By Paulina Brooks
Like most of us living with a chronic illness, I discovered all too soon following my diagnosis of mixed connective tissue disease that one of the biggest sources of suffering was the loss of friendships. It took years to understand that those around me didn’t have to deal with a life-threatening disease - but I did. As such, it was their prerogative to feel uncomfortable around me, to fear their own mortality and to feel neglected in their own way when I was no longer able to keep up with social commitments.
So, when I recently met a young woman with CIDP (chronic inflammatory demyelinating polyneuropathy, one of the many conditions I live with), it was not surprising that I was ecstatic. She not only understood what I was going through, but she lived with it every day. Sadly, however, I quickly realized that having a rare illness in common is not the magic glue that makes new friendships stick. An hour into our conversation, and as we both watched our respective bags of intravenous immune globulin (IVIG) slowly drip into our veins, she had shown a very needy and unpleasant personality that left everyone around her rolling their eyes. Every word was as negative as her disposition. She had chosen to become her illness, and admittedly, she wanted to give up. Bearing witness to such behavior left me overwhelmed, wondering if any amount of reassurance would ever be enough to calm her down and show her I cared. Still, I tried to find out who she was as a person to no avail.
We all have a basic need to connect, but this was an unhealthy version of craving contact fueled by helplessness and fear. Living with a debilitating illness can be isolating, leaving us eager to talk to someone who can truly understand us; however, being sick doesn’t mean we can indulge in exaggerated and persistent complaints just to convey how lonely we feel. That attitude is sure to backfire, and we must be careful not to alienate the precious people who stood by us, including our medical team.
In this case, our disease is indeed the same, yet our responses to treatment are as different as our respective attitudes. To what extent should we compromise our own emotional wellbeing in order to help someone who might not want or be ready to be helped? Perhaps her personality before the illness wasn’t much different. I don’t know; but what I do know is that a life-altering event doesn't change our character - rather, it reveals it.
How do you protect yourself against the “Debbie Downers” and “Chatty Kathys” of the world? How would you have handled this situation? As for me, the next time I encounter an overly inquisitive fellow patient, I’ll be sure to set boundaries and protect my right to privacy, even if the latter is an almost impossible task in a setting where patients sit less than two feet apart. But that, along with infusion room etiquette, are topics for another blog.