Part Two of a two part post from Melissa Sisco. You may access the first part here. Melissa poignantly describes what it is like living with this invisible illness. She has taught me a great deal in her transparency in discussing these important issues. Welcome back, Melissa!
It’s Not That Easy
If I receive one more comment from someone indicating that I should “just go on disability” already I think I will scream. I know some of the people say it with genuinely good intentions, and some say it as a way to snipe at someone or anyone. Yes, I feel bad more often than I feel good. Yes, working 8 hour days, 40 hour weeks, drains me of every last vestige of energy I have. Life is hard. That concept is not news to anyone and I am far from alone in making that statement. Part of me is not ready to throw in the towel yet. I am only 33 years old for goodness’ sake! I don’t want be a welfare/disabled parasite to this community, to my family, to the economy, or to myself.
Not to mention the fact that the people who say I should quit just happen to be relatively healthy and have absolutely no idea how difficult it is to obtain disability benefits, even if a person has an obviously debilitating disease (which I don’t – mine is invisible). It can take from as little as six months to five years or longer. That estimate is the result of the research I have completed upon looking at my options. Not pretty, and add the fact that the entire time I will receive no pay. If I even have the option of continuing benefits I will have to pay out of pocket. I carry the insurance for my family. Supposedly if I have a “life changing event” I can transfer the insurance under my husband’s name. Our premiums will go up because he is in a higher salary bracket; the children will be covered because they are already dependents – Thank God for that. But, there is no guarantee that I will not be subject to a 12 month waiting period; which would exclude anything I would/could be treated for during that time. There is also no guarantee that all of the illnesses I am diagnosed with and treated for right now won’t be excluded because they are “preexisting conditions.” That’s just bone chilling to think about.
We aren’t flat broke, but we aren’t exactly comfortable either. Luckily we’ve really worked hard to pay down our credit card debts, so at the very least we should qualify for loans if necessary. But I don’t think I could live with the knowledge that I was the one who caused my family’s financial ruin. It wouldn’t take much to put us there now. I don’t want to lose everything that we have worked so hard for. I don’t want to steal my children’s futures before they’ve barely even started. We struggle some months just to pay medical bills when we have insurance, I can’t imagine what the costs would be without. People like me can’t live without current medical technology. I have accepted that fact, and chosen to be grateful that God put me on this Earth when he did. Perhaps I was careless in having children; perhaps I never should have married. But my life right now is so wonderful, despite the illness and my worries. I cannot imagine not having the awesome privilege of knowing my beautiful daughters, or loving my husband for the last 14 years (married for 10!). I would not give up those blessings for anything. But my heart aches to think that I could be the one to drag my family down. We do try to not “live above our means” but at the same time, you can’t take the money with you, however little it may be. That’s why we choose to take family trips, “vacation,” camp –whatever- when we do have the chance. At least enjoy what we have now while it is here.
But I am scared. I don’t think my husband really truly understands what my body is going through. Truth be told I wouldn’t wish this on anyone, so I’m kind of glad he can’t understand. But at the same time I want him to see that I am not a quitter, I am not giving in, I am not broken, and I am still me. My body just doesn’t quite work the way it used to. Too often I get home from work and it’s everything I can do to help with dinner, clean up some around the house and yard, and not fall into bed before seven o’clock. It angers me to no end when I can’t do anything but lie there, hoping to feel better. The guilt gnaws at me near constantly. My husband has to not only also work his tail off at work, but come home and cook dinner, clean the house, do the laundry, mow the grass, help the girls with their homework and put them to bed. Pretty much everything. And I just lie there waiting for my head to explode or the floor to fall out from under me. Sometimes both. It just seems so unfair. I know we both vowed to work together through sickness and health, better and worse; it just never occurred to us that sickness and worse could possibly come so soon in a marriage of two young people.
I fully understand that by choosing to continue working full time might very well speed up the pace of my illness. I may pay some awful consequences for myself and my family down the road because of my own pride and fear. I can’t see the future, but I am not going to apologize for living, even if it isn’t easy.
If you would like to write for Hearing Elmo, please contact me at firstname.lastname@example.org The only “requirement” is that you or someone you know has an invisible illness, disability or chronic condition. We learn so well from each other – those of us who live this challenging yet rewarding life!
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