For the last twenty plus years I have wrestled with guilt. I call it, “survivor’s guilt,” as a riff on the original meaning. I survive today because programs exist to support people with disabilities at a rate far greater than the past. Yet there is such a stigma attached to using them when your disability is invisible.
I find that people feel very able to judge you based on what you were able to do one day. My year tends to look like this, in various patterns, but essentially: 3 good months, 9 shitty months. I average about that amount of time where I’m pretty functional and able to accomplish all the things and have a huge new optimism about life being great from now on! Until it’s not: AGAIN. But what everyone around me judges me on is one great day in those few good weeks.
Just because you can’t see the pain or suffering, doesn’t mean it isn’t there. Just because I could last week doesn’t mean I can this week. Just because you saw me as so able at one point, doesn’t meant I’m not disabled ALL THE TIME.
I often wish I was a harder person with a thicker skin. I just take in what everyone says through the thin membrane of myself and then give it all the weight I’d give any argument. My empathy and understanding are twisted around and used against myself. Am I that bad? It’s not THAT BAD. Other people have it worse. Maybe I am just a whiner. Maybe I don’t really need this support or that support. Maybe if I just tightened my boot straps, told myself to work harder, pushed through it, did more….
And down I go into a shame/guilt spiral, yet again, because I lack so much self assurance that anyone can cast doubt and make me question everything. What it ends up being is a simple guilt for living. Clearly I am costing others so much by my very existence as I am not self sustaining and a burden.
I get to that place. I sit there a while. I question everything. And then I slowly start to come back to myself. I remember that I did work and earn my benefits. I remember that I paid into that insurance policy of social security disability insurance. I remember that it wasn’t me that made any determinations, but multiple doctors and federal, state, and county employees. I remember what life was like before I had medical care. I remember the total humiliation of bankruptcy that it brought on. I remember the stress cycle that worsened my conditions, that worsened my stress, that worsened my conditions and I thank god that I had options to break out of that vicious cycle and create a small life of quality.
Eventually, I get angry.
Not just at others who think they are the judges of the world and me, but also at myself for letting their poison and doubt creep in. For letting the unnecessary emotions of guilt and shame tell me what I can and cannot do and what I do and do not deserve. For filling my head with, “shoulds,” and the need to justify myself.
I was born, as we all are, into different levels of suffering and as such, we all are entitled to a life. I have little control over what is happening, what has happened, or what will happen in my body. I do what I can to keep myself as healthy as possible while often facing derision to do it. I am constantly working to believe in my right to exist and to let go of the shame that keeps me trapped in a life smaller than it could be.