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 … Laser surgery
I always feel like laser surgery is a bit of a loaded topic in vascular malformation spaces, first, it’s a big choice for a patient and family to start the journey, next is weighing the pros and cons that come with any major medical treatment, and then there is the social pressure that exists both to not look different, but also a real emerging social media pressure that you are supposed to “love yourself” and if you change yourself, obviously you didn’t “love yourself enough” whatever that all means. Because of this, I decided I was going to discuss the topic in two different ways: first, my experience deciding to go through with laser surgery and how that’s shaped the last 20 years and then how I actually deal with the everyday comments about it.
So welcome to part 2, where I will discuss how I actually deal with everyday comments from people, friends, and strangers about laser surgery. I know I have said this many times before, but you control the flow of information in all situations, yes with some doctors or medical professionals needs must that you will have to give more information, but you still control the flow of the information from your experience and with strangers you control the entire conversation, you decide what to share and when the conversation about your body and condition ends.
The first topic I am going to touch on is when people feel the need to comment on the marks left behind by laser surgery. For me, this will only ever be bruises and swelling on my face, as laser surgery is not financially viable on the rest of my body. Since it is so visible, I usually do not have people who are close to me or know me long-term feel the need to comment on the marks, as they see them appear every two months. When there is someone new at work or in my life, I generally explain to them that the marks on my face are from a laser treatment used to maintain my eyesight. This is simply pragmatism at this point. If they are going to be in my life for any length of time, it just simplifies all future conversations. Obviously, this is my approach and it isn’t universal, many people prefer to keep their medical information private, even with colleagues, which is understandable, from my reality though it is just too frequently visible and it means I am constantly addressing all the versions of “Are you okay?”, and “Oh no, what happened?” and I would rather just simplify the conversations down to “Oh another treatment? Hope you feel better soon.”
When the familiarity spectrum starts to slide towards stranger or acquaintance, that’s when I do adjust the conversation around the marks on my skin. Here again, I usually adjust my answers and information to the energy the individual is bringing to the conversation. If they are coming from a place of compassion, I usually brush off the concern with a, “Thanks for asking, it’s just a medical treatment.” Often, I will leave the conversation there and with a tone of finality in my voice, I let the other person know the conversation is now over. Often, these people may preface their comments by looking for information, like “did you fall off your bike,” or “get stung by a wasp?” Again, I stick to the information I am providing. Through practice, I know where my lines in the sand are; with time and practice, you will find yours too.
For individuals with whom I am less familiar, who come into the conversation with an attitude I don’t appreciate, like they feel entitled to my story or are demanding answers, they get the least acknowledgement. Here, “I don’t feel the need to discuss my medical care in public,” is a great response as it touches on privacy, medical care, and bodily autonomy without giving the speaker anywhere to go, no questions available to ask. If it is someone who continues to push, I like to turn the question around, “Would you care to disclose any personal medical facts to this conversation?”, or simply “It truly is none of your business,” to shut the conversation down fully. If possible, walking away also dramatically ends these conversations.
Now, the other aspect of laser surgery I wanted to touch on was when people feel the need to discuss not the marks left on your body, but about the type of medical treatment. I did touch on this last blog, but I wanted to give some more concrete examples and how to handle these conversations when you have already started treatments, versus when you are still in the decision-making phase, like last month’s blog. I want to preface this section by saying this is a rarer experience for me, but there are still enough interactions that go this way that I thought it was worth discussing. These conversations I find can happen more online with comments like, “don’t know why you felt the need to get cosmetic procedures done so young,” or “you should be more confident in your body.” These are tough to hear, especially if you have already struggled with the decision to get laser surgery. So, how do we approach this? First, if it is online, always know that you may be getting into a never-ending keyboard war, so I find I rarely engage. I just leave the trolls be. If you do want to engage, always err on the side of caution and give less information, especially no personal information.
When these interactions occur in person, there are definitely more compelling reasons to engage, in my view. This is where I feel judging your audience is critical; if they are someone who you think you can genuinely get through to, then having a conversation about the medical reasons or your personal reasons for making this decision can happen. However, if they are just someone who is looking to make you feel bad or make themselves feel superior in some ways, then, in my opinion, it’s not usually worth wasting the air on them. Informing them that your medical choices are your own and that many rare diseases have complexities well beyond the average considerations is often a good way to finish these conversations. I find this happens here, at least in Canada, as more and more conversations about using green light lasers for beauty treatments are entering the public domain, especially through social media. This does lead to people having a false confidence in their knowledge, and sometimes you do just have to dissuade them of that assumption regarding your experience.
Overall, I find conversations around laser marks are very similar to conversations around marks in general. However, they do have the added complication of people assuming they have more correct information than they do from poor sources. As well, it’s important to always be kind to yourself. You made a big decision to start laser, and then hard decisions every time you continue it, so the weight of the added burden you carry can make these conversations feel more fraught. That’s normal and a hard part of living with any rare disease. Remember to lean on your community and to hold onto your power that you control the conversations at all times.