Chronic Diva

I stopped working almost two years ago now. I had been working for the school district for a before-and-after school care program. It was a pretty good gig at the time. It paid well and while I had to be at the elementary school at an un-Godly hour, I was done at 8:15 and didn’t have to come back until 3pm and I liked the kids. It wasn’t day-care and the kids were always engaged in an activity and I really enjoyed it. My reason for leaving was surgery. I had sacro-iliac joint fusion and not only was it a painful recovery, but I did not have the success with it I was hoping for. My reason for not returning was in-part because of the less than satisfactory result of surgery, and because of the nightmare that my chronic illnesses had become and the pain I was in and still am in.

I decided to move forward with disability and (at least in my state) I could not be working while trying for disability. Two years later, and a lawyer involved on my behalf, I still am waiting on a hearing date and have not worked. Making the decision not to work was not an easy one. I think that even those closest to me may think it was the easiest decision in the world, but it wasn’t. It was the hardest decision I ever had to make and I’ve made some pretty tough decisions. Having a job is not only something that provides for your family, but also makes you feel like you are a capable and functioning adult. When you have to decide that you can’t work, not only are you cutting out a paycheck that helps your family live better, you are cutting out something that makes you feel independent and complete.

I deal with a lot of guilt over my decision to quit working because of my health. I see how my husband has to pick up the slack and how hard he works so we don’t feel the impact of my not working as harshly. Still, when life happens and we are faced with unusual expenses like when one of our dogs became extremely and suddenly ill, that absence of a paycheck is acutely felt. It’s not just guilts about the lack of a second income, it’s guilt about not doing my part. I have two parents who worked extremely hard all throughout their lives well past the average age for retirement so they could live comfortably and because all they’ve known is work and if they were hale enough to work, why stop? I think retirement was hardest for my dad and even know he keeps himself busy at 81 years old and volunteers at the local hospital in their ICU. I am 44 years old and looking at disability and feeling like crap because I don’t feel like I am doing my part.

Not working has a unique way in demoralizing you. There are simply so many things attached to having a job or career. Self-esteem and independence and pride you feel when you do well at your job, a paycheck that is yours and that you can spend as you see fit, and the benefits that come with a job that can help to secure a comfortable future when you do retire. Not working at 44 years of age brings skeptical looks from people as well as pity. “Oh, you poor thing.” Or “Isn’t that a shame.” My favorite, “At least you’re married.” I feel as though I am no longer ranked among the adults of my age. I am an adult, sure, but an adult that has to be taken care of. I am a burden on those that I love. And don’t think I haven’t considered some very frightening possibilities, like what happens if something befalls my husband? Would I have to rely on my daughters to help me live? Would I be forced to work despite all my issues and would I be able to keep a job or would I be jumping from job to job because I get fired because I am sick? It’s humiliating and keeps me up sometimes worrying.

As I said earlier, the decision not to work anymore and seek disability was not easily made. I looked at every issue that I struggle with on a daily basis and the many jobs that might be available to me, with my education and skills and determined that the unpredictability of a couple of my issues alone makes it extremely difficult to be relied on as an employee. Debilitating migraines that come on suddenly and cripple me for anything else but laying in a dark room and praying that it will pass quickly. The IBS-d that doctors can’t treat effectively because I take opioids and so every couple of weeks I am in agony and running to the bathroom. The seizures I have, that even though I am on meds I still have absent seizures that make it dangerous to drive. The pain I am in daily, whether it is all over my body because of the fibromyalgia or specific to joints because of the RA make my life unpredictable and makes simple things like getting out of bed hard, never mind going to a job for 8-hours a day. The opioids I take for the pain which make me a risk on the road and dull my mental acuity. There is nothing I can do for long periods of time that don’t cause me pain. Standing, sitting, walking and even laying down for too long hurts. I am at risk for falling because I have balance issues and I use a cane for both balance and because my SI-joint hurts all the time. All of these factors and more were brought into consideration when I decided I just can’t work. The more? Looking at it from an employer’s point of view. Who would want to hire me? And if they did hire me how long would I last before “reasonable accommodations” became tiresome and before my absences became something they could not overlook anymore? I don’t think it would take long. Employers kind of like hiring reliable people. I am the antithesis of reliable.

I suppose my final thought would be extended to those who are able to work, to not look at those of us who can’t with disdain. We’re not being lazy. We’re not sitting around at home all day eating bon-bons. Chances are that we feel horrible about not being able to work. Chances are that we feel extremely guilty that our partner is out there working every day and we can’t help. We make a great effort to do what we can at home so that we can feel useful but it will never compare to going out there day-after-day and working, sometimes over-time and holidays to make up for the other partner needing to stay home. And understand that we are grateful. That we understand the great sacrifice of our partner has made so that we can be home. Staying home is tough.