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By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter February 2019*
In speaking with a parent recently about my work in the Ask A Self-Advocate Program, I mentioned how there can be an element of grief intertwined with the presenting issue. She immediately launched into an explanation of her grieving process following her child’s diagnosis, and while her experience is truly valid and important, that wasn’t what I had meant. I was referring to grief that can be experienced by the person with the exceptionality, and that may not occur at the time of diagnosis. Depending on the individual, periods of grief may recur over the course of our lifetime. At various life stages, we may need to lament our exceptionality before we can come to, or return to, a place of acceptance.
As someone who acquired a diagnosis of an invisible disability as an adult, my grief process may look different than that of someone who was diagnosed early in life or whose difference is more visually apparent. As validating as my diagnosis was in saying, yes, my struggles were real, it also solidified the fact I have an exceptionality, and I always will. I grieved the help I needed but never got. I grieved the psychological scars that developed over time because I didn’t understand why I was different. I grieved the years I lost trying to be something I wasn’t. I grieved the relationships that were never formed and the career that didn’t turn out as I expected. And of course I asked the question, “Why me?”.
This was an important and necessary process. I needed to come to terms with what I have been dealt in life. To get to a point where I was okay with it, a point where I was ready to move forward. This was not something I could rush. As much as I cognitively understood that my own self-acceptance would pave the way for the acceptance of others, I couldn’t force it.
With time, I gained an understanding that this is my journey and let go of the past. I learned more about what challenges I face, and I learned how to carry them with grace and self-compassion. Once I accepted my limitations, I had more energy to figure out how to work around them. The more I become comfortable with myself, the more others are comfortable with me and the way I operate. I acknowledge that, yes, sometimes things are hard, but that is okay, and I can get through it with the strategies that I have developed and with the help of the support network I have built. This didn’t happen overnight and required a lot of dedicated effort.
But then I get surprised. Something happens. Life changes. I start a new chapter. And my exceptionality suddenly takes on a new, and often unanticipated, meaning. I have to learn to navigate my disability again, just when I thought I’d sorted things out. I have to unpack what living with a disability means for me now in this new scenario, and sometimes that means I need to grieve again. Grief that my needs force my family to do things differently. Grief that the timeline of my life looks different from my peers. Grief that there will always be things that are hard for me, but easy for others. Grief that I still have a disability (because I got so good at managing it, I sometimes forget it is there).
For example, when my daughter started school, I knew she would need to adjust. But, I completely underestimated the way this new aspect of our lives would impact me directly. New interpersonal connections to navigate, new social expectations to decipher, new routines to adjust to, new demands on my limited organizational abilities. And I grieved again because these changes directly collided with areas where I tend to struggle. Just when I thought I had reached a new level of self-acceptance life happens, and I start to question things again. Let me be clear, I don’t sit at home wallowing in my own self-pity. My disability doesn’t cause suffering, but it does create challenges I have to work through. New strategies are required. I have to figure out what I need and then advocate for it. Over time, the periods of acceptance in my life have become greater, and the periods of grief have become smaller.
Grief may revisit us across our life stages, but hopefully, you can see there is cycle and that acceptance can prevail. I felt it was important to highlight that grief is not a process unique to the family members of an individual with an exceptionality. Grief can be a part of the exceptional person’s experience. And even for those who are aware of their disability from very early on, it will take on new meaning for them as they grow and develop, as they see how they are exceptional in a new light and what that will mean going forward. What it means for them in middle school, in high school, as a young adulthood, starting a new job, in middle age, and so on. I have to actively accept my limitations on a daily basis, and then embrace the gifts that lie within my differences. And I go about my days leading a full life, just as anyone else tries to do.
If you or your family members would like to discuss this, or any other topic, please reach out to Cristina through the Ask A Self-Advocate program (AASA). As with all WRFN programming, the AASA program is provided at no charge.