I am going to be honest, I don’t like receiving pity when people find out that I am sick but I do want to be understood and heard. I need to be loved and supported. I have struggled with this and so many others have too. I believe that even if you don’t have a chronic illness everyone can agree that pity is not endearing. I guess the question is how do I gracefully allow others know when I am hurting but still receive the support and love that I need without receiving pity in return. Often times, I get asked how I am doing and even though I may feel bad I will say I am fine. I think people do ask this question in passing and it’s OK not to go into the gory details of how bad I feel. However one of things I do, is I try to listen to others because no matter how bad I feel if I can help someone else it helps my spirit and ultimately it gets my mind off of my own pain.
However, I have realized the people closest too me really want to know how I am doing and by saying that I am fine when asked is actually doing me a disservice. With anything, there is a fine line between letting others in on your illness and not wanting to receive a pity party. What I really want is to gain understanding and support without the pity. How can I possibly, receive love and support if everyone always thinks I am always fine? How can anyone be in my corner praying for me when they don’t know how I feel? I don’t know about anybody else, but I never want to receive pity. I need support, love, and understanding. I want the people in my life that I really care about to know about my illness and my limitations but at the same time I do not want to be felt sorry for. I have realized what I can do is educate the people in my life, because sometimes the only reason people don’t understand is because we don’t tell anyone. Others do not have to be in my body to give me love and support. Even though I am sick and there are times when I have to push through just to get out of bed, I still want to be seen as strong because I am. I still want to be dependable, because although I have limitations, I am dependable. My illness may have changed my circumstances but I refuse to allow it to change who I am. I don’t feel sorry for myself and that is the biggest mindset that has gotten me through so much. I have accepted the changes that have come into my life over the last three years. If the relationships that I have, truly love and care about me then I will not receive pity. I will receive love, acceptance and understanding no matter how I feel and those are the relationships that I want to have on my journey of life.
God is always near, even if we don’t see it in the moment. I can often look back after I am out of the moment and see God was close by all along. Being chronically ill, or just facing a trying time is probably the hardest time to remember that because you are literally fighting against fleshly pain and faith. For me, I get a reminder everyday that this “chronic” illness isn’t going away. My faith in God is constantly tested and believe me it’s not easy to stay strong. It’s in these times that I have to dig deep and my faith has to outweigh my pain.
This morning, I was listening and singing to one of my new favorite songs that I have recently found, “My God is Bigger”, written by Matt Fawcett. The chorus goes like this:
My God is bigger, than the stars in the sky
My God is bigger, than the question why
My God is bigger,than the saltiest sea
My God is big, enough to love me.
As I was singing this song I realized that if I truly believe that God is bigger than anything that I face, then what do I have to worry about? I have been facing some pretty extensive things with my health and now I am having to take chemo therapy for my Lupus. If that were not enough, I have some extensive things going on with my family. Some days I don’t know what to expect, and I don’t how things are going to work out. I asked myself this morning, how much more can I take? God told me, it’s not for you to take on anyway, cast your cares on me. So, no matter what I am facing today, or in the coming weeks he can take it on. He is bigger than any problem that I may face, bigger than anything I can imagine in my mind. Today, I am casting all my imaginations down, I’m not going to allow myself to dwell on the negative, the illness, the problems. Since God is bigger, I’m going to give it to God and let go of everything that keeps me from seeing Him move. I am going to choose not to be too anxious or worry about what I can’t change any way. I must trust that he is bigger than all my problems. I know that I am in good hands with my Father God.
In a normal day, my family can tell you that I am notorious for forgetting where I left my keys last. It’s almost a daily event. I tell myself to put them on the hook by the front door but it never fails. I run inside and put them down somewhere other than the right place. Being a mother of two, a fourteen-year old girl and a ten-year-old boy, also adds to the confusion. I hurry them along and it never fails, I have them out of the door, the dogs have settled in and accepted they are being left at home and I can’t find my keys.
I realize that many people have this problem as we age and as life just moves so fast. It would be easy to take that on as my excuse but I realize that the forgetfulness is a real problem.
As my Lupus progresses it doesn’t get any easier. For two weeks in a row I have forgotten early day for my son at school. The school calls and thankfully they are quite understanding but it is really embarrassing and hard to explain to my son why Mommy forgot to get him on time. This isn’t the first time that I have forgotten the day of the week.
I am having increasing trouble remembering simple things but I try not to be obvious about it to others because I don’t want anyone to feel sorry for me. So, I laugh it off but inside I am screaming at myself and feeling so stupid.
I must remember that this is not me, this is my disease and it’s not my fault. I can overcome this by writing out notes the night before and setting alarms to remind myself. I wonder though how many others are having the same problems with their memory and what are some of things that you guys do to overcome?