Words failed me.
Years later, I have a better response. It struck me that this is what people don’t understand about chronic illness or disability. In their lives, if you get a horrible virus your friends jump in. They help ferry your kids around, help with your laundry, or maybe they’ll bring you dinner. You might have to stay home from work a day or two, but pretty soon you’re back on your feet. If you have a wide social circle your needs will be met until you feel better. Then your life gets back to normal.
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When you have chronic illness your life never gets back to normal, and most people don’t have the patience or the time for that. At first, your friends and family are as helpful as they can be while they are waiting for you to get better. When that doesn’t happen people react in different ways:
1) Blame the sick person- This is the “if you would just try harder “or the “if you would just have a better attitude” phenomenon. People like to think that you can work your way out of an illness because it helps them to feel more secure. That way they know it won’t ever happen to them and they can pretend they have total control over their own life.
2) Denial- This is the “there is nothing wrong with you a good (insert expensive treatment here) wouldn’t cure” or the “you are just faking this for attention” belief. These people are happier living in a world where they can deny that bad things happen to good people, so they look for excuses to explain the situation. It’s all based on fear.
People who think you're faking your chronic illness for attention are afraid. They don't want to live in a world where bad things happen to good people, so they look for excuses. Share on X3) Avoidance- This involves wonderful people who are sympathetic and want to help but are scared by the situation. They disappear because they don’t know how to handle things the right way. This is an understandable reaction because so many of us don’t know what to say to someone who is suffering. It feels like words are not enough, and as a result many people just don’t say anything. I myself am totally guilty of this one.
4) Abandonment- This involves people who use their fear as an excuse to end their relationship with you. They excuse their abandonment by comforting themselves that you are depressing to be around and are a negative person. After all nobody wants to be around someone who talks about themselves and their problems all the time. They tell themselves it’s best to sever such a toxic relationship.
5) Love and acceptance- These are the magnificent people who feel for your situation and who are there for you every step of the way. They are rare but they do exist and are a reminder that there are truly good people in this world.
I have experienced relationships with people in every one of these categories. I have figured out who my real friends are in all this and am also lucky enough to have a supportive family. And yet, there are times when I’m left alone. Healthy people want healthy friends. They want friends they can regularly rely on. They want friends whose lives are not regulated by pain, medication, exhaustion, sleep patterns, and doctor’s appointments. I understand that.
Very few people can see past these barriers to practice love and acceptance. This means I love and appreciate everyone in my life that has managed to do this, I don’t know what I’d do without them.
