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How My Family Prepared Me for Life With Klippel-Trenaunay Syndrome

Recently, I was told, “Thank God you were blessed with a family who looked out for you.”

They were right. I didn’t fully appreciate this until I wrote on The Mighty, but as a person with Klippel-Trenaunay syndrome (KTS), I have been twice blessed: once, to have the family that I do, and once again, when I was able to access specialist help at an early age.

Not everyone is so lucky.

I love my family, and I know they sometimes struggle with doubt about me. Did they do everything they could? Could there have been anything — so many years ago, when I was still a baby — that they could have done to ease my load? I constantly put these questions to myself when I wonder if I am managing my KTS in the best way possible. I can only imagine how it feels for them and for other parents in similar positions.

I feel like I can say this, though: They did a bloody good job. A lot of the stuff I am as an adult — assertive, critical, (mostly) level-headed — is because of them and how they taught me to cope with my condition. And maybe this list is not practical for everyone, but it is what made the biggest difference to me.

1. They taught me to advocate for myself.

Spending my childhood in and out of hospitals (for KTS, but also for various childhood ailments like tonsillitis and chicken pox) meant I was constantly around doctors — aka, the people who know everything about illness and nothing about the patients. (I only tease because I love them.) I watched how my parents interacted with doctors, and I learned from them. I saw how they worked with the ones who showed them respect; I also saw how they dealt with the ones who were full of shit. I can’t say I’m perfect, but I had great examples to learn from.

2. They were firm about managing the condition.

I did not like the compression garments I had to wear at first. They were — oh, so many years ago — bulky, hot, and very uncomfortable, not to mention a pain to keep up. Did that mean I didn’t wear them when I felt like it? Absolutely not. Like many things in life, KTS means a lot of unglamorous things have to be done to manage it. The good news, though? After a while, I stopped noticing the discomfort. It became routine.

3. They let me make some mistakes.

What happens if I don’t wear my compression garments? Well, my family let me find out one summer. If you experienced lymphoedema, you will not it’s not pleasant. You will know management takes constant effort and that if you let it go by the wayside, it’s much harder to get it back to the level it was when it was constant. Well… as a child, I did not know these things. I learned them the hard way. My family, mercifully, did not say, “I told you so.”

4. They tried to give me good self-care habits.

Swimming is known to help the lymphoedema. It also happens to be a sport my family appreciated, so I got to learn how to swim. My family also tried to teach me to eat a balanced diet, to cook for myself where possible, to eat fruit and vegetables… and also that it’s OK to have donuts and takeaway if you feel like it or if you’re so knackered from working 10 million jobs that you are literally falling asleep on the bus.

5. They tried to help me love my body.

Listen, it’s easy to be frustrated sometimes. We’re surrounded by glossy, airbrushed images of perfection (even in the 90s. Even in the Balkans. Wrap your minds around that for a second.). It’s so easy to look at yourself and see what’s “wrong” — the hypertrophy, the lymphoedema, the bits where the skin has gotten bad. It doesn’t help to be surrounded by assholes who constantly tell you that you’re an “ugly c**t” or a “f*****ng s**t,” or who profess love only to reveal it was part of a cruel prank. My family tried to counterbalance that — teaching me it’s OKto like fashion, to express myself how I liked, to wear shoes that were nice, instead of just… flashy. Being told you are valid and beautiful was, back then, rare. In many places, it still is.

6. They taught me critical thinking.

One of the most horrible experiences I have had in a doctor’s office was to see him turn to my mother, after examining me, and telling her he could have “fixed me” if she brought me to him as a child. He was, of course, full of shit — both my mother and I knew it, but we reinforced that for each other as we left because it is hard sometimes. There is so much snake oil out there, and sometimes it’s hard to tell what is really a hopeful development and what is not. My family, though, taught me to pay attention. To seek out the practitioners who discussed “my best interest” instead of “their superior therapy.” To evaluate how realistic a claim was against the years I have living with my body and the facts I know are true about it. To be hopeful, but not to naively accept something that looks too good to be true. I’m pretty sure it’s saved my life a few times.

7. They taught me not to Google anything.

I said this before, but it bears repeating: KTS is rare. Thus, first-person testimonials (like this one) are not always very helpful, even if more than one person experiences KTS in exactly the same way as I do. I’m pretty sure the one time I looked up my own condition I ended up down a rabbit hole, but it was stuff I could not unsee. Thankfully, my family managed to talk me down from an anxiety I had worked myself into, but it was a lesson hard-earned.

8. They believed me.

When something was wrong, they believed me.

When I was struggling, they believed me.

When I was freaking out about something completely innocent, and that could have been nothing, they believed me.

When I had symptoms on the train, on my way to a job interview, they believed me and talked me through what I needed to do to get to the ER, and then came to sit with me, the whole time, until I was well enough to walk again.

When I told them I felt down because of being different… because I don’t see myself reflected anywhere… because I only have myself to go on… they believed me.

And they told me, in so many words, that other people’s opinions don’t matter.

Photo by Shelby Deeter on Unsplash

Originally published: October 4, 2018
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