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What Wikipedia Does Not Tell You About Chronic Illness

Wikipedia gives a great scientific definition for chronic illness.  It even lists some common chronic illnesses for reference points.  However, it is missing some facts that sufferers of chronic illness have in common.

A person with chronic illness will:

Experience grief

If your chronic illness has changed the way you live your daily life, caused you to lose a career or drastically change your life,  you will grieve over these losses.  There are five stages of grief,  and you will experience them all: denial, anger, bargaining, depression and acceptance. In fact, you will repeat stages as you move through them. I especially repeated anger during my grieving process.

Give yourself patience until you reach the acceptance stage. There is no timeline. I lost my career and my whole life turned upside down in 2008. This is a journal entry from 3 years later.

September 3, 2011

Such a strange word for me to describe a future.  Seriously, NO ONE has died and yet I am dramatic enough to use the word “GRIEF” as a descriptor!  What am I Grieving?

  • LOSS of a career

  • Inability to provide for my family

  • Incapable to volunteer ministry time

  • A lonely, unconnected life

  • Loss of ability to physically live life I emotionally and spiritually conceive as my passion and purpose

 I am so lost right now. Really, really lost!

Wrestle with identity issues

Journal Entry - October 2, 2012

I used to have a career as a Sr. Database Analyst. I used to be an elder in a church. I used to be the life of the party and enjoy hanging out with friends. I used to volunteer time with charities. I used to be constantly on the go, enjoying a very busy, yet fulfilling life

Now I am no longer those things. I am no longer her.  I haven’t been her for a long time. That is NOT my identity now.  I hear from people or feel the expectation of others they want that person back. Well that person is gone. Truth is, I miss her too.

But she was just a construct.  I am me and I am right here. A new way of living will be built, but it will be a temporary construct as well.  That is how life should always be.

Even the dictionary definition of identity is confusing!  It is not a mystery that an understanding of identity will morph and confuse you.  If you allow yourself to become stuck in an old identity, it causes great pain and blinds you to your future. It also creates a sense of hopelessness. This is why it is so important for your identity to be defined more from your soul than your body and your capabilities.  I root my identity within my faith. This means regardless of what happens to my body, my identity remains the same.

Likely have insomnia

According to a survey done by Psychology Today, (citing Article September 26, 2013) 30% of respondents said they never got a good night's sleep and 53% said they had a sleep problem.  

I have networked with many others who suffer from chronic illness and their sleep patterns coincide with the above referenced survey.  Many people describe having their days and nights switched. Meaning they stay up all hours of the night and sleep, as best they can, during the day.  I am one of those people.  I call it vampire hours.  My husband's caregiver support group also state their loved ones have this issue.

Not like to asking for help

It is an act of self care to ask for help.  You need help. That is a reality. For some unknown reason, our society makes you feel that asking for help is an example of weakness. There are some ordinary negative thoughts in regards to asking for help that likely hinder you.

  1. I should not need help.

  2. I did not used to need help with this.

  3. I will be a burden if I ask for help.

  4. People will tire of me asking for help.

  5. I will lose my independence if I ask for help.  

These are all insidious thoughts not based in reality. You will find that your caregivers are there for you and it is OK to ask for their help. Love yourself enough to ask.

Become frustrated

Frustration is a constant companion.  This is a fact of your illness.  You are going to be fed-up sometimes. You are going to be sick of being sick.  You are going to have bad days.  There will be days that your frustration is at maximum, and you are just angry and/or sad. Frustration will become a regular part of your life, and this is normal.  After all, you have something to be frustrated over. You have something to feel sad about.

Have limited capability

A chronic illness, by definition, will limit your capacity to live life as you once did. I am profoundly struck with how much the simple routines of everyday impact me.

There are only so many units of energy that you have to function during your day. Things that most people don't think of take away units of energy from you. For example, getting a shower and getting dressed for the day use up units of energy. When those units are gone you are done for the day.

However, you are a whole person in spite of your illness.  You are not inadequate, but you are incapable of doing many of the things you used to do.  It is important to make this distinction between inadequacy and incapability. Feelings of inadequacy are ambivalent and lead to shame and remorse.  Acceptance of incapability are just the facts of life. For example, you cannot always attend appointments because you are unsure of what will be a good day for you.  This means that the people in your life, from friends to doctors, need this understanding. You are not inadequate or unreliable in being dependable for scheduled appointments.  You are incapable of the certainty of attendance to a scheduled appointment or event.

Wikipedia is a great source for clinical definitions but it certainly will not tell you about the above commonalities people with chronic illness deal with on a consistent basis.  Unfortunately, this is only a partial list. Hang in their friend!  Chronic illness does not need to define you. It simply affects the way you live your life.  It doesn't take value away from your life.  

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