Klippel-Trenaunay Syndrome

Hi, my name is janush. I'm curious about KTS

#MightyTogether

#KlippelTrenaunaySyndrome

Occasionally, I get asked: “Why is everyone so sensitive about language? What’s wrong with telling it as it is?”

I have a rather unpopular opinion. I think these people are right. They should say exactly what they think, as loud as they can, no matter the audience. They should use every word that comes to them, and say it without hesitation.

They should do that, so that I know to stay the hell away from them.

If you asked me to choose between hearing, “Oh, you’re so brave to live with a condition like that, I could never be as strong!” and “I would kill myself if I were you!” I would much prefer the latter. It tells me who to block, on social media and IRL. As a person with a rare illness, and someone who deals with an anxiety disorder, it’s easier to deal in absolutes than in passive-aggressive non-compliments.

People can, and should, say what they want. What they cannot control are other people’s reactions to them. Those are ours and ours alone.

Few things are as frustrating as investing in a friendship, or more, with someone who does a complete 180 as soon as they learn about my disease. I make a policy of honesty and disclosure early on: “Hey, I have KlippelTrenaunaySyndrome, this is what this means!” Why? Because it’s a part of me, and because I need to make sure the person I’m talking to is safe.

You can tell a lot from someone’s language. You can tell even more from their response to being corrected.

Some of my best friends and my closest relationships are with people who just accepted what I said to them. Who respected my boundaries without trying to push. Who rook my pain in stride, made me feel better when I felt like I was missing out, and cheered me on when I was genuinely happy.

Some of my shortest relationships have been with those who tell me to “get over myself” and that “I would never be you.”

But people didn’t used to get so upset about words! you may say. That’s true.

People also used to put lead in paint and think it was a good idea. We know better now, and we are working actively to minimise vulnerable people’s exposure to lead. We may not have eradicated it completely, but we are good at signposting it and warning others to stay away.

I feel the same about language.

Just because it’s hard doesn’t mean it’s not worth trying. #RareDisease #KlippelTrenaunaySyndrome #KlippelTrenaunaySyndrome

I could use some encouragement. I don't have a single organ system that functions properly. It's so physically difficult to take care of basic needs. Just going grocery shopping or doing laundry is a huge accomplishment. I don't have a strong social support system; I grew up with an abusive family, and I was in a relationship last year that worsened my mental health issues alienated my close friends. I'm living in poverty and statistically likely always to be in that situation. About to lose my health, dental, and vision coverage in a couple of weeks, all of which I desperately need. I love working and I want to contribute positively to society. I just need a lot of accommodations in order for that to be possible. Sometimes I feel so hopeless. I don't want to die, but I genuinely just don't know how to live this way.  #CheerMeOn  #BorderlinePersonalityDisorder  #Depression  #Anxiety     #Fibromyalgia  #GastroesophagealRefluxDisease  #IrritableBowelSyndromeIBS  #Migraine  #DegenerativeDiscDisease  #Arthritis  #SleepApnea  #Asthma  #Osteoporosis  #ComplexRegionalPainSyndrome  #KlippelTrenaunaySyndrome  #LymeDisease  #Eczema
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