“At Least It’s Not Cancer”

“At least it’s not cancer.”  Have you heard this before?

In the fourteen years since my diagnosis, I have heard this statement countless times from well-intentioned people who are trying to say something helpful.  For the record, I do understand how hard it can be to find the right thing to say to someone who is in a challenging place in her life.  There are so many times I’ve been talking with friends or acquaintances who are mourning the loss of a loved one, going through a divorce, have lost a job, or who are battling health problems of their own, and I’ve struggled to come up with the “right” thing to say.  Knowing that, I often choose not to disclose my Rheumatoid Arthritis, or to use a very casual manner in mentioning my RA, as I have witnessed the immediate discomfort some people have with that information.  As a society, we don’t generally associate youth with chronic illness, so learning that a young person has a disease can create a conversational stumbling block.

However, there are times when I feel it is important to share that I have RA, such as on occasions when I am unable to meet work or social obligations due to a flare.  I want people to know that my absence is not due to something that I can avoid or reschedule, and that I would participate in the event or activity if I could.  Flares happen, often unexpectedly, and most of the time I am honest with others when it is my RA that is keeping me at home or on the sidelines.  Some people are surprised to learn of my diagnosis, and feel they need to say something in acknowledgement.  Or sometimes loved ones who already know about my RA are trying to be supportive when they hear I’m experiencing a flare.  It is in moments such as these when I hear the statement I now dread, “At least it’s not cancer.”

I am sure that every single person who has uttered those five words has done so out of an honest desire to say something kind.  That being said, this is one of the least helpful things to hear when I’m having a hard time. This juxtaposition of my experience with a worst-case scenario is no doubt supposed to invoke a sense of perspective and gratitude for life.  However, when I hear it, I only feel worse about myself.  In my mind, those words carry the suggestion that I should be handling my circumstances with more grace than I am able to muster; that in battling something that is not life threatening, I am struggling more than I should.

The thing is I am grateful that I don’t have a terminal illness.  Ironically, my RA often fosters my gratitude for my health, as there is nothing like the experience of a flare to make me appreciate my good days.  However, when I am in the throes of a flare, I don’t feel grateful.  I don’t want to be a young person with a chronic, degenerative condition that is unpredictable in nature.  No sane person would want that.  When I am in a flare and someone compares my experience with cancer, it feels like a critique of my very natural wish to not be in pain.  It invalidates my experience by suggesting that because things aren’t the worst they could be, that I shouldn’t be struggling with what is before me.  Unfortunately, when I am experiencing a flare, I find that my physical pain also leaves me more emotionally vulnerable, which makes it all the harder to feel criticized.

Luckily, there are many people in my life who are able to express their concern in ways that I do find comforting.  Some helpful statements include, “I hate that you are going through this,” “I wish I could make the pain go away,” or simply, “Is there anything I can do to help?”  While it is true that even in a flare things are better than they could be, statements like these show concern while validating my struggle when I am feeling at my worst.

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