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 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… Eye Problems
I find vision problems and other eye issues are complex to explain in general, but even more so when relating to a vascular condition. People just asking about them often don’t have a lot of understanding about the complexity of the eye, and new doctors tend to either have a lot of information on the eye and very little on vascular conditions, or the opposite, or worse, little information on either. It is important to acknowledge that not all vascular conditions cause eye problems, and even those conditions that can, often cause them in specific circumstances. Additionally, eye problems are incredibly unique, so with that, as always, this is my experience that I hope can help lead to new or improved conversations with the public, your peers, or your doctor. It is always critical to have your eyes examined by trained physicians, ideally ones with some experience in vascular malformations.
When dealing with the public or peers, it’s always important to remember that you alone control the flow of information. If your vision problems are not something someone needs to know to support you, or you simply don’t feel comfortable sharing with them, then they don’t need to know anything about them. However, I have found that when dealing with missing vision, talking to people you trust at school and work can help make your days infinitely easier. The general public, on the other hand, I don’t tend to have in-depth conversations with, as unlike my marks, this is a fairly invisible issue to most people you interact with, and yes, the pun was intended.
I tend not to be able to see very well out of my left eye after I get laser surgery, so if my colleagues and classmates know about this, I tend to run into fewer people during the day as people adapt around me, stepping in before I run into objects or them. Also, just because I have let people know about vision issues I am having does not mean they need all the information regarding my condition. I tell some people I don’t trust as much, that I have had some surgery and am having vision issues, full stop; they don’t need the entire background on my condition. This nuance is what I mean when I discuss controlling the flow of information. You should never feel pressured to explain your whole condition when you decide to explain one detail to someone to make your life easier. They may only be entitled to that one fact, and they may have follow-up questions, but you decide if they need any more information than what you have provided. I find lines like “Thanks for understanding, I am not discussing any more details at this time” or “I still need some space to deal with other facts about my condition,” even if this is not strictly true, are both really good lines for ending those creeping questions if a simple no or body language isn’t working.
However, when dealing with doctors, it can get a little more complicated. The reality is that some doctors, you may not like or trust fully yet, still need the information for an accurate diagnosis, even if it is not necessarily clear why the information pertains to that doctor. The way I view most personal information for medical appointments is that I am going to get help, and if the doctors don’t have all the facts, I am doing myself a disservice by not giving my team the full breadth of symptoms, side effects, and severity of my condition. I will be the first to admit it’s easy to type and say these things, but in practice, it can be much more difficult, especially when trying to explain complexities to specialist doctors who may not even understand that vascular conditions can cause vision problems. Therefore, they may not take these symptoms seriously or write you off entirely, requiring you to constantly stand up for your lived experience; it’s exhausting, but often worth getting those notes and facts into your file. It may be another doctor who sees them later and acts on them, or as your relationship with the specialist grows, then vision care may move forward.
Another challenge comes from how medical care is divided in Canada; eye care is considered a secondary area of care, often under work benefits, rather than a part of the provincial health care system as a whole. This may not be the case for all countries, but it is certainly a challenge here and in a few other countries I have visited. Now, this is an oversimplification of the whole system, but in short, for my team, my ophthalmologist is considered a specialty; they can communicate directly with my GP and optometrist, but my optometrist is a siloed area of care and may not have access to my files or my GP and may not have the ability to contact them through the normal doctor to doctor means. This means that often information gets passed through a secondary source before being communicated to the rest of my team. It also means some specialists see eyes as something completely separate from the rest of the body, because it is taken care of by optometrists and ophthalmologists, and as such, is none of their business, which sometimes means aspects of your care are unconnected. My biggest challenge where this occurs is when my optometrist and ophthalmology team have no knowledge about recent laser surgery treatments, despite the laser surgeon getting pressure readings from the ophthalmologist from my GP. So, my laser surgeon is using ophthalmology records to make decisions, but my optometrist and ophthalmologist have no reciprocal information sharing. This means it’s up to me to provide that information to my eye team when I have my appointments with them, which sometimes leads to them having to adapt to this information during the appointment, rather than having the opportunity to be prepared prior to the appointment.
The reality of all of these challenges is that for eye care, and honestly, dental care as well, you may need to keep bringing it up to other doctors in your team, that it is a symptom or area in which care needs to be considered. This is exhausting, I won’t lie, but it is critical for your complete health, and as your doctors build confidence in their abilities to tackle your case and you begin working as a team, this will get easier and be less required of you. It is completely understandable to be frustrated that this takes time, but never forget you are your best advocate, so if something feels like it needs to be brought to the table, bring it to the table; don’t let the anxiety of repeating yourself lead to care falling through the cracks. This is an area where that can happen easily and often just based on the complexities of care in the system, so these are the moments you need to be the loudest and most persistent.
Like always, you know your body the best. You know when something needs to be brought to the table, so have faith in your knowledge and abilities.
