One of the most common questions anyone ever asks 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 you have CMTC, often leads to more questions rather than resolving the discussion. So, to multi-task 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… marks
By far the most common questions and comments are about my marks, they range from concerned conversations to cruel comments, and it is an exhausting part of having CMTC. However, over two decades of a variety of interactions I have found a few ways to make these exchanges a little more tolerable.
This is where some very personal choices happen, you always enter these conversations in power and control. You decide how much, if any, to share, you decide when to stop the conversation, and you control the flow of information. This is so important to remember, any time someone asks or demands any information about your condition, you and only you get to decide how much information they get. No matter how much anyone pushes or insists, even if it’s a parent, guardian, or anyone else, you are discussing your body and your concerns, so it’s your conversation to control. Throughout this entire article always remember this, these are my experiences and my tools, but every interaction you have is yours to control.
The first step I take in any interaction is to stop and consider who is commenting. Is it a child? A medical professional? A colleague? A stranger? This is critical for multiple reasons, but the main two are it gives you a moment to pause and think, not simply react, and it helps you tailor your answer. Tailoring your answer helps you address: what are the capabilities of the other person in your conversation, and what emotion do you want to utilise?
A learning moment I had in my early twenties was that not every interaction needs to be an educational opportunity. It actually came from watching someone with an insulin pump simply reply “It’s an insulin pump for diabetes,” ending the discussion as diabetes is a fairly universally known entity. Whereas answering I have CMTC, often leads to more questions; I found there were simpler ways to resolve the discussion. When I was younger and more idealistic, I believed that every chance anyone engaged with my condition was a teachable moment and I had to give my everything and my all into every interaction and, honestly, it was exhausting. Realising that I didn’t have to educate every person I interacted with, especially people who had no intention of learning from me, was a welcome emotional and physical relief. Some people are simply energy sinks where they will never get the educational point you are trying to make and just drain your energy as you try and be the better person.
A few interactions are simple to decide how to approach. Generally speaking, I engage with children the same way in every interaction, it’s simplistic, it’s quick, and I try to keep the emotion fairly upbeat. For younger children, I usually stick to simplistic explanations like “They are marks I am born with like freckles” or “They are marks on my skin like my tattoos, but I was born with these.”. This basic level of information usually satisfies curious little minds and the conversation ends there. If the parents are getting overly upset or emotional about the child asking the question I usually assure them that curiosity is a part of childhood. I would prefer to have the questions from young kids, rather than hear a parent say, “We don’t look or point,” because in my opinion those comments just further the othering of people with visible differences.
On the other end of the spectrum, people who are clearly looking to be cruel or have no interest in engaging and just feel the need to point out differences to feel superior, are also treated to short simplistic answers, but often with very restrictive and emotionally distant answers. “I have a rare disease,” is my typical go-to when the person has been very rude. If the person continues to push one of my favourite replies is, “My medical information is not up for discussion in a public forum,” If I am feeling annoyed or sassy I sometimes add, “There are plenty of papers written on my case should you wish to do research,” this tends to derail most people who seem to need this reminder that looking different may be a medical situation, not a personal choice. Either way, it’s none of their business but pulling on that medical situation I find shuts down the conversation.
This is one of the types of individuals I discussed above who are energy sinks. No matter how much information you provide these people, they are not going to take it in, they are looking for the fight or the superiority. The only word of caution I hold here is to be wary of how quickly you push an interaction into this category. I have had more people than I can count where when I was so sure at the beginning of the person’s questions that they were one of these waste-no-time people, but after a couple of engaging questions realised that we were having a really good dialogue. So, you will find your way of gauging these interactions in the real world and you, absolutely, don’t owe any more energy than you are willing to give, but I try to remain optimistic and hold out some hope that even people I shove into this category may one day or through conversation become someone who isn’t a time sink.
All of the interactions in between are the harder ones. These are the conversations that require more nuance and interpretation. These are the sort of conversations and experiences that only time and practice will give you all the confidence to engage in your most comfortable space. The location of the conversations often sets the stage for me. I work in a public face profession, so many of my current interactions with strangers occur as I am working. This inherently limits the time of the interactions, here I often use lines like, “I have a rare condition called CMTC, where my blood vessels are visible in the first layer of skin.” If they have some level of medical knowledge, I usually reference that CMTC is a vascular malformation.
For conversations that are longer, then personal opinions and the relationship you have with the individual factor into the conversation. If it’s a conversation with a new medical professional, then more information is likely needed to be shared. These can be some of the hardest conversations in my opinion as the new medical professional needs enough information to make accurate diagnoses, but I find some doctors don’t respond well to being told huge amounts of medical knowledge by patients, and here is where psychology can play a huge role. Some doctors accept the information better if you can lead them to the conclusion you need them to make. An example of this is when I met a new haematologist who was not responding very well to me and so I changed tactics and demonstrated the vascular nature of the marks on my arm saying, “The birthmarks (as they insisted on calling them) can be pressed and then fill back in,” watching this they finally came to the correct conclusion, the birthmark is vascularly active.
These aren’t easy conversations, and honestly practice and learning what works for you is key, I found the best way to do this is to start having control of your appointments early. I started attending medical appointments where I was alone in the room at about the age of 11/12, but at this stage had a parent waiting in the waiting room so if they were needed, they were accessible. Then at 16-18 started having appointments entirely on my own. This set me up incredibly well to try different conversation strategies at a young age so that if it didn’t go well at least a parent could come in and try to re-explain the conversation and maybe get the appointment back on track. This gave me the flexibility to try different tactics. Then once I had a fairly set strategy, I was prepared to lead appointments and consults on my own.
Another common conversation is with a colleague or new classmate, however, if it’s someone you don’t feel close to, then maybe a more limited response is all they need. It’s all about finding the balance between what information you’re comfortable providing to that individual and the situation. Another factor that I find equally critical is how you feel that day; the reality is some days you are more interested in sharing and some days you just don’t have it in you, and that’s okay. As I mentioned at the top of this article you are in control of every aspect of these conversations, you alone control the flow of information.
To wrap up a long-winded discussion in short here is the best advice I have:
- Never forget you control the flow of information no one else.
- Practice different tactics and conversations so you have choices if one isn’t working.
- Lean on support people, friends, family, community, anyone, this journey isn’t easy.
- As early as you can start taking control of conversations with professionals, even if a family member is still in the room, it’s all about practice.
- You have got this; it can be a hard journey at times but you are stronger than you know.
