If there’s one thing in life we can count on, it’s that things will change. Change is always happening in big and small ways all around us. However, for autistics, change, even small change, can be incredibly difficult to deal with. As people who cling to routines and stability, change is a nasty beast that can knock us off our feet.
Yesterday, I had a doctor’s appointment that I had been anxiously awaiting. It was an appointment with the endometriosis specialist I see in New York City. The day started off well. My mom came to visit so that she could accompany me to the appointment and Husband was doing well enough to join us as well. Our travels went smoother than I think they have ever gone for a trip to the city. We made it to the appointment with plenty of time to spare and had an enjoyable trip overall. Yet, by the time we were leaving the appointment, I was struggling to think straight and felt ready to cry.
Before going in to the appointment, I had an idea of how it would go. You see, endometriosis is difficult disease to treat. There are limited options for treatment which mainly consist of hormonal birth control, drugs that induce menopause, and surgery. I’m not able to take any hormonal medications because I react very badly to them. Last time I was on birth control, I went from a relatively ok mental state to suicidal within 6 days. As such, I’m not willing to try more hormonal treatments, which, thankfully, my doctor supports. We had tried pelvic floor physical therapy as my doctor thinks that a lot of my pain is due to muscular issues from being in pain for so many years. The PT helped to an extent but didn’t provide the relief that it was supposed to. Therefore, I assumed that the visit would be to discuss surgery.
In my head, I had been planning the next few months of my life based around the idea that I would be having surgery within the next few months. I had planned out when I would start applying for new jobs, when I would get certain tasks done by, and much more around the idea that I would be having surgery. Then that all changed.
My doctor is hesitant to do surgery at this time as she’s not sure that it will help. I have been given a multi-step game plan of how we are going to proceed from here that includes trying the Skyla IUD which has lower hormone levels, trying a more invasive form of physical therapy, and trying a new medicine. Obviously, all of these are good steps to take, and I should be happy that I’m not having surgery, yet I couldn’t help feeling distraught by the time the appointment ended.
The biggest part of my distress was the massive change in plans. While they may have just been plans I had in my own head, I found the change very difficult to deal with. Suddenly the nice plans I had laid out in my head of how things were going to go were gone and I’m left with uncertainty as to what the future holds. It’s hard to explain to allistics, but change like this is so difficult to deal with. It’s as if the floor disappeared from beneath me and I was left falling like Alice falling down the rabbit hole. The change hit me like a brick wall leaving me struggling for breath and trying desperately not to break down.
On top of the massive change I have to deal with, the treatment plan is very frightening for me. I’ve had really bad experiences with hormones. I’ve tried a wide range of birth control pills, the Mirena IUD, and the Depo Provera shot, all to disastrous results. Most recently was the Mirena which left me with a constant migraine, horrendous pain, unmanageable mood swings that left me nonfunctional, and more. So, as I’m sure you can imagine, I’m not exactly excited to try another hormonal IUD even though it’s a lower dose so hopefully it won’t be as bad.
I also struggle with the idea of more invasive physical therapy. As a rape survivor, the idea of having someone I barely know do internal adjustments is rather horrifying. The previous physical therapy I’ve done was all external and I still had flashbacks as a result of some of the things we did. I worry that more invasive PT is going to have bad repercussions for my mental health.
Unfortunately, at this point, I’m not really sure what other options I have. If I want to remain on the pain medication I’m on, I need to show an attempt at trying to get better and while the pain meds don’t eliminate pain, they significantly reduce it. With such limited treatment options for endometriosis, I need to try treatments that make me uncomfortable otherwise I am viewed as “resistant to care.”
This has all been really hard to deal with, and it’s made worse by the fact that I feel bad for even feeling this way. Objectively, I can see why it’s not a good idea to rush into surgery. Objectively, I can understand why it’s important to try these other methods before having another surgery. Yet, I’m still upset and afraid and I feel like I shouldn’t be. I feel like I should be happy with the outcome of the appointment, but I’m struggling to do that. Yet, I also know that it’s ok to feel however I feel about the outcome of the appointment. There’s nothing wrong with feeling a particular way, it’s all about how I handle myself. Thus, going forward, I will do what the doctor has asked. I will follow through with the things that make me uncomfortable to see if they might help. I’ll do my best to work on getting better.
Dealing with change as an autistic person can be really tough. Our minds struggle to cope with change, even if the change is only of plans we had in our heads. Yet, with enough time, we adjust and we find ourselves able to process thing better and come up with a new plan. I may not feel better today about the change, but I’m sure that soon I’ll be able to restructure my mental plans and move forward. But for now, I’m going to let myself feel the fear and distress until I’m ready to move on.