One of the responses I've (accurately or otherwise) read into people's facial reactions.
There was one day at the Baltimore conference recently when I completely broke down. I think I had just been to a talk by an OB/GYN about potential pregnancy complications with EDS. They were relatively few, which I found to be a refreshing change. I don't think I was sobbing over the talk, but what it made me realize.
I want kids. Very badly. But when I hang out with small children, all I can think of is how ill-equipped I am to handle them right now. I can't lift them. I don't have the energy. If I have a terrible dysautonomia episode and can't function or stay conscious, what will happen to them? I don't want kids to see me in so much pain. How can I feed them if I can barely feed myself?
The list of questions and fears goes on and on. I became determined to figure everything out and get treatment and symptom management under control before trying to get pregnant. But I also have hormonal issues, and likely PCOS, which will make conceiving difficult. My last cycle was 43 days, and I bled for more than half of those days. For all I know, it's a multiple-year journey for me to even get pregnant. And as I'm constantly reminded, all of this gets harder around 30, and much much harder after 35. If I'm 27 now, am I ruining my chances of having biological children by waiting until my body is actually ready? Being the determined never-say-can't person I am, I just need to work harder to get the trifecta of illnesses under control, right?
These were all of the subconscious thoughts leading to my breakdown. Because the more talks I went to, the more I understood just how complex this disease is, and the more it felt like a 10-year undertaking, rather than a 1-2 year project. My mom joined me at the table where I was just trying not to weep too hard in public, to say that she'd finally spoken to Jon Rodis, the man who'd presented about his life with Marfan's Syndrome, who works as an advocate for EDS patients trying to get on disability. She'd asked him if I should try to get disability for a year or two to just get everything under control. He said that, although it did seem like the right move for my life, the odds of someone like me getting disability were very slim, and it would be a long exhausting road to even try.
Someone like me; I'm young and look quite healthy. I can see it in people's faces when I open up about how sick I really feel. They just can't fully believe it. And I don't blame them -- invisible illness doesn't make sense. I've been working so hard all my life to hide my pain and symptoms that I could be feeling a million things and no one would see.
So disability seems to be off the table. I didn't want to admit it, but I'd come to the same conclusion as my mom -- I desperately wanted to take a year off to get back on my feet. I've never wanted to be someone taking up other people's resources, but at a certain point I couldn't ignore that the long term benefits could be huge. But it's not an option, so there's no point in dreaming. I need to figure out how to make this work while making enough money to support myself (and my medical bills).
I barely have the energy to work 30 hours a week. Added to that, I require more than 8 hours of sleep each night to not fall apart. That's 40+ hours. Cooking and eating in ways that won't make me sick take 30 mins at the very least, but often an hour per meal. I sometimes require more than three meals, by the way. Because my foods need to be super fresh, I end up going to the grocery store around three times each week. Then I need to exercise for about an hour each day in order to keep my joints from falling apart. If I crash from doing too much in a day, it takes anywhere from an hour to the rest of the day to recover in bed. I spent 19 hours in a row lying down this weekend, to recover from simply doing my job all week. So ideally I'd spend an hour or so each day on some form of self-care, whether meditating, painting, or just being horizontal on the couch with an ice pack over my eyes listening to music. I also try to do an hour of therapy each week to process all of the stress and emotions involved in being chronically ill. If you add in time commuting, doing laundry, cleaning occasionally, and other things that pop up throughout the week, we've already filled the hours.
And that's just maintaining my current state. That's not working towards improvement. I hope you'll notice that also doesn't include any sort of social life.
So when I picture maintaining all of this while adding a baby to the mix, my head spins and I lay down.
In order to actually improve, I would need to see several doctors more regularly. Some of them are located in places like Boston, NYC, and Baltimore. This is a two-day trip, led by a day of planning/prepping, followed by a day or two of recovering. How do I do that with a job? Then there are all of the millions of tests that I need to get in order to start managing the complications like Sjogren's, small fiber neuropathy, mineral deficiencies... Those tests would involve planning, seeing a doctor to order the tests, getting the test, looking at the results with a doctor, making a plan, and then however much time per week in implementing the treatment plan. Some of these tests are simple blood tests. Others involve skin biopsies or colonoscopies. (Yeah, I'm pumped to have my second colonoscopy before I'm 30).
If that wasn't enough, then there are the millions of phone calls with my insurance company which will, inevitably, have some issue with covering the tens of thousands of dollars I will be billed on my non-profit salary. I will likely spend hours on hold and then hours debating and advocating for my insurance company to simply follow through with the promises they made the last time we spoke, and then calling doctors and hospitals to ask to delay my payments until it's all figured out... I truly never would have guessed the time, physical, emotional, mental, and monetary toll of just paying medical bills.
And then there's the the work that only I can do -- tracking my foods so that I can get beyond the 20-something ingredients that I currently eat; creating a pain diary to try to reverse the central sensitization that I've acquired from decades of pain. Organizing all of my medical info into a binder to bring on visits to doctors.
At some point I would also like to have the time to repair damages in my relationships with friends, family, and even my marriage, from the simple offense of being too sick to be a good person.
Sometimes I even dream about having the time and energy to be a good citizen, like volunteering and attending community events. I would love to have time on weekends to paint to my heart's content, to feel a sense of purpose or fulfillment.
So if you wondered at the start of this piece why I would need disability, I hope you understand the time it takes to work through this stuff. Since I already start with a limited number of spoons, it's really difficult to accomplish everything needed to keep me functional, let alone improving.
I actually meant to write something entirely different for this post, but this is what came out! I wanted to lay out the incredible multi-systemic complexity that a connective tissue disorder can cause. I will write more on that at some point and link it in here.