Almost every medical professional and lay person I've ever interacted with has been very anti-assistive device. (The only exception is low vision specialists who would offer me magnifiers and get upset when I said they didn't work for me.) The reasoning I've been given is that I should do everything I possibly can without help. Using tools will make things too easy for me and I will get weaker, do less, or some other bad thing will happen. If I suggested any sort of assistive device it was viewed as proof of “attention seeking behavior” and my inherent laziness.
From what I've read online, some doctors will advocate assistive devices to their patients. Some patients refuse them. I suspect that the patients who refuse the recommended devices might stick out in the doctor's mind. So doctors may set up a dichotomy in their heads between the types of patients who fight against assistive tech and those who ask for them. Doctors seem to judge patients in each group differently. Those who actively seek out assistive devices come across as demanding and wanting attention. While those who resist come across as strong and independent. In my mind, neither group is better than the other.
Since I pushed for assistive tech, I've had to figure out solutions on my own. We even ordered my wheelchair without consulting a professional. Overall, we've come up with the right solutions. I have a shower chair, a support cane, a wheelchair, a jar wrench, and other assorted gadgets. However, I've been asked why I use them by people who know that I'm sick. There always seems to be this question of “do you really need that?”
Some days I don't need the tools that I have. Other days they make things possible. They always make things easier. Somehow, wanting to do things in an easier way with less pain feels wrong due to the messages I've received.
So, when in the beginning of May I subluxated my left wrist so badly that it would no longer stay in place I wasn't sure what I'd do. After two weeks with my arm in a sling I realized that I needed outside help. So, I called my general practitioner and asked for a referral to occupational therapy. I'd heard that other people with Ehlers-Danlos syndrome had had some good experiences with occupational therapy so I decided to risk it.
Occupational therapy has been one of the best things I've ever done for myself. My OT's L. and A. actually listened to me in a nonjudgmental way. Due to some changes in how my referral was sent over they had already done some research on Ehlers-Danlos syndrome prior to my first appointment. However, they still respected that I probably knew more than they did. How refreshing! Together we started working on solutions for the things I found impossible as well as the things that were just difficult.
Overall, I've been believed it every step of the way. Plus my quality of life is valued. At first this was hard because I started to wonder if I had underestimated how sick/impaired I am. To some extent I had, and the Activities of Daily Living assessment questions really made that clear. Overall, what was going on was that L. and A. were not expecting me to wait until something was 100% impossible to find new ways to do it. If I have trouble eating once a week then we need to find a solution so that I can eat all the time. Before this I just skip meals when my hands were bothering me too much. Also, they want me to be as independent as possible. Yes, Mr. Wacky will help me with almost anything but it would be nice if I could do things independently if I wanted to.
I'm even getting help to do hobbies such as console gaming and knitting. Previously, it has felt like I was expected to simply drop my hobbies no matter how much physical or emotional benefit I got from them.
In addition to tools like can openers and modified forks we've done some work with splinting and strengthening. Splints will help to hold my joints in proper alignment and will hopefully help reduce the frequency of subluxation and dislocation. Strengthening should also help my muscles compensate for my tendons and ligaments which should result in fewer subluxations and dislocations too. I didn't think that popping out my joints was bad per se. Apparently, it is. Each time I do it I'm damaging something be it cartilage, bone, muscle, tendon, or ligament. This just isn't good.
I wouldn't say that occupational therapy has been easy. However, it has been helpful and that's more than I can say about most medical appointments. I still have to educate my medical team about some things but I'm actually getting concrete help that that is improving my quality of life now and may slow my rate of decline.