Anonymous Story

Reflections of Life


Today, I was pondering different events and people in my life.  I was thinking of the different interactions I have had with those people through the years. 

My life was quite a bit different before I got sick. I thought I had lots of friends.  As I got sicker, I watched friendships fall by the wayside as I was too sick to maintain those relationships.  I quickly realized I was the only one really maintaining the relationship all those years anyway.

I would have people greet me and ask how I was doing, but they didn’t really want to hear how I was doing.  They didn’t want to hear about my ache and pain or symptom of the day.  They expected me to say I’m good, how are you, and then go on our merry way.  Another example was when asked how are you and you reply, “Well I’m here.”  They say, “Well thank the Lord. That’s something to be thankful for.” It’s not that I am not thankful, but my pain is real and you don’t want to hear about it or let me acknowledge it. How am I supposed to feel? What am I supposed to say? Nothing is ever right!

I am not a complainer by nature.  I like being happy and upbeat and I try to see the good in everything.  Sometimes you just need to be real.  I can pretend I am fine if that makes people more comfortable, but then I am not being true to myself. And… It’s a lie! Why should I have to downplay what I am going through just to make someone comfortable?  Why do people expect me to tell the truth, but also expect me to tell them I’m fine?

Listen, if you want to be a friend to someone who is sick, let them be real.  Don’t chastise them and tell them they should be thankful for xyz. Say you are thinking of them or praying for them.  Ask what you can do to help them? Sick people don’t want or need your sympathy.  What they want and need is compassion.  They don’t need someone to fix their problems.  Just listen and care.  Genuinely!  Don’t judge and second guess them. Don’t say well if you can go to the store, why can’t you come to my party? Sick people have limited energy.  I HAVE to have food to eat.  What you don’t see are the days I scrape by and don’t have the energy for the store.  You don’t see the days I cancel doctor appointments because I just don’t have the energy.  You also don’t see what I went through to get to wherever I am going.  You don’t see me gagging trying to get ready, or laying on the bed in a towel, trying to get energy to get dressed. You aren’t there when I almost pass out in a store or when I do pass out at home.  If you see me at all, it is because I had a good enough day to make it there and most likely not because you came to see me. Remember, I am the sick one and I am STILL the one expected to put forth the effort!

Sickness has changed me.  I never intended for it to, but it undeniably has.  I can’t stand fair weather friends. Those old friendships… I think those people think nothing changed, but a lot changed for me.  A LOT! Not only did the sickness engulf and consume the former me and my entire life, but it took my friends with it.  When I needed help, it was nowhere to be found. I didn’t get invited to anything anymore. Very few phone calls or cards to ask how I was doing and say I am thinking of you or praying for you, and nobody came to just visit and spend some time with me. Now that I am moving far away, I hear how much I will be missed.  I’m sorry, but I really have a hard time believing that. 

I may sound bitter.  I don’t think I am.  I try not to be. This is what I deal with on a daily basis as I’m sure most chronically ill people do. Every time I have a surgery for anything, people say they hope that will be the one to make me better.  I don’t know whether to laugh or be mad. Am I not ok the way I am? This is really hard for me.  I don’t like dealing with this illness but there is no cure and this is my new normal.  Why can’t people accept that? To me, when someone say I want you to get better it translates to I want you to be better so you can do xyz.  It has nothing to do with me and everything to do with what they want me to be or be able to do.