The Guilt of Rheumatoid Arthritis Remission - Sharing with Those Still in Pain

  • Life is unpredictable.  Living with an unpredictable, chronic, and degenerative disease such as RA or MS can be quite emotional.  The emotional roller coaster can be smooth at times or sometimes quite jerky and dangerous.  Lene’s recent post, Acceptance and RA: All Tangled Up in the What Ifs, illustrates that point well.


    When life with RA keeps us from being able to do things, we might feel guilty.  Maybe we wish that we weren’t disappointing others, or even more likely, we sincerely hope not to disappoint ourselves.  A powerful feeling involved in this disappointment is GUILT.


    Guilt can be insidious.  It serves to keep us down and tends to worsen our impression of its root cause (no matter what that cause, external or internal).  I’ll boldly say that most of the time we make ourselves feel guilty even when our loved ones are supportive and wish the best for us.  We feel guilty for not being able to do all the things we once were.  If we’re not careful that guilt can fester into a boiling self-hatred.

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    Whoa, hold up!!  Stop right there.


    What if the guilt is not coming from the several things you can’t do, but from the things you CAN do?


    Sounds silly, doesn’t it?  Feeling guilty for being ABLE to do things.


    I have a confession.  I have been feeling slightly guilty lately because my RA is not the horrendous beast that it once was.  It’s a blessing that my RA has become controlled through treatment.  If looked at with fresh eyes from an outsider, my RA would look to be mild now.  Drug-induced remission is deceptive that way.  But if I miss even one dose of methotrexate, the RA reminds me that it is there now and forever. 


    My RA is not completely invisible mind you, without any symptoms, but it does not remain the single most distracting thing in my life.  In other words, I’m doing rather well.  Fortunately my MS seems to be stable right now also.


    But why would I feel guilty?


    I feel guilty because so many people in our community are not doing as well.  I hesitate to talk about it (ie. feeling good) too much for fear of making others feel bad.  My unofficial observation is that folks living with chronic illness tend to not visit online disease communities when their disease is doing well.  This makes sense and would not be a surprise to any of us.  It is just not common to need this connection when things are going well.


    But MyRACentral is a unique community which loves to see how others are doing well.  Lene often talks about that wonderful moment that takes your breath away when the pain from RA subsides.  That coming into the light to smile upon how very good life can be.  We love following Sara’s adventures as she travels the globe and doesn’t let RA dictate what she does.  V reported on a positive interaction she had with her nurse practitioner last week.


    In the simple act of writing this, I realize that I too need to talk about all the good things going on in my life, RA-related or not.  No guilt involved.  So here goes.


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    Two weeks ago I accompanied a dozen students at the annual Solo and Ensemble Festival in Northern Virginia.  My hands and fingers stood up to the test of endurance, strength, and facility.  Sure I was very tired afterwards and my hands felt inflamed (temporarily), but it was wonderful!!  I will repeat the situation at the next round of Festivals in just two weeks.


    My hands and wrists are not swollen as they once have been.  I haven’t worn in wrist braces in quite some time.  My current treatment approach (Rituxan and Methotrexate) is working for me.  Yahoo!!  Although the infusion experience can be quite unpleasant, it is totally worth it.  Strange....I love having my B-cells depleted.  ;)


    There is HOPE that things CAN GET BETTER.  Please don’t feel guilty and be silent when things are going well with you.  We all need to know that RA doesn’t always win.


    Please share an update on how you are doing today, this week, month, or year.  Share the good and the bad.  I look forward to reading about your victories no matter how small they may seem.  And, thank you for allowing me to get rid of the guilt of remission.


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: April 11, 2011