I'm not sure where it comes from. My family was pretty dysfunctional and I grew up in a neighborhood where my oddness got me beaten up and humiliated on a pretty regular basis, but that doesn't quite explain it.
I have always swallowed physical and mental pain. Yes, I know that isn't healthy. I saw a therapist while I lived in Chicago, after my marriage broke up in a pretty terrible way, and kept seeing her to work through some of my guilt and anxiety issues and she thought I was pretty damn sane considering my strange upbringing. I'm no longer afraid of most strangers, tho I still can't really handle parties or networking events without wanting to cry, but I've read there are many normal introverts who feel the same way so I'm pretty okay with how I am on that front now.
But I find myself near tears a lot recently. I think it's just strain. Of multiple situations but all because of the Ehlers-Danlos. And I really can't share it much with those I care about.
When you have a condition that is not ever expected to improve, you end up talking about different variations of the same crap. No matter how much they love you, no one can take that on a regular basis. My stories are all variations on being tired, being in pain, being nauseated, dealing with the government as I work my way through the maze of filing for disability, losing the physical ability to pursue the career that I so dearly loved (and not being able to even offer to work for charitable organizations!), and feeling guilty that I have screwed up people's lives because now they have to take my disability into account for plans from simple shopping excursions to foreign travel that has been planned for years.
I looked for therapists to talk to that are covered by Medicaid (yes, I'm on Medicaid - a year after the government declares me officially disabled I am supposed to qualify for Medicare), but most of them seem to be specializing in addiction (I also need to add an endocrinologist to my physician team, but the ones covered by Medicaid all work in clinics and seem to deal almost exclusively with diabetes - my PCP says none of them would be a good fit to handle a rare condition like mine).
I finally realized I could contact The Actors Fund - love them! So I got a referral to a psychotherapy center in Brooklyn. This center is also connected to a drug abuse clinic. I tend to think their receptionist answers the phones for both. When I told her I only needed to see someone maybe twice a month, she was stern in informing me that it had to be weekly or nothing - did I still want to do an intake? I said, okay, I'll come in and see how it goes. "NO!", she said, "You cannot see how it goes! I need you to understand this." I had to accept that if I came in I was staying and would see someone once a week and if I didn't accept that I could not come in!!
Wow. I felt like I had been court-ordered or something. When she asked about the referral and I told her the Phyllis Newman Center, and she asked what they did, and I said they help women who've been diagnosed with chronic illnesses, her attitude did not change much...
Anyhow, the therapist is supposed to call me and get some insight into what I want to be seen for - I can get a better feel for whether or not this will work then. But this is NOT a good start - especially for someone like me who doesn't want to ask for help and is having guilt issues anyway.
I'm also supposed to meet up with one of my favorite people (& occasional director), Austin, after his show on Wednesday. While I know he's heard about what's been happening with me healthwise from our mutual friends, we haven't talked about my condition yet. (Austin labors under the charming delusion that I am extremely talented - a delusion that I happily try to encourage!) How much do I share about stuff like this with my friends, before I sound whiny? Or bitter? Before they just can't stand the strain of talking to me? I try to tell my stories with humor and a smile, but eventually it must just drag people down...
How much is too much to tell the people who love you? When does even just the basic information about how I'm handling this become too much of a burden for a normal human being?
Sorry this post has little - if any - humor. It's a pain day.