I struggled to find the words to describe my experience living with what some refer to as invisible illnesses. As many of you know, I have several mental illnesses that impair my daily functioning. Having an invisible illness is a daily game of managing expectations and adapting to what each day brings. I have to manage my own expectations of what I can do and manage the expectations of how others expect me to perform.
Some times I have to miss meetings or events because I am trapped within my own brain, within my own body. I struggle with fatigue, migraines and widespread pain. I struggle with major depression, anxiety and obsessive-compulsive disorder. I struggle with panic attacks and night terrors. I get stomach ulcers and am constantly nauseous. I struggle to get a few hours of sleep every night. I get hot flashes and trembling nerves through out the day. On the outside, I may seem to be neuro-typical and like every one else. However, on the inside, I struggle daily to perform daily tasks and accomplish life goals. Some days, I struggle to get out of bed or to stay out of bed. I struggle against my own brain chemistry to live a productive life. It is frustrating and at times I wish it would all go away. There is no definitive blood test or physical test I can take that affirms my disability. There is no outward sign of my inward battle. I realize that I am blessed in the sense that my disabilities do not require outside supports other than my service dog, Zohar. However, it can be difficult to explain an invisible illness to others. It is difficult to explain what help I need and why I need it. Sometimes it is difficult to get others to believe that I am disabled.
I also have physical illnesses that I struggle with. For a combined almost two weeks of this month, I was in the hospital with kidney problems. It was a struggle to miss synagogue, it was a struggle to be alone. I felt stuck and trapped. It was the same hospital I went to when I was raped and I saw the nurse that had done my rape kit a few times. I never said anything to her because every time I tried, all the emotions came back. It was a very difficult time. It still is. Every day life affects my mental health, and the same happens to you. When you have a bad day, you feel bad. When you have a good day, you feel great. When I have a bad day, I don't just feel bad, my whole body feels bad. Stress causes my joints to ache, my depression to get worse and my anxiety to sky rocket. I've had to learn coping skills to make it through the day.
What I wish I could explain to others is that I need patience, I need support and I need understanding. Even if I do not look sick, I am disabled. Even when I seem fine, I may not be. I need patience and understanding like many others do. I need patience when I miss those meetings and events. I need support on those days when my body and mind are fighting against me and I feel alone. I need support sometimes when I can't handle life. I do not expect others to instinctively know how to help me or what accommodations I need. Having an invisible illness means that I have to communicate my needs and open room for dialogue. Dialogue requires two parties and I need the other person to meet me halfway. I need there to be an interest in a relationship.
As a Jew, it is important to me that we leave room for those with disabilities to come to the table. Or, when necessary, to bring the table to them. Jewish Disability Awareness Month should not be just a month but it should be an effort that is made by all, including myself, all year round. Without some of the help and accommodations that I have received, I would not have made it this far and I would not have the life I have. I think this month is a great opportunity to open dialogue about how we can do more and what needs done in our own community. I am not my disabilities but they are a part of me and a part of my Jewish experience. They are a lens through which I view the world, including Judaism. I am honored to be a part of a community that strives to not just accommodate but to include all people.