Why My Anger Has Returned Since My Early Medical Retirement

It’s been three months since I’ve been officially retired and I’m slowly beginning to process a lot of feelings that I’ve been too busy to deal with before. You see, when I was teaching, and being a parent and wife and “professional patient,” I spent so much time tamping down my emotions, or not dealing with things, preferring to defer until a later time because I was too busy just treading water. Now that I’ve chosen to focus on my health, I have no choice but to deal with the things I haven’t allowed myself to and the one emotion that keeps coming in waves is anger.

I thought I had dealt with the anger component of this illness years ago as a part of when I was diagnosed with lupus and fibromyalgia. It’s one of the first steps in grieving for your former life. I try to stay away from blanket statements, especially when it comes to dealing with chronic illness, so I will suggest that the majority of people diagnosed with chronic illnesses will go through some sort of grieving process for the life they led when they were healthy – the things they could do, their health identity.

The process by which one reaches acceptance of your new state as “chronically ill” (or “chronically fabulous” as some of my friends and I have dubbed ourselves) can take years and wax and wane. Some days it’s easier to accept than others. I straddled the ill and healthy worlds for years, working full-time then crashing when I got home. Looking “fine” to most outside while keeping an independent pharmacy in business. (Not a joke! They bring me cookies at the holidays!) Now that I’ve crossed over and taken my place in the disabled world, I’m finding that there are some realities that take some getting used to. One is that I did not expect the anger to return.

Why am I angry? What am I angry about? It’s not that I’m sick or that I had to leave teaching. I’ve made my peace with the lupus and I’m quite excited about the new opportunities this chapter offers.

So what exactly is keeping me up at night, staring at the ceiling, heart racing, making me go over situations in my head?

If I had to put my finger on it, it’s how we, as a society, see and label the disabled. For years I’ve heard horror stories from my friends about the hoops they have to jump through to be approved for disability. The years they have to wait, all of the documentation they have to provide, all the while living hand to mouth, terrified about how they will survive and keep a roof over their head.

Then you hear the stories about the abuses in the system and how “so-and-so went on disability and scammed the system” and as your “friend” yammers on about how “easy” it is for anyone to get approved and all of the people who do it and “they should just cut everyone off” you die a little inside. If it’s “so easy” for some people, why do I, someone with several incurable diseases who really needs to be approved, have to provide all of this information, pay a small fortune in document fees and consult a lawyer?

I used to work with someone (not a friend by any means – thank God I only had to see him a few times a year!) who used to tell me I was wasting my “golden ticket” by staying in teaching because I could “just go out on disability.” He could never understand why I would want to stay in the classroom when I could just “sit home and collect a check.” Clearly he knew nothing of me, my love of teaching or what it was like to be truly ill. You see, to those of us who are chronically ill, sitting home is not pleasant, not a vacation and most of us would give anything to be able to go out and work. It’s the privilege of the healthy to be able to judge the sick and tell us what we should want to be able to do.

So I’m angry. I’m angry every time I tell someone I’m retired and they say “must be nice.” No, it’s not. I didn’t want to retire at 45. It wasn’t my choice. I wanted to work well into my 70s or longer. I didn’t want to retire before both of my parents. I don’t want your condescending look when I say I’ve retired at 45. Just because “I don’t look sick” doesn’t mean I’m not and I don’t need to produce a ream of documents to prove it just because your cousin’s uncle’s buddy is on disability and “he’s just fine.”

I’m angry that instead of taking my two physicians’ statements and believing them, you’re forcing me to navigate a sea of red tape and bureaucracy and paperwork all at my cost. I’ve paid into this for 20 plus years and when I need it I’m told to be patient and provide more.

I’m angry that we live in a society where empathy and compassion seem to be touted as dirty words by the current administration and many of its followers. Where caring for others is deemed beneath many people. The debate about health care showed me just how people felt as I watched people in wheelchairs being dragged out of the capitol building during peaceful protest. And now they want to repeal covering pre-existing conditions? Yet they hide behind campaign promises and rhetoric and lawsuits to do it?

More and more cuts are being made to services for our most vulnerable populations while health care costs skyrocket. The current budget called for an 18 percent cut to the Department of Health and Human Services! With one side of their mouths they rattle the sabre for our disabled veterans while with the other they strip away vital services that would help them, such as food stamps and Social Security benefits. I guess now that I’m labeled “disabled” I’m just seeing things with a keener sense and identifying the injustices. I guess that’s why I’m angry. So I can either stay angry or do something about it. I guess I’ll be working on that.

But first I need to continue to jump through those hoops and miles of red tape while making sure that I don’t let a moment of joy or brief happiness leak onto my social media for fear of the judgment not only from those who don’t understand but those who determine my official status as “disabled.” So while I have always strived to make sure that my illness was never the center of my life, the focus of my story, I’m now forced into this position of making it the center of my life. And that makes me angry. And sad.