupid Lupus had taken away my ability to live independently.  Stupid Lupus had taken away the future I had planned.  BUT I hadn’t died and so I decided to try to find the positives in my new situation.  I decided that Lupus was ‘just’ one more of life’s challenges that I needed to meet.  Even though it wasn’t fair, I had evidently morphed from a healthy 44-year-old into a sickly 100-year-old overnight.

How does one face this challenge?  Many studies have shown that certain personality characteristics can predict a positive adaptation to life’s challenges no matter what they may be.  Specifically, these characteristics are a person’s commitment to meeting challenges as best they can and a person’s ability to adapt and maintain effective control over themselves and their environment no matter what changes occur.

If a person believes in their ability to overcome life’s challenges, and not to be overcome by life’s challenges, they will move forward to live positive lives no matter what challenges come their way.

Certain external factors also contribute to an individual’s successful adaptation to life’s challenges.  They include:  family and friend support, sufficient financial support and resources, connection to a community (religious, educational, or other) that allows them to feel ‘a part of’ a larger community, a trust relationship with one’s assistance providers (medical, home care, etc.), an understanding that physical/emotional/mental limitations are an eventuality (think old age) for everyone and so can be understood as ‘just’ a part of life, an ability to be appreciative of and accepting of assistance for their limitations, and an ability to take stock of one’s remaining abilities and to make the most of them.

How have I adapted?  I no longer define success as over-achievement in every category of life.  I take each day as it comes.  Some days are ‘pajama’ days during which I catch up on movies, take pain meds to endure, and cuddle my pets; some days are ‘sit on my butt’ craft days during which I sew or quilt and appreciate an absence of extreme pain for just that day; some days are good days during which I can take walks, prepare a dinner, and otherwise be ‘normal’.  I accept that with the development of my autoimmune disease my old self essentially died and my new self was born and I am thankful to still have a life to continue to live.  I pursue friendships with people who are understanding of my limitations; have continued my religious learning with online resources; have continued my education with online college courses; travel by watching such shows as Aeiral America and others on cable TV; visit friends via email, texting, and Skype; and more.  I have let go of societies expectations that as a modern women I must ‘bring home the bacon and fry it up in the pan’.  I live by my own expectations of what defines a successful life.  I have let go of friends and some family members who cannot accept my situation; have let go of hobbies and activities that are now not possible; and have come to the understanding that it is completely OK to do this.

Did you know that depression can be defined as anger and frustration turned inward?  If it is necessary, get angry about your situation in order to move beyond your depression.  Demand help from all and every resource!  Make your needs known to your family and friends and ask them to develop an empathy and understanding of your situation.  LIVE!  You aren’t dead yet and so you are one of the lucky 80%!

And You Thought Vampires Were Cool!

The word Lupus is actually Latin for wolf and was coined in the late 16^th century.  However, Lupus has been documented as a distinct disease as early as ancient Greece when the famous physician Hippocrates, who was born in 460 BC, observed and wrote about the red facial rash which is one of the classic symptoms of Lupus.

There are two theories as to why the word Lupus was given to the disease:  the red facial rash was said to resemble the facial markings on wolves, or the same rash was said to resemble the wings of a butterfly.  The butterfly theory is why it is often seen as a symbol for the disease.

Can you see it?  Maybe Lupus was the inspiration for the development of the Werewolf mystique?

Little new research was done on the disease of Lupus until the mid 1800’s when Viennese physicians Ferdinand von Hebra and Moritz Kaposi observed and wrote that not only did Lupus affect the skin but also appeared to affect the organs of the body as well.

In 1894, an English physician named Thomas Payne discovered that the administration of chloroquine significantly improved the symptoms of the discoid form of Lupus in patients, as well as positively affecting joint pain and fatigue which are symptoms of Lupus as well.  His discovery paved the way for the development of drugs termed ‘antimalarials’ which are also used in the treatment of the disease Malaria.  The most commonly used antimalarial used today is the drug hydrochloroquine, also known as Placquinil, which is prescribed for more serious cases of Lupus.

Also during the late 1800’s, a Canadian physician named Sir William Osler studied and wrote the first complete treatises on Lupus, in which he expanded upon the symptoms of Lupus to include fever and body aches and the involvement of the central nervous system, the muscles, the skeleton, the heart, and the lungs, thereby redefining the disease of Lupus as being systemic (affecting the entire body).  He also discovered and wrote that Lupus is a disease that can relapse and then flare up at periodic intervals.

In the 1920’s and 1930’s, a New York City physician, working at Mount Sinai Hospital, wrote the first detailed pathological description of Lupus in which he defined it as a ‘collagen disease’ which led to our modern classification of Lupus as an autoimmune disorder.  Collagen is found in the body’s fibrous tissues such as skin, ligaments and tendons, as well as in the bones, blood vessels, the cornea of the eye, and in the gut.



In 1946, a pathologist and physician working at the Mayo Clinic named  Malcolm Hargraves, observed and wrote the first description of a cell that is affected by lupus, known as an LE cell.  His work led to the means of faster and more reliable identification of Lupus.  A colleague of Dr. Hargraves was Dr. Philip Hench who discovered the hormone cortisone while studying the disease rheumatoid arthritis.  Cortisone was tried as a treatment for Lupus and was found to positively affect the disease.

It was not until 2011 that the first new drug was developed for the treatment of Lupus, but there is still no known cure for the disease.  Lupus is still considered a mystery to medical researchers, the cause of the disease remains unknown, and many medical professionals believe that Lupus may actually be a combination of several autoimmune diseases rather than one single disease.   Researchers have found evidence that Lupus is caused by a combination of genetic and environmental factors (including ultraviolet light, bacterial and viral infections, medications, diet and stress) and that Lupus runs in families, meaning that certain inherited genes predispose sufferers to the disease.

Those who suffer with Lupus can improve their quality of life by understanding the disease, following the recommendations of their medical professionals, and keeping a positive outlook.  Because Lupus ‘flares’ up and goes into remission randomly, it can be frustrating to keep a positive outlook but by learning the triggers that cause flares (stress, exhaustion, poor diet, and more), sufferers can learn to minimize the occurrence of flares.  Flares are often preceded by periods of dizziness, skin rashes, and fevers.  When any or all of these symptoms begin it important that the sufferer immediately take steps to avoid a flare by resting, improving their diet, limiting stress, and more.  Additionally, constant contact with their Rheumatologist will help them to manage the disease.

Additionally, it is critical that sufferers of Lupus take the following steps to improve their health and therefore their symptoms of Lupus:  quit smoking; get regular exercise (walking, stretching, and swimming are best); get plenty of sleep and rest; avoid exposure to the sun; avoid fluourescent lights which give off UV rays (similar to the sun); maintain good hygiene to avoid infections; learn to manage pain with appropriate prescription medications, biofeedback, self-hypnosis, acupuncture and other methods; treat your depression (a common symptom of Lupus) and other mental and emotional issues (a stressed mind creates a stressed body); minimize the frustration of forgetfulness which is a common symptom (often called Lupus fog) by developing daily planners, to-do lists, etc., to keep you on track; and be sure to eat a healthy diet.

Reality in Love

“  . . . for better, for worse, in sickess, and in health . . . “  Remember those words from your or a friend’s wedding?  They are full of promise; full of the expectation that the one we love and who we believe loves us will always be in our lives.  Not so.  The divorce rate among partners where one of the members is chronically ill is 75%.  Why?  Because for the chronically ill the burden of failing to meet their partners’ expectations is overwhelming.  For the partner of the chronically ill, it is a huge responsibility that wears upon their feelings of love, regardless of how much they do love the chronically ill person.
In all marriages, of course, both partners will eventually go on to develop health problems.  But when one partner develops a chronic, debilitating illness in their 40’s-60’s, it can create in the other partner a feeling of having been cheated out of the rosy future that was imagined by both partners when the marriage was formed.
All marriages are formed in the expectation of a rosy future.   Imagine how difficult it must be when one, or even both, partners go on to develop a chronic illness.  Dreams are lost, expectations are dashed, and the future is made unsure.  Imagine even more when one of the partners develops an illness that seems to be physically invisible to the other partner.  This is the case when a partner develops an autoimmune disease which does not readily display its physical effects.  The healthy partner may feel that their ill partner is just being a faker or manipulator.  The healthy spouse may feel an incredibly difficult burden to ‘fix’ their newly-chronically ill partner.  They may feel that they have an unfair percentage of housework, childcare, financial, or other burdens has been placed upon them due to their partner’s dubious illness.  The ill partner may feel a continuous need to pretend that they are not ill, that they can indeed fulfill their healthy partner’s expectations, and this can lead to both partners failing to really understand the others’ needs.  Both partners feel that they must be ‘on’ for their partner, regardless of their real feelings.  The healthy partner may feel that they must put in extra hours to manage the home, finances, children, etc., while the ill partner may assume an unfair burden of guilt for an illness over which they have no control.
Will the partnership survive?  75% of these partnerships fail.  Feelings of frustration, guilt, anger, and more quickly destroy any love that was present at the beginning of the partnership.  The partners think first of their own needs first and fail to understand the needs of the other partner.  Most marriages begin with feelings of hope in the future.  Couples meet, plan futures, marry and share family events, perhaps have children, celebrate holidays together, etc.  Then one day one of the partners suddenly becomes chronically ill.  The words ‘in sickness and in health’ become very real.  The couple, who once thought nothing of late-night dates, drinks after dinner, dancing until dawn, finds that activities must end as early as dinnertime for the newly-chronically ill partner.  Parties are no longer possible if they extend beyond dinnertime.  Evening activities with family members must be handled by the well partner only.  Depending on the previously negotiated separation of partnership responsibilities, the well partner may suddenly find that responsibilities assigned to the newly-chronically ill partner are no longer being handled in a timely manner; bills are not being paid on time, grocery shopping trips must be postponed, laundry is not done in a timely manner, etc.  The well partner begins to complain to the chronically ill partner about his/her lack of meeting their understood duties of the relationship, the ill partner’s self-esteem plummets, aggravating the already negative situation.
Frequently the newly-chronically ill partner begins a huge learning curve to understand their illness(es), while the well partner still is not convinced that the ill partner is actually ‘that’ ill.  Fatigue limits activities, weight gain and fatigue limit intimate moments between the partners, and side-effects of necessary medications or surgeries may cause unattractive weight gain or other health issues that the well partner may find unattractive.
The well partner feels an unfair burden of financially providing for the family while the newly-chronically ill partner ‘sits on their butt all day at home.’  Frustrations build, anger flares, and soon the formerly happy couple is in trouble.
Can these issues be resolved and can the marriage be saved?  There is a slight 25% chance.  What to do if the partners decide that the marriage should be dissolved in order for the partners to individually pursue their best futures?  Or perhaps the well partner may decide to ‘explore their options’ by taking a work assignment out of state or country, taking on an extra-marital lover, or otherwise stretching the bonds of the marriage.  He/she may explore options for a new future or a revised plan for the existing future with their newly-chronically ill partner.
All the while, the newly-chronically ill partner may decide that it is futile to try to save the deteriorating marriage, may withdraw even further into a depressed mindset.   He/she may fail to thrive, may cut off contact with family and friends, and may even contemplate suicide because of overwhelming feelings of guilt and frustration.
It is very important that all partnerships wherein one or more of the partners become newly-chronically ill engage in professional counseling.   The goal of the counseling need not be pre-determined but must be open-ended and at the end of the counseling hopefully both partners will have a better vision of their personal, and the partnerships’ future.