My Story

When I was 31, I was diagnosed with a rare disease that causes hearing loss, debilitating dizziness, a constant scratchy noise in my ear, nausea, and fatigue.  In my 40's I was also diagnosed with fibromyalgia, which has caused me chronic pain, chronic migraines, chronic bladder inflammation, and extreme fatigue.

That said, I have a part time career that I love, a marriage that  brings me peace and joy, a spiritual walk that gives me rest, a healthy self identity and peace with my Creator, 2 kids who (despite the normal stresses of parenting) add pleasure and a sense of meaning to life, family and friends who support and add joy, and a home that I truly love.  Despite my symptoms, I went back to graduate school, yes that meant that some classes had to be online.  I also studied for my counseling license, passed the test and completed the LPCC license.  I'm in no way saying that everyone with chronic illness should be working.  You have to find your own way to find meaning and contribution.

You might ask how did I get so lucky.  I do indeed believe I am privileged.  I am a white woman whose parents helped pay for some of my education.  My husband's family has also given us support.  I don't take my white privilege for granted.

However, I truly believe that we have the power to create a meaningful life and that we cannot blame our happiness or lack of happiness on our circumstances.  Yes, one must grieve the losses chronic health issues cause.  However, that does not make me powerless to create a meaningful and joyful life, nor does it justify getting stuck in the grief. I hope that what I have learned in this journey will help others who struggle with chronic illness.

So, my first tip is this: Remember the balance scales where the two sides have to equal in order for them to stay at the same position/stay balanced?

Creating the life you want when you  live with chronic illness is similar to this scale.  You must balance radical acceptance of what you cannot change with an internal taking responsibility for what you can.  I cannot go run a marathon, but I can take as much responsibility for my health as possible.  If I used to find joy in running (yeah that never really happened for me), I can learn to substitute a new activity that does bring me joy. This takes creativity.  We cannot get stuck in black and white thinking, but with practice and with regularly challenging our all or nothing thinking, we can create a life that brings us as much meaning and joy, if not more, than the life we had before chronic illness or the life we envision healthy people having.

The need is meaning, the strategy for obtaining meaning can change IF we are open to maintaining that balance between radical acceptance and owning responsibility for what we can control.

Now, I'm not in this example talking about eternal meaning.  I'm talking about the sense of purpose we all feel when we contribute to those around us or the sense of joy we feel when we observe nature or hold a newborn child. I'm also not saying that everyone with a disability should work.  Sometimes, we contribute to others by having a good attitude when we don't feel good.  Others see that and are encouraged.  What I am saying is that in order to create a meaningful life when you live with a disability, you must first balance those two thought processes of radical acceptance and owning responsibility for what we can control (internal locus of control).

Radical acceptance vs owning responsibility for creating a meaningful life.  How are you doing with this? What brings your life meaning that you do have control over?  If nothing currently does, what are some things you can add to your life that would bring meaning?  Are you acknowledging your grief and loss and moving towards radical acceptance of what you cannot change?  If you spend your emotional energy being upset by what you CANNOT change, you will not have the energy to spend it on what you can.  Again, this does not mean stuffing your grief.  By all means, have those days where you are sad and angry about your illness; just don't stay in that place. Grieve AND focus your energy on what you can control that brings you joy and meaning.





See more information on my youtube channel:  https://www.youtube.com/watch?v=URlG8F6mHB4&t=1s