Living with a Chronic Illness Requires Courage

     In my last post, I discussed whether or not living with a chronic illness is heroic.  In my opinion, it is not.  Today, I want to share my thoughts on why courage is required for living with a chronic illness.

     I don't see myself as heroic for living with rheumatoid arthritis, but I do consider myself courageous for living with this disease.  This is not because I want to appear as such to others; rather, it is because there is no way to face life with RA without courage.

     Courage means facing some form of difficulty despite the fear it may cause.  Living courageously with RA means I live my life as best as I can despite my fears.  It gives me strength to handle a life filled with pain and uncertainty.  I don't know if I'll feel good or bad tomorrow.  Courage allows me to get through each day whether I feel fantastic or fatigued.

     I need courage when I visit my rheumatologist, to listen to test results and to remind myself to breathe slowly during a blood test.  I need courage to ask questions of my doctors or pharmacist when I don't understand what a drug is or what it will do for me.  I need courage to dispute medical charges on an insurance bill with people who view me as a number on a file instead of a human being.  I need courage when I interact with others who have no idea how I'm actually feeling.  Sometimes, I need courage just to get out of bed.

     Courage is essential.  Without it, I wouldn't be able to write.  I wouldn't feel like my thoughts are meaningful.  I wouldn't believe that sharing my experience with RA could educate or comfort another person.  Without courage, I would give up.

Is Living with a Chronic Illness Heroic?

     I have a friend who has mentioned to me several times that I am an "inspiration" to her for living through pain each day and enduring all that comes with rheumatoid arthritis.  She tells me she admires my strength and doesn't know if she could ever handle life with chronic pain.

     While I'm grateful for my friend's thoughtfulness in sharing this with me, I find her comments very curious.  Why does she think life with an illness, incurable or otherwise, is heroic?  Is my life really that different from hers?  Isn't everyone living heroically in some way?

     If I focus on details such as multiple medications, constant fatigue, insomnia, and visiting doctors and phlebotomists every other month, then yes, my life is probably much different from hers.  She most likely does not have to deal with the frustrating bureaucracy of the health care system.  Germs and handshakes probably aren't a huge problem for her.

     Does the fact that my life includes such details mean I am a hero?  I really don't think so.

     Honestly, I don't really have a choice in how I live my life with regard to health.  I have to take the medication, find ways to alleviate fatigue and insomnia, and see my doctor and get blood tests even if I don't want to.  This is my life.  This is my reality.  It's simply the way it is.

     So is it heroic to get out of bed in the morning even though I barely slept?  Am I considered strong when I continue typing even though my fingers hurt?  Is it heroic to say "I'm fine" when someone asks how I am, even though I am never actually "fine"?

     I think what my friend really means is she can't quite understand how I live with RA.  She would find ways to deal with it if she had a chronic illness too, she just can't see that right now. If one doesn't have an illness, one can't truly understand what life is like with an illness.  The only way is to live it.

     I see myself as no different from my friend.  I have obligations and responsibilities, bills to pay and loved ones to support.  I enjoy my hobbies, vacations and holidays.  I endure the tough times and celebrate the good times.  Every person is living with some form of pain.

     I'm not a hero, just a person who happened to wake up one day with RA.

Depression and RA

     Depression is a common comorbidity of Rheumatoid Arthritis.  Why?  For many people living with RA, chronic pain = depression.  If you're in constant pain, constantly tired, constantly reminded of things you cannot do or can't do without help, it's very difficult to remain happy and cheerful.

     I think there are three main contributors to developing depression while living with RA:

1. Constant pain: it is relentless and never easy to relieve
2. Chronic, progressive, incurable nature of the disease: it never stops, it will get worse and we still don't know how to cure it
3. Invisible illness: no one can see or feel the pain, fatigue, the stress, or the daily difficulties... and sometimes people refuse to believe or support what they can't see

     All suffering, left untreated, can lead to some form of depression.
      
     There are two main types of depression:

• Major Depression is a disabling episode that interferes with daily life for at least a two-week period.  The most characterizing symptom is thoughts of suicide or attempts to end life.  At least five of these symptoms must also be present.
• Persistent Depressive Disorder (also known as dysthymia) is less severe than major depression but has been present for at least two years.  Symptoms are similar to major depression but generally include low energy, insomnia/oversleeping and poor appetite/overeating.  Stress and irritability are usually present with this form of depression.

       It is important to find help if you are feeling depressed.  You must remember that depression is an illness, just like RA.  Therefore, treatment from a medical professional, psychiatrist or a psychotherapist is necessary.  Various types of medication and effective forms of therapy are available to help you.  Talking with a friend can help too.  Everyone needs a support system, at least one other person to lean on in times of trouble.  But if you think you are suffering from any form of depression or if you have thoughts of suicide, please seek professional help, call a hotline or go to the ER immediately.

National Suicide Prevention Lifeline: 1-800-273-8255

American Psychological Association

"You have Rheumatoid Arthritis."

     I literally woke up one day with a chronic, incurable illness.

     On December 16, 2006, I woke up with both hands so swollen I could not make a fist or hold almost anything.  I remember not being able to open my bedroom door.  I remember being in moderate pain, but I was more alarmed that both of my hands were nearly twice their normal size.  I knew something was wrong because I felt the heavy, sickening feeling in my stomach that this wasn't right, and it wasn't going to go away.

     My parents made me see a doctor.  I was never a fan of doctors and was very nervous during the appointment.  I had a full physical exam with particular attention placed on my joints.  I had to answer a lot of questions.  Then my doctor told me to get blood tests, one of which would measure something called the Rheumatoid Factor.  

     "I think you have Rheumatoid Arthritis."

     I didn't understand what that meant until my blood test results came back and I was referred to a rheumatologist.  From that point on everything seemed like a terrifying blur.  Another physical exam, more blood tests, a corticosteroid injection, a bone scan and hand x-rays followed.  I was officially diagnosed with Rheumatoid Arthritis in the finger joints of both hands a few days before Christmas.  I was immediately prescribed several medications intended to ease pain and prevent joint damage.  I was given several pamphlets explaining what RA is, how different medications work, how to cope with pain and fatigue and instructions to return for a follow-up visit in one month. 

     Fear and confusion were the most overwhelming emotions for me.  What exactly would RA do to me?  How will all these medications help me?  How will they affect me?  Will I become disabled?  Do I really have to get blood tests and see the rheumatologist every other month?  How will this diagnosis affect my life?  How am I going to handle this?  Are they sure I'm really this sick?  Most of all, I couldn't understand how I could wake up with an incurable illness.  Why did I suddenly get sick?  No warning, no indication that something was not right.  How is that possible?

     That December morning completely changed my life.  One day I was a generally healthy 20 year old, and the next I am a chronically ill RA patient.  I will be dependent on doctors and medication and endure pain and fatigue every day for the rest of my life.