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.
Melissa Sisco
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If you would like to write for Hearing Elmo, please contact me at denise.portis@gmail.com 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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Denise Portis
© 2013 Personal Hearing Loss Journal
Hearing Elmo 
Dear Melissa, I too suffer from invisable illnesses from an early age, but I am a bit offended that you find to refer to people who have chosen to apply for Disability or are on Disability and are on welfare as Parasites? I really do not appreciate a reference like that because I have had to live on disability. I have bought a house while on SSDI by land contract, I pay my bills, I do not go out and piddle my money what little SSDI gives you to live on. I feel for you and your decision. But if you really need to get on Social Security, I hope you realize its not the end of the world. You pick yourself up, dust yourself off and live life the best you can. You really do not have control over it when it has to do with your health.
But please do not refer to us who are already on disability as parasites. I do what I can to give back to the community, maybe not so much financially. But in whatever way I can. It’s very bothersome to see someone who wants understanding for their illness to pass judgement on the very problem they are wanting understanding with. Something to think about…you should walk a mile in my shoes
Cally, I didn’t intend to offend anyone by that comment. I don’t see people who have already gone through this process as parasites, but I feel that because some diseases are invisible illnesses, others jump to that judgement. That is how I personally feel that other people will judge and view me if/when I have to go down that road. It bothers me as well, but I felt it was important to put it in this piece. This disease is too complex and too devastating to be sugarcoated in any way.
I really Enjoyed this one Melissa for sharing it with us I will read part 2 next time I am at the computer. Looking forward to it.
I have to agree — SSDI is something I worked for, and went I went completely deaf I was glad to have it. I mean, I worked and paid into that disability insurance, and it doesn’t make me a parasite to use it if I need it. I’m sorry you feel that way, because it sounds like working is really taking a toll on you.
This post is “Part Two” and is closely linked to the Part One post (see link at beginning of this article). I think if you read them both together (or have read Melissa’s posts before) you would – for the benefit of the doubt – believe this author’s intent was that society often views people on SSDI this way. (I know her better through email connections and believe this was not her intent). It is our job to change that stigma, and I know we do with our lives, choices, and involvement. (After all, it isn’t like those on SSDI have dropped out of life, right?) As a writer, I can say I have often mis-communicated my intent with a poor choice of words. (If you only knew 😉
SSDI would be a terrific topic here on Hearing Elmo! I welcome guest authors and believe it would benefit our community to perhaps publish “our voice” on this. Any takers? (I have close friends on SSDI and work with my county’s commissioner on a special task force even… but right now I am still able to work just because of the nature of my job. I wouldn’t be a good choice for an author as it is not my journey (yet). Email me at denise.portis@gmail.com if interested!
Your narrative is wonderful Melissa! Like you and many many others, I have experienced the isolation and perpetual grief process that accompanies progressive invisible challenges. If everyone in the world were to become transparent, except for their struggles, we would see that feeling alone while dealing multiple hidden situations is more the norm than the abnormal. It is humbling. There are many people like you, who were having very similar experiences. Thank you for sharing Melissa, so that others will not feel so alone.
Knowing Melissa’s heart, she did not mean that everyone who is on disability is a parasite. Her own uncle is on disability after having 3 strokes. She saw the toll it took on her aunt and uncle as they waited 4 years to get a disability ruling (and no children to support). How can an administrative law judge who determines if you are disabled or not, sit there and tell a man, who can only walk with a quad cane, that he can still work in a hosptial and run to code blues as he did in the past (who would want to be the patient in that code blue)? That is the reality for a visible disability. What is it for an invisible disability?