Tough Times

Dear Friends,

I have been really struggling especially the past weekend. When my dysregulation takes over and kicks my OCD and panic response into high gear, I feel like a monster. That is not an exaggeration. I was truly disruptive in ways that caused distress to my family.

I don’t know how many can really understand this if you don’t have firsthand experience with my flavor of this disability. It is such a cruel disability in many ways. It is not just that my body won’t do what I want. It is also that it often aggressively does what I don’t want it to. It is not about being ashamed of my disability. It is about realistically facing the worst parts of it.

I am so upset about how I acted and I don’t need comfort or assurances, though I appreciate the urge to share both. I need to be able to share my frustration and have it heard and validated. I know it is not my fault. I know it is my disability. I know we all wish we could live in a world where dysregulation is not disruptive to ourselves and others, but we don’t and some realities are hard and we need to accept that. And I know many activists try to stifle the experiences of families and caregivers, because somehow they feel that those people can’t also suffer. But I know the pain and stress of my family when I am out of control, and it is not them being selfish or ableist. They love me wholly, and they are trying their best and are doing more than most could in their shoes.

I am trying to continue making progress in my regulation through therapy and almost constant effort and a healthy lifestyle. I have made remarkable progress over the past couple of years. But it is a long and difficult journey. I am so confident I will be ever stronger, but it is also my reality that such tough times will likely always be in my life. And I am allowed to be sad and upset by it.

Your Friend,


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