She Is Struggling with Turner Syndrome

Hello, Papa! 

To start off, I've always been different. Being a furry, a nerd, among many other traits, has not made me into the most relatable person. I'm just too weird.
 
But lately, I've been feeling more distant than usual from everyone. 
Last year has been very hard for me. I've been diagnosed with a genetic malfunction that changed everything about my life. Everything. I'm signing this letter anonymously and changing all the info (except age) to try and cover my tracks, because it’s hard for me to tell anyone about this unless there's hardly any way they can track it back.

So, time to come clean. The ... malfunction ... is called Turner Syndrome. Basically, imagine a girl that will NEVER go through puberty, and you have me. I can fake some things. I take a shot every night to increase my height, and take steps to make myself feel normal. I've gone through surgery after surgery (I HATE them. I once had such a panic attack before one, they couldn't put me under until I calmed. Don't know why.) I'll never have a child naturally, and my appearance is much less than pleasant. 

You can probably imagine the mixed emotions I'm feeling about this. I was on anti-depressants for a bit (at 14 years old!), grades took a hit, and life just felt pointless. My self-esteem is non-existent. I can't be left alone with my thoughts. 

My question pretty much is.... Where do I go? How do I pick myself up from this hole I've dug? I don't know what to believe in. I rejected religion for science, but now science has told me I'm stupid, ugly, short, awkward, and infertile. 

A furry I'm VERY close to noticed the shot in the fridge and asked me about it. I told her nothing more than, "I take a shot every night to grow." She's shown me nothing but support, but I feel hollow, unloved, and slightly misunderstood. 

Sadness isn't the only emotion brought on by this. Anger came with the package. I stopped using furry social media because I couldn't stand to listen to the melodrama, couldn't stand thinking about how much I would give to be able to whine about a troll being a bully online. No, I'm stuck with this. 

So now I'm a shell of who I am. Bitter towards my peers and myself. 
What do I do? I feel so different. I feel so exiled. I'm 1/200000 at this point, just with two of my qualities. What do I believe in when the truth's turning me into someone I don't want to believe? Please, help. I can't help myself anymore. I'm the laughing stalk of the Internet because I'm a furry and a nerd, and the laughing stalk of real life because I'm short and ugly. 
Please. 
Help.

Sorry for talking your ear off. 
Your exiled furry, Anon. (age 16, Virginia)

* * *

Dear Furiend,

My turn to talk your ear off :-) (and you didn’t).

Thank you for your willingness to share your letter with my readers. That takes some courage, even if you sign yourself as “Anon.” Just so I have this straight, I believe that Turner Syndrome is a genetic condition that occurs only in women and has to do with one of their X chromosomes either being missing or incomplete. Interestingly, this is not an inherited disease but occurs by accident and is very rare. You mention short stature, infertility, and you say you’re “stupid.” The research I did said that women with TS have normal intelligence, but because they have some problems with spatial concepts they can have trouble with math. Other symptoms may include (but don’t necessarily include) heart, kidney, liver, and thyroid issues; hearing loss and ear infections; scoliosis and other skeletal problems, including loss of bone density; and such physical anomalies as puffy extremities, numerous moles, low-set ears, webbed neck, receding jaw, and short stature (as you mentioned). I assume the surgeries you mention were related to these physical traits and hope you have no internal organ issues. In addition, shyness and social anxiety is often heightened among those with TS.

Okay, that’s the technical stuff (mostly for the benefit of my readers, as I’m sure you know this). Let’s address some of these issues.

• You are not “stupid.” Your disease might cause some limitations in some academic areas, but TS patients are, in general, of normal intelligence. As evidence, I cite your letter, which was very intelligently written.
• You are not “ugly,” you are aesthetically unconventional :-) Sweetie, it is a very stark truism that “beauty is in the eye of the beholder.” And there is someone out there who will be attracted to you—physically and spiritually. Just look at furries, fur instance. We’re attracted to strange creatures that most people would think are “ugly,” but we find beautiful. Frankly, when it comes to conventional notions of beauty, I find models and beauty queens rather redundant and boring. Embrace your uniqueness and don’t let others define you. Beauty—sorry for another cliché—does come from within.
• I don’t know why you are rejecting science. Science is your best hope! Things might be a little slow because your genetic disorder is rare and so there might not be as much research money as for, say, cancer studies, but medical science is making great strides in gene and hormone therapy that could benefit you. It is because of science that you have shots to help you grow, and it is very possible that, in the future, there will be stem cell therapies that can help in other areas. As for the surgeries, I certainly can understand why you would hate them. No one likes to be in a hospital, and surgery can be painful (I’ve had a couple myself). But, have they helped? I must assume they did or else why go back for more? Hopefully, you are done or nearly done with surgeries. Don’t give up on science just yet.
• While having a baby is less likely in TS patients, it is actually possible (but contraindicated in those TS patients who also have cardiac problems). A lot can be done with hormone therapy to help in this area; ask your doctor, and if your doctor isn’t helping, you might want to seek another opinion. I suppose it depends on how profound your TS is, and I’m not qualified to gauge that, but my reading on the subject says there might be hope. Furthermore, if you wish to be a mom someday but can’t have children of your own, don’t short change adoption, which can be as rewarding and loving as being a biological parent.
• As for religion, I can understand your attitude there, as well. Although I suspect that you are not rejecting religion because you see it as a way for an elite, priestly class to take advantage of people’s faith, but, rather, because you are bitter and are rejecting the idea of a kind and loving God. A lot of people feel this way. It’s the old “how can God be good and allow so much suffering?” The pat answer to this is that suffering is a result of God allowing us to have free will and, therefore, people often do bad things. But that doesn’t explain things like illness and natural disasters. The truth is we live in an imperfect world and pretty much everyone suffers from something. That doesn’t mean God doesn’t exist; it just means that God isn’t what most people expect, and, really, who are we to judge God? We have no clue about God’s true nature.

You mention the bickering of furries online, trolls and such, and how that irritated you and seemed trivial compared to what you are enduring. Well, yes, perhaps, but in writing my column I find that much of that petty fighting is the result of more serious issues in those people’s lives.

This is not to make light of your illness, which is certainly serious. But what can be done?

To begin with, stop blaming—or feeling let down by—science, medicine, God, etc. Also, and most importantly, don’t blame yourself. You have been dealt a bad hand at the poker table, but the talented card player knows that bluffing can win the game—and by bluffing, what I mean is attitude. Take two people with Turner Syndrome: one is very negative, bitter, angry, hopeless; the other has the same symptoms as the first, but she is upbeat, hopeful, and active in her life. Even if neither one gets better, which one is going to have a better life? Will attitude cure your disease? No, but it will change who you are. Right now, you acknowledge that you have dug yourself into a hole, and the shovel you have used is called bad attitude. How do you get a better attitude? You find community support in people who understand. I would like you to contact the Turner Syndrome Society of the United States (http://www.turnersyndrome.org/). Their website has all kinds of resources, including two support groups in your home state and a reference to a doctor in your state who specializes in TS. Getting help from people who care about and understand you is a huge step toward digging yourself out of your black hole.

I want to also suggest you take a look at this page http://tinybuddha.com/blog/8-tips-to-help-create-a-positive-mental-attitude/, which will give you some positive tips. Buddhism, remember, is not a religion, but, rather, a life-affirming philosophy. You could do a lot worse than studying the teachings of the Buddha. A point I want to especially emphasize in the link above is to realize that you are not your disease. You are not your pain or your emotions. You are something very much larger than all of that. Transcend the trappings of the mundane world and you will discover you are a part of a Universal Being. Studying Buddhism will help you to step outside yourself and realize the larger picture.

One more thing you can do: remember to hug. Hug your friend, hug your family, and tell them you love them every day. It works wonders.

Hope that helps!

HUGS!

Papabear