One of the most common questions I get is “How do you explain …”, which makes sense; anyone with a visible difference knows this is a frequent question. However, it can be complicated by the rarity of some of our vascular malformations. If someone is wearing an insulin pump, someone may ask what it is; however, the response of “an insulin pump for diabetes” tends to end the discussion, as diabetes is a fairly universally known entity. Answering that you have CMTC often leads to more questions rather than resolving the discussion. So, to multitask and additionally make some content for our upcoming project, my next few blogs are going to be a series on “How do you explain …” where I talk about how I address some of my visible differences and how I have grown in doing so.
How to explain… Fine motor disability
One aspect of my condition that took a while to accurately identify was the fine motor disability that affects my hands and wrists, specifically my right hand and wrist, which is both my dominant hand and the hand that had the vascular malformation. A huge part of this delay in diagnosis was just the lack of knowledge that this was even a possibility with CMTC. There has been an unbelievable increase in knowledge over the last 30 years, especially in the pediatric areas, so this struggle of getting diagnosed may no longer be as much of an odyssey, but when you have a rare symptom or side effect of an already rare condition, it can make getting supports and care difficult. So, how do we address getting care, explaining the condition to individuals and institutions you may need supports from, and how do you adapt?
The first step would be to determine if you have fine motor struggles. This sounds fairly easy, but it turned out to be a significant challenge for me. For the longest time, I just thought I was clumsy, as I tended to trip, fall, and drop things constantly, so I never thought anything of it. However, the key signs that evolved were trouble tying shoelaces; struggling to hold pens, pencils, scissors, etc.; and typing very slowly. A key symptom that led to the final diagnosis was the pain in my hand and wrist that writing, typing, and using scissors caused.
However, the path to diagnosis was delayed by the fact that I played volleyball, basketball and other sports that required good hand-eye coordination; so, many doctors were quick to assume a fine-motor disability was not possible. I was also doing quite well in school, so many teachers assumed that I was writing limited notes because I was understanding the material. However, I was only writing down what I considered the most important because that was all I had time to write during a lecture where I was struggling to keep up.
I was eventually unofficially diagnosed by one of our high school educational assistants, who recognized the signs while I was helping another student. She then started the protocols that led to an orthopedic assessment and documentation by the school board psychology department, which led to the official diagnosis. This diagnosis and the work with the occupational therapist (OT) made the transition into university significantly easier than it like would have been had I still been managing it on my own. I had supports put in place for additional time on tests, speech-to-text technology, computers that worked with my condition, and the ability to get notetaking services. Once this official document was in place, most institutions, such as schools and workplaces, simply wanted me to take that paperwork to my current doctor and then have the doctor complete that institution’s specific paperwork and submit the lot to the disability department. Overall, the biggest challenge I ever faced was getting the first official documentation in place, once you have a set from a doctor, an OT, a psychologist or equivalent. Every subsequent round of paperwork, for me, was just time-consuming to complete. Due to the challenges of that first round of documentation, I highly recommend trying to go through local school systems, as they seemed to have the most flexibility in my communities.
Talking to individuals
Talking to individuals about the disability is a little more nuanced; in institutions, there are often strict rules about what teachers, professors, etc. can ask or request from you. I only had to provide what information I felt comfortable sharing beyond the official papers. For classmates or just people you meet along the way, it’s slightly more complicated. Naturally, there is no visible indication that you have a fine motor disability, so you are unlikely to get asked direct questions about it, like the vascular marks. However, because the disability isn’t visible, if you need support from someone, it can require more advocacy from you as you step over the invisible disability threshold.
Additionally, it can feel like you are being silently judged for struggles with everyday things. I know I have experienced these feelings, for example, when it takes a while for me to tie my shoes, and it feels like a group is watching me and silently judging that we are still not ready to go. Likewise, it gets tiring hearing teachers and professors continue to talk about how strange I hold a pen or type. However, it is important to always remember generally speaking, people aren’t judging. There may be curiosity and concern, but most people are not cruel. It’s easy to feel self-conscious about struggling with skills that you feel you should have mastered, but everyone’s got their own unique challenges, and it’s okay to go at your own pace.
Adjustments and tools
If you are finding that this resonates with you and are looking for ways to adapt, here are a few of my favourite tools I use to make my life easier. The first, which is a huge help, is taking the laces out of all my running shoes and replacing them with triathlon laces so you can turn any shoes into slip-ons. This saves not only time, but also hand strength. I find I only have so much energy in my hands for tasks in a day, so if I can remove shoelaces, it actually does help extend my hands capabilities for the day. In the kitchen, I find I can really start to struggle with dexterity. Here, I find knives with wider grips and bigger handled scissors are easier to use for repetitive tasks. I also find doing groceries on days off when I have nothing else to do, then using that opportunity to prepare as much of the food as possible, so after a day of work when my hands hurt the most, I don’t need to prep the food as it’s already ready. Overall, any little changes you can make that allow you to feel your best despite any limitations are changes you should implement; nothing is a competition, life is about finding your own way to make things work for you.