Disability is defined as a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits, a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions and as an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment. (from www.merriam-webster.com/dictionary/disability)
By both parts of that definition, I am disabled. My conditions, all put together, significantly limit me on a daily basis and I have not been physically able to work a full-time job, or even a regularly scheduled part-time job, for years. It's been a struggle as it is to educate my children, be my son's aide twice a week at school up until this year, and squeeze in as much side work as my body will allow.
This has been something that has been very hard for me to come to terms with. I kept hoping things would get better and I would miraculously go back to the functionality I had for most of my life. It is amazingly hard to accept that this body that I inhabit, that for years was very responsive and obedient to my wishes, that allowed me to work construction, do marathon arts and crafts sessions, and that birthed, fed and lugged around two children, now can't pick up a gallon of milk some days.
It was even harder to come to terms with when so many people kept saying things like, "Oh, it's just the aging process. Everyone has aches and pains when they get older." I'm turning forty-two this year. The vast majority of forty-two-year-old women with my history and habits are not in constant pain every day, but the message of "Suck it up and deal," is a very powerful one in our culture if you are young (enough) and appear to be healthy.
That's the other thing, I look healthy. I'm not wheelchair bound. I don't need a cane (most days) or slings/braces (also most days). Generally, none of my issues show on the outside. In fact, to try and improve symptoms, I lost a lot of weight. Now I am more slender and still have all the health problems I did before. People notice the weight loss, not the limp (in part because the physical therapists pounded it into my head to avoid limping if at all possible) or the careful way I have to get up and down from a seated position or the fact I often avoid carrying anything remotely heavy or how I freeze when faced with sudden change.
The long road to finding actual diagnoses did not help the process. It was one problem stacking on top of another, stacking on top of another over years. It turns out in the end that many of them are intertwined symptoms rather than diagnoses on their own. The whole process, from beginning to end, from the time I first started trying to solve some of the related health issues was at least five years.
When I finally admitted to myself that maybe, just maybe, I'm not going to get back to a point where I can work reliably, I looked into going on disability. What I learned is that the system is rigged against people like me. It sounds cynical, but unless you have worked enough in the past five years to have earned enough credits then you do not qualify for SSDI. I obviously haven't because I have been disabled and trying to recover to a point where I wasn't and, on top of that, I was raising my kids, homeschooling, and acting as my son's aide on a volunteer basis, none of which counts for disability credits.
I also don't qualify for SSI which is where I was pointed when the credits problem was explained. To qualify for that, I would have to get divorced and get my name off one of the cars, close my business bank account, etc and so on because we make too much as a couple for me to qualify for that either. The cut-off, by the way, appears to be $1500 a month for a couple at least in California and you can't really have any property of any value. While that is just above the federal poverty level for a couple, we have two dependents which doesn't seem to be factored into the SSI information at all.
Not to mention that finding ANY clear, concise information concerning requirements and income levels and all of that is a full-time job in and of itself and caused me massive anxiety attacks. The Social Security Office wasn't helpful. The local support agencies weren't helpful. Even my health insurance company which has a kind of advocate for such things wasn't helpful. It feels like the whole process is set up to make people give up.
(This was written the summer of 2018 and I forgot to publish it then. Some things have changed and I hope to post about them soon, but I figured I should put this up in the meantime.)
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