I’ve been waiting nearly two months to see a GI doctor. Constipation is all something to laugh about, until your large bowel 100% stops moving. Until you don’t “go” without significant intervention, every time, for over three months. I won’t go into any more detail about what I’ve been through and go through to avoid the gross-out factor, but I’ve been quite literally counting the days for these appointments (“these” because I had two appointments scheduled, each with a different doc in a different hospital systems).
I had an “expert” GI doc at a major medical center… only, he was completely unable to treat me effectively and flat out ignored my issues. We are well aware that my stomach doesn’t really move food anymore; I get much of my nutrition, fluids, and meds through my feeding tube. He just refused to even give advice about the other issue. In the year that I saw him, I think I got under his skin. He is a textbook kind of guy, and, well, my body didn’t read any of the textbooks, so when you plan interventions, let’s just say that it’s a safe bet to expect freaky results. The doc finally threw up his hands and said that he thought I was feigning my illness.
Turned out my PCP thought the same thing… and my family kind of did too, and while inpatient, the word Munchhausen’s was thrown around.
I sobbed, and I sobbed. All I would say, over and over, was, “But I don’t lie!” They told me that I was lying to myself, that maybe I didn’t think I was lying, but that I had to be. They told me that I love medical stuff and light up when I talk about it… and yeah, that has been true for pretty much forever. I didn’t know what to believe. I tried to explain why I did what I did but was not able to do that to any real effect.
Yesterday, I saw another GI. She came in and basically said she make me normal, no more tube, eating food, pooping, the whole bit. She went on about this med and that med and this test and that test and maybe this surgery and… I started to freak. I dug my heels in. I got upset, saying no, I WANT my tube, and, I don’t want to do that test, and my insurance doesn’t cover that (we’ve already tried), and… basically, I argued, which my family noticed tends to be my way with doctors. So, they see a girl who doesn’t sound like she wants to get better, refuses treatment, and knows nearly as much as they do about her conditions and the options for treatment, the side effects, and what the insurance will cover. They see a crazy girl.
For a little while, I thought maybe I was crazy, but I didn’t think I was, but since everyone else said I was… I was utterly confused and more than a little upset.
When my mom and I left the appointment yesterday, we talked for probably the next three hours about what had gone on. She told me that the doctor was trying to be positive when she said I’d lose the tube, but that she didn’t mean right away… she meant when I was ready and only when I was ready. We talked about the fact that, although the doctor made the procedures sound like they always work and have zero side effects, that we know that isn’t true and that I don’t have to dive head first into everything. She said yes, that the doctor probably thought I didn’t want to get better… as we talked, I could tell my mom started to see underneath what was coming out of my mouth under the stress and realized there was a lot more going on.
I emailed my mom once I got back. Here’s (most of) what I wrote:
1. I didn’t feel well today… I had that wonkiness I used to get in the evenings (tired, light headed, hot flashes), plus my bee sting hurt, and my stomach hurt. I also started to get really tired, and we were under those dang fluorescent lights a lot today. The result was that I was just out of whack. Body out of whack tends to beget social withdrawal and struggling to communicate effectively.
2. I heard myself arguing with the docs today and I finally understand why I do it. It’s the same reason I fart cross ways (that’s a family expression but I left it in for reader’s amusement on our account!) with everyone else, too, which is because they are not following MY plan and MY script. When I feel anxious about something in the future, I start to imagine how it might go in my mind, and over time, I develop sort of a script for how it is supposed to go down. When someone deviates, I cannot even allow myself to back up and say, hey, this sounds like a great idea, because all that is in my mind is that it is the WRONG idea. And that isn’t something I’ve been able to communicate very well as of yet.
3. That anxiety was all I felt during the appointment, for that reason, in addition to the thing about losing the tube before I’m ready. I do NOT want a tube that I don’t need! I just want to be sure I don’t need it, first. Once we talked through things and I was reassured of that, I felt somewhat better, and now that I’m in my space, with the lights off, feeling way less overloaded and anxious, I’m actually really excited about the prospect of improvement. I never wasn’t, I just was not able to communicate that.
4. I am frustrated to pieces because I am just so horrible at communicating, and the result is that I don’t say what is for real, my real thoughts and emotions and real reasons for my words and actions. Then, it looks like I’m completely crazy… I want you to know that even though I’m well aware of how it looks, and of my stupid behavior, I am not able to stop doing it, at least not yet. I saw every bit of it today but was just TOO out of whack. Conversation goes too fast, people are too loud, the lights, my arm, I feel wonky, it’s all just… my brain just short circuits.
5. If my behavior doesn’t make sense or I start to be difficult, PLEASE give me a break and maybe stop the conversation until we can type. That is REALLY the best way of communicating for me. I get revved up the more we talk and everything falls apart. I am able to explain what is going on when my body isn’t out of whack and overwhelming my neurological processes, whereas if you talk to me verbally, you will just get whining, complaining that I don’t feel good, zoning out, snapping, and a WHOLE lot of digging my heels in.
6. Here is what I want to do: I want to go forth with the bowel cleanout and the scopes, then I want to start the Amitiza samples and see what the deal is with insurance and Linzess. If you are willing and comfortable paying for the domperidone, I might be willing to try that. If it comes to that surgery, I don’t think I want to proceed… that surgery is permanent. There is no going back. It is far from without side effects and can really make things worse than they are right now. I don’t want to get into permanent. I understand that other people don’t understand my comfort level with my hardware. All the reasons I have cited… base line decent nutrition, fear of having to redo the surgery, and just the fact that I feel like what I’m doing is livable. If I had a surgery that made it so I couldn’t eat at ALL? That would be way less livable. This… I can handle, even if it’s not ideal.
I was so worried about what my mom thought about what I perceived was wretched behavior during the appointment. The problem is that I come across as very, very intelligent and capable… and it’s basically impossible for anyone (who isn’t my mom or my BFF, Leigh) to even fathom that what is coming out of my mouth is basically a hot mess.
When I met with the fellow, the first thing I told him is that I have ASD and I am socially different and struggle to communicate what I really mean, sometimes. The problem is that, when it actually happened, I am 99.9% certain that the doc didn’t make the connection… because I SOUND like I am in control of my words and actions, when I really feel fuzzy and sensory overload and am not steering the verbal ship anymore at all.
My absolute biggest concern was my mom, though. If my mom understands what’s up in my head, then she does an amazing job of making that understood to the doctors. I know that at some point, I will have to learn to function on my own… but guess what? Now is not that time. I’m NOT ready. If my mom can no longer do it and I still need help, then we’ll cross that bridge later. My mom is amazing at helping me and supporting me to do as much as I can on my own, but when I get in over my head, she either supports me to smooth things over or steps in.
My mom’s response to my email was amazing:
My dear Lydia,
I thought you did pretty good today. You have nothing to be ashamed of, your behavior was fine. It helped so much when you explained to me where your fears were coming from and I can see now your hesitation. I should have thought of that sooner and I apologize for my insensitivity. I did not stop to think about you went through to get to this point. Your are stomach issues are stable and manageable now and you fought so hard to get to where you are.
You should proceed cautiously one step at a time and rightly so, not being forced into anything. We did a lot today but it was all good, you did a great job hanging in there. Sleep tight. Kitties are fine. Goose back on her old bed in the turquoise room. Gave her some pets.
I think my mama deserves to be in the Autism Moms Hall of Fame 🙂
I will either leave a message for the doctor to let her know that I AM excited about the prospect of getting better but that it was news I wasn’t expecting and that threw off my ability to communicate effectively, or I will tell her when I see her again.
I repeat, as I said in my last post, that THIS is why autism awareness and acceptance matters. Because people in the medical field say oh, yeah, autism, great, we’re fine with that! But, when autism effects my real-time, real-life issues during an appointment, they don’t have enough autism awareness to actually recognize that it is behind the behavior. That is a very disconcerting and dangerous disconnect.
Maybe I will print this or write up a thing to put in every one of my medical charts.
Takeaway message is this: Autism awareness has to be more than teaching people that autism exists; we have to teach them (medical professionals more than anyone) how autism affects real-time, real-life situations. Also, even highly verbal people with ASD can have a very difficult time communicating… I am ALL about emphasizing strengths, but don’t do so do the detriment of supporting us in our weaker areas.