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… Limb length difference
In my experience, after my marks, the next most common aspect of CMTC that I have to explain is my limb length difference (LLD). It seems like an odd one to have to discuss again and again because, for me, the limb length difference is barely visible to the naked eye. However, this LLD does impact my life in visible ways.
The greatest impact for me is that my legs have around a 3 cm difference, which means I often walk with a limp, and that playing sports over the years the LLD in my legs did contribute to a few joint injuries. The result of limping for years means there has been some impact on my back and natural walking gait, so even if I wear lifts, it only helps so much. The difference in my legs is visible in girth as well, so I do sometimes have people comment on the fact that my leg looks swollen or ask if I have an injury. Like with any visible difference, people will feel the need to comment, but in this situation, I find it almost comical how almost every interaction leads the stranger to comment, “You have a limp.” While it can be frustrating having people point out the obvious over and over again, I have chosen to take the view that it is quite hilarious how that statement is often just blurted out by people.
I usually try to address people commenting on my limp, the same way I address my marks, explaining that I have a rare vascular condition that causes one leg to be shorter than the other. If they are someone that I don’t want to explain my condition to, I blame my knee injuries. Doctors are sometimes the individuals that struggle the most with this impact of my condition, as it is something that cannot be fixed, or repaired, so it is something they have to work around and account for in other care. An example is when I had my knees scoped to repair the damage done through basketball, my orthopedic surgeon expressed frustration that he couldn’t use measurements from one leg to calculate size for the other pre-injury. After going around in conversation for some time I finally suggested we may have to be creative in our measurements then and find another way. We did and it worked out wonderful, but it can be frustrating to force doctors to think and work outside the box when their usual methods fail.
Schoes: 2 sizes different
Additionally, my feet are about 2 shoe sizes different, so buying some shoes is just impossible without buying two pairs, and I often have to adapt the smaller shoes. Shoes that have many straps or have high heels often require me to buy 2 pairs for them to fit and not fall off. This, of course, can cause shoes to cost exponentially more than you want to pay, because of this, I often do not purchase expensive shoes, and if I do only on sale. The biggest hack I have discovered is to find a brand of shoes that works for you. For me, I buy Under Armour runners and then re-lace the front so I can tighten the toe box and heal through the lacing. Likewise, canvas shoes like Toms can be stretched so that you can buy one shoe and then stretch out the larger shoe. One of my favourite methods is to wear big socks in the shoes while working on the computer and move my feet around to stretch out the material. If the shoe is so tight I cannot get it on in that way, I use damp cloths and shove them into the toe box and then freeze them to expand the fabric. Once stretched I find these shoes last for quite some length of time so you don’t have to do it too often.
Hand and arm asymmetry
Likewise, my hand and arm are not symmetrical, this can mean in some medical situations if there is something wrong with my hand, wrist, or arm, they cannot use the other arm to compare to assess the severity of the injury. These interactions very rarely happen with members of the public or strangers; this is usually just in the medical realm for me. One example that has happened recently is that I sprained a finger and damaged my knuckle when the first aider at work looked at my hand and mentioned that the finger looked smaller than the other hand or at least similar. I then pointed out the fact that all the other fingers looked bigger on the non-injured hand and the difference in my wrist. I explained the fact my small hand looked the same as my large hand is a problem based on the other features of my arm. They finally understood this meant my joint was, in fact, very swollen. This involves significantly more advocacy when receiving any level of care than others may be required to go through.
Conclusion
Overall, LLD has an impact on my life, but it is something that gets commented on less than my marks. However, in a medical setting, I find it is less thoroughly understood in its relationship to vascular malformations. This means more work for doctors to come to terms with what this means and how to work with, or at least around, the challenges it provides. This is where self-advocacy is crucial and necessary to ensure that you are getting the care you need and that symptoms and signs are not missed just because they are confusing. I find it a critical aspect in my medical journey to be intimately familiar with my body, the exact measurements in LLD and the visual differences in girth and swelling that CMTC can cause; having these concrete facts helps ensure people listen to you and act on your facts, rather than simply trying to brush them aside as perceived flaws. It is a frustrating aspect of living with CMTC, especially in a medical setting, but the more information you have, the harder you are to ignore or dismiss.
