lost

it's very normal for people with OCD and chronic illnesses to develop Health and Somatic OCD. if you are someone who has seizures, it is a very real part of your life that you need to be aware of early warning signs that a seizure is coming on. you also need to consider whether you'll be safe and have access to resources wherever you go. i.e. if you have a seizure at the mall, what is your plan? who can/will help?

someone with OCD who has seizures might find themselves endlessly 'checking' their body for signs of an oncoming seizure as a compulsion. checking is emphasized there, because it's a common type of OCD compulsion. the OCD checking goes far beyond reasonable or helpful self-awareness. OCD anxiety is so powerful, the person might even begin to imagine and feel physical warning signs of a seizure that are not 'real,' in that they are not actually about to experience a seizure.

the person might also obsess over every way having a seizure in public might go 'wrong.' yes, there is a well-respected hospital nearby, but what if the ambulance gets caught in traffic? yes, they have a seizure-alert dog, but what if in the very moment the dog should detect and alert, a passerby distracts the dog. what if, although their friends are usually understanding, this is the seizure event that happens at the worst possible time, like during a movie climax, and everyone finally gets fed up and never wants to hang out anymore?

the compulsion then is avoidance. it's not unusual for people with OCD and chronic illnesses to stop leaving the house entirely.

the issue: all of these things not only could genuinely happen to someone who has seizures, but they might be things that have happened to the person with seizures and OCD, thus heightening the reality of the intrusive thoughts.

then it's common to believe that an OCD therapist prescribing exposure therapy simply doesn't understand your other disabilities, how real they are and how in danger you actually are. if they understood, they wouldn't prescribe you an exposure that could put you at risk...

it's no coincidence that OCD latches onto fears based in some realities of our lives. i don't have religious OCD because i'm not religious. why would i be afraid of offending a god or religious authority whose opinion means nothing to me?

whereas the fear of having a fatal asthma attack while i'm out hiking is reasonable. it happens to other people. it might one day happen to me. my OCD can look like taking deep breaths to 'check' for a wheeze. it doesn't matter that i did that 3 minutes ago. i need to do it again! and again. maybe i'll ask my other friend with asthma if it sounds like i'm wheezing. in ten minutes, maybe i'll ask her again. maybe i'll actually begin to feel like i am wheezing. that my chest is tight. that i can't take a deep breath.

this is just one reason why Reassurance as an OCD compulsion does not work. not only does the person with OCD need to be reassured continually, forever, because the relief of reassurance wears off. But not all OCD fears can be reassured. No one can tell me "you will not have an asthma attack when you're out " or "if you have one, everything will go perfectly and you'll be okay."

that's simply impossible to know.

“If I go out knowing it’s risky for me, if I do end up sick/burnt out/injured/fatigued then it’s my fault. I’ll be stupid for having done so and no one will care that I’m suffering because it’ll be my fault, and I wouldn’t deserve their compassion anyway.”

Ofc people with chronic illness & disability can experience these feelings without OCD. This is just OCD-specific for me; OCD tries to convince me to deny myself the dignity of risk.

“When my husband died, because he was so famous and known for not being a believer, many people would come up to me – it still sometimes happens – and ask me if Carl changed at the end and converted to a belief in an afterlife. They also frequently ask me if I think I will see him again. Carl faced his death with unflagging courage and never sought refuge in illusions. The tragedy was that we knew we would never see each other again. I don’t ever expect to be reunited with Carl. But the great thing is that when we were together, for nearly twenty years, we lived with a vivid appreciation of how brief and precious life is. We never trivialized the meaning of death by pretending it was anything other than a final parting. Every single moment that we were alive and we were together was miraculous – not miraculous in the sense of inexplicable or supernatural. We knew we were beneficiaries of chance… That pure chance could be so generous and so kind… That we could find each other, as Carl wrote so beautifully in Cosmos, you know, in the vastness of space and the immensity of time… That we could be together for twenty years. That is something which sustains me and it’s much more meaningful… The way he treated me and the way I treated him, the way we took care of each other and our family, while he lived.

That is so much more important than the idea I will see him someday.