OK

This week, and for a few weeks, we will have a lot of time to discuss the realities of ACA.   How it works, how it doesn't work, things that can be changed to improve it and what work still needs to be done.

About two weeks ago, I posted a diary about our cost of medication prior to ACA for our son; I was contacted by someone who read it as well as a much older diary I had written, and had asked me to write something up for her, on what healthcare really is like prior to ACA.   Because she doesn't want her real identity known, I've changed just the name and a location, but the rest is 100% truthful and based on a set of interviews we did over the course of the week.

I'm writing this much more as a narrative, but I think this story really helps explain why the health care system in America had to change.  It also reminds us how bad it was - and why we should never go back.

Please note: the person in this story is NOT me, but just a friend through here, therefore, it is written in HER voice.   Thanks ;)

Jennifer's Story

When you are young you want to believe you are indestructible.  Minor ailments to real illness don't shake you because that voice inside your head keeps telling you that it will pass and everything will be OK.  I was 21 years old, attending a good university working on my Pre-Med degree.   As much as I wanted to believe that I was indestructible I also knew something wasn't right.

I started having migraines, intractable vomiting, nausea, nerve pain, muscle pain, joint pain, dizziness, weakness, and fatigue.  I knew that something was wrong, but I felt I could power through it.   I was 12 credit hours away from completing my Pre-Med degree, and I could see the light at the end of the tunnel.  My body, though, didn't care about how close I was to a diploma and every day that went by I felt worse.

I began missing classes, and I was forced to take myself out of classes, knowing my health wouldn't let me attend enough to pass.  But you can't take incomplete on all your classes, and classes I couldn't attend went from Incomplete to Fail, because I wasn't there.

At about this same time period, I began visiting doctors to figure out what was wrong.  I was first diagnosed with Lupus, and about 6 months later my disease progressed to start threatening my organs.  The failed classes I was unable to attend cost me my scholarship at my university and I felt as though I had little time left but to fight for my life.  

Once my organs were threatened and the illness progressed, my diagnosis was changed to a slightly different disease called Mixed Connective Tissue Disease (MCTD).  

At this point, despite illness I was compelled to find any kind of full-time employment.  My parents could not cover me on their health insurance. I had maxed out the policy at the student center and I needed more specialized care as the autoimmune disease did Sherman's march through my vital organs, tearing down lungs at one point, heart valves at another, and kidneys at yet another.   I was sick.  I was broke.  I worried daily that I was a burden to those I loved most in my life.

I had been dating my hubby for almost 5 years when we got married. I worked full-time for the benefits, but I was always in trouble because I took off more time than I had coming to me. Eventually, John had to give up his pursuit of building a professional photography studio because with me being in and out of the hospital, injecting chemo drugs into my legs, etc., I just could not be the one responsible for carrying my own health insurance... it was important for him to find work that would cover me.

So here we are: I have not finished my degree even though I will never forgive myself if I don't. I deal with the ins and outs of insurance several times a week, trying to convince them that they would be better off paying for expensive medicines than hospital stays, and trying my best to live my life.  I've had 14 surgeries since my diagnosis and it is likely I may face more.

So what does something like the ACA mean to a person like me?  How would my life have changed if I could have been on my father's policy until I was 26 or if I could have qualified for health insurance? Could my husband have had a happier career than the 'pays-the-bills' job that wears him down?   I think of the dark knights we pondered what would our insurance pay for?  What would we do if his job went away?   And how can we treat my illness and stay below the limits that would leave us in financial ruin?

What if my husband's next job would offer no insurance?  What if I couldn't get the treatment I needed under the policy or the limits were low?

My husband pays in and gets barely anything out of it, but I really need it. ACA would have made such a difference in my life. And I hope it will make a difference in the lives of the generations to come. Because no one should be so close to a degree and have to quit. No one should have to give up an entrepreneurial dream before it's given a chance just because they love someone who's sick.

I disclosed all of this to you because you were brave enough to write the blog about how ACA will help you and your family.  It is too easy for people to say bad things or think bad things of those who will benefit.  I don't feel like I can come out and say it publicly because I do want to go back to work eventually and my name is too unusual for me to get away with it. If I were to chose a pseudonym under which to disclose my story, I wouldn't have an audience. I wanted to let you know this, in case you are tired of hearing people say - well, yeah, maybe it'll work out for you and your kid, but what about the rest of us? I am part of the rest of us and I think there are a whole lot more stories out there of lives that could be better after ACA.

I wish sometimes I had known sooner, earlier.  And better preventative care may have helped.  If more healthy people get insurance and take care of their health they might have a better experience.  

Before ACA, we were all on "Emergency Room" care.  We were sure to go if our life was on the line, but we worried about if we could go just to get good advice or help.   This is just a first step, but it is a good one.  

When people say: who benefits, I have no problem saying people like me benefit.   And, I'm sorry, I don't feel guilty about it at all.  My only other option is to give up the fight and embrace a disability that would kill me without great treatment.   And in a struggle for my life, for my friends, my family and my husband I love I can't be ashamed about wanting to survive.  I consider it very pro-life of myself to feel that way.

KosAbility logoKosAbility is a community diary series posted at 5 pm ET/2 pm PT every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. Our use of "disability" includes temporary as well as permanent conditions, and small, gnawing problems as well as big, life-threatening ones. Our use of "love someone" extends to beloved members of other species.

Our discussion threads are open threads in the context of this community. Please feel free to comment on the diary topic and ask questions of the diarist, and also to ask general questions about disabilities, share something you've learned, tell bad jokes, post photos, or rage about the unfairness of your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you are interested in contributing a diary, contact series coordinator postmodernista.

Originally posted to KosAbility on Sun Oct 20, 2013 at 04:00 PM PDT.

Also republished by Community Spotlight.

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