Being chronically ill can turn one’s focus to nobody has it as bad as I do. Reality check: other people’s problems are just as big as mine. I have noticed lately the lack of acceptance that normal healthy people have problems too from the chronically ill community. Pain and suffering is not just isolated to the chronically ill. The world falls to pieces in different ways for different people, my wrecking ball just happens to be named “Lupus.” Someone else’s could be “divorce” or “bankruptcy.” Another thing I have to remember is sometimes it is just as hard, if not harder for the caregivers of a chronically ill person than it is for the chronically ill person him or herself. It is one thing to suffer but it is another to watch someone suffer helplessly, knowing as much is being done as possible to help the person. I have been on both sides of the fence, I know what it is like to help care for a chronically ill person and I am a chronically ill person.
A caregiver/taker has one of the hardest jobs in the world. Imagine having day after day be strong for someone who is weak, someone who will probably never become strong again. For a fair number of people this is actually a daily reality. It is draining, people criticize, ask questions, generally there is little thanks that comes out of the care a person gives and in the end, more often than not death is the result a care taker has to live with. Caretakers are the ones who are always on call, they can never let down their guard and the sick person’s illness can have just as much impact on them as it does on the sick person.
I will use my mother as an example, for she is my main caretaker. She runs me to all my appointments, picks up my prescriptions and makes sure I am alive every single day. This in it’s self is a full time job. I alone have two doctor’s appointments this month, three different prescriptions that have had to be filled and a couple bad days that have brought me to my knees. Not to mention the unexpected calls of “We want Katyann in right now” from the doctor’s office. It’s taxing on me and even more taxing on her because she is the “middle man” one might say. She gets it from both sides and is stuck just sitting in the middle. Every single day is different for me, both my Mom and I have to adjust to what the day brings. A shopping trip for shoes may be delayed for weeks because I do not feel well enough to go to the mall.
Sometimes caretakers- especially those who are parent caretakers with young adults who are chronically ill/disabled are criticized for being too protective or over-bearing. I fight every single day for my independence and against Lupus. On bad days when I am so tripped up on narcotics I cannot walk, I have on several occasions slowly crawled to the kitchen for a glass of water. I am just so determined to not let Lupus run my life. But there are limits, places where I just cannot pick up the pieces without causing myself a great amount of grief. This is where my caretaker steps in and helps me. Pride set aside, sometimes it is just how life is. People have opinions about what an eighteen year old should be able to do on their own by now and judge me simply because I cannot do such things unassisted yet. It hurts so badly. The politics, the looks, the sneers, I’ve had it all and my caretaker has too.
That’s my two cents… and a couple spoons as well. Hope everyone has a bright and cheery flare free Christmas. The UW is really trying to get my Lupus under control right now. So far, no dice but eventually something will work. Shalom!