Finding Strength

Sometimes I feel like I am looking through a magnifying glass searching for strength to keep going. As of right now I am on break from college. I don’t start back until the 16th but I can already feel the dread of the cold and commuting weighing on my mind.

For me though finding strength to be what the world wants to see is often a battle of whether I can bear to be fake for the sake of others. Oftentimes when making friends in college I find myself being fake or distant towards others as to avoid pity or any of the cliche advice or sayings that come along with admitting that I was born with a genetic condition that won’t ever “get better soon”.

So a solution then? Well I have found that while using my magnifying glass I am able to see there are few people that can see right through me and know something is wrong. Like i am in pain or my hip hurts because of the pressure changes and rain coming in. I realized it is possible to be real and be understood by those who do not deal with such ailments as mine.

I made a friend this year that suffers from a genetic bone disease. Her and I discussed our pains, injuries, and everything. It’s an incredible feeling when you find someone who..well, gets it! She helped me learned to be more trusting of others with my problems. While this is not a guarantee for every person you meet or make friends with. Sometimes people will surprise you when you give them the chance to prove it.

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I try not to be too much…

But sometimes I feel like I am. Like when people want to know me they might regret asking what’s wrong.

What’s wrong?

Everything.

I complain about my joints hurting like I am 50 years old. My knees, feet, hip, wrist, back,and neck. My depression and anxiety. Although that’s any age.

Wellyou asked what’s wrong.

People are what’s wrong. I recently had a group of college people I was friends with. Well not close. But like we hung out. Texted and the wanted to know me. Then rather than tell me they don’t want to be my friend. They get me alone and start telling me that because I’m introverted I am insecure. That they talked about me and came to the conclusion i am unhappy with my life. That I am apparently jealous of their boyfriends/significant other because they took me not joining in on their conversation as well me being jealous. Even though all I was doing was sitting on my phone relaxing. They told me I am not confident. The guy made an insinuation that I am a slut. That I need a boyfriend.

I ended up going to the bathroom crying for 10 minutes. It felt like forever.

Of course those people are no longer my friends for obvious reasons above.

You wanted to be my friend but rather than saying I’m too much you bully me and act like we are in middle school. You wanted to know me. The only regret on my part was thinking you deserved to know me.

Sidenote: I am doing better now. I still have classes with them. But I am not there to be friends or baby anyone. I am there to get my associates degree in early Childhood education to help kiddos.

To anyone else who is being bullied or has trouble making friends due to chronic pain. I am here. I will talk. You are not alone in this fight. We are ehlers danlos warriors.

Hello….is anyone out there?

I’m alive. I feel the oxygen coming into my body and the carbon dioxide leaving. But I’m alive. Or at least so they say. To be honest, sometimes I feel like I have cinder blocks tied to both my ankles in a swimming pool. So how is it a fair fight. I mean I am not physically rebuilt by these surgeons to carry all this physical and emotional weight. I mean, how Is it fair that I have to day after day pretend that my life is really okay? I mean, how do I tell someone I am not ok without having them say well others have it worse? I mean, how do I tell someone that I have a genetic condition that is not curable? I mean how to do I politely tell someone no I have never considered trying to meditate all my problems away? How do you say that your severe anxiety and depression won’t be cured by meditation? Truthfully, I just say thank you then walk away. But what I want to say is no I need medicine I do have severe anxiety and depression. So, then I get so lonely I start to feel that if a doctor won’t listen, then no one wants to hear my issues, my secrets, my despair, and my fears. I place them in these jars in my head neatly closed but tight together. Fearing the day, there’s no more space for my jars and they all come crashing and breaking down. Releasing the dark I’ve learned to hold inside of me because when you are told to “just meditate” and “you’ll be fine” the truth is you won’t. And the truth is I wasn’t.

I was there once. My depression was so bad that I was there. I never told anyone. The day was a normal school day. I woke up and I was crying all morning. I never did anything. But thinking it was enough to scar me. I eventually made it into school. I even did a presentation in front of people. Because I learned how to act like everything was okay even when I knew it wasn’t. Finally found a doctor who listened and gave me the medicine my brain needed to function properly.

That’s not to mention the part of how my family either didn’t care about my Ehlers Danlos or dismissed it.  I had to learn that while some don’t want to believe it or hear it doesn’t mean I don’t have people who will. I found my mom, sister, and my couple of friends. I used to be mad at these family members, but now I just learned that while they want to live like the world is rosy and butterflies I know that it can be a real bitch sometimes.  And while you dismiss it, I will not stop educating people and posting about it. And sharing what I have to live with day to day for the rest of my life.

 

When “feel better” makes you feel worse

I am appreciative of the idea that people have good intentions when saying “feel better” but do they realize I have a genetic disorder that won’t “get better”. I have friend and family who say it all time and again with good intention but with a lack of knowledge to recognize that my genetic disorder won’t ever heal itself or cure itself.

The impact of hearing “feel better” for me makes me feel shitty because I will never really feel better I will just learn how to better cope with my pain and life as a patient. My collagen is defective and will never eventually work so i’ll eventually “feel better”.

For me i’d rather hear ” i am here if you need to talk” or “i am thinking of you” or ” i don’t understand what you are going through but i know you are strong and will get through it.”

Can You Repeat that?

Often times when someone says something ignorant all I can think is “can you repeat that?”While I am aware that people feel the need to correct the person or say to me “well why didn’t you say…?” And usually it’s because I am in shock. I am shocked that we humans have become so ignorant and close minded that it’s not even worth responding to that person to educate them.

So why am I talking about this whole ignorant thing. Well i’m glad you asked. So the other day in my College English Class we talked about pet peeves and if you could kill someone over the smallest pet peeve what would it be? Well mine is hearing people chew but like who doesn’t like the sound of that. Then comes my professor he says if he could kill someone over the smallest pet peeve it’d be people who use handicap things that aren’t handicap. He said and I quote “Unless your in a wheelchair like the picture shows don’t use it.You may as well have lazy written all over your forehead.” Specifically he was talking about using handicap buttons on doors.

Now I know you’re probably like well why does this bother you? Well it bothers me because being a zebra and having an invisible illness I have found myself using them because of my recent wrist surgery and new finger/joint pain. Now I don’t use a wheelchair but to assume that someone who is using it is lazy is quite simply ignorant to the idea that you don’t have to be in a wheelchair to be handicapped or disabled or whatever. And yest I took it kind of personally because he let us go on a break and I stood at a the bathroom door debating whether to just open the door normally and risk immense finger pain or use the button and avoid it all together. I looked around kind of paranoid to see if anyone was going to say something then pressed it and snuck in. So what now I have to be in a wheelchair to prove myself.

So now you see I didn’t say anything in class because I was on the verge of crying.  I know many in the EDS community believe in educating others but my god if I did that I would be late to everything and never get anywhere.

I am working on telling myself now that I am allowed to use these things even if I am not in a wheelchair.

Hiya I’m alive. Doing well I guess but 

I am having a new manifestation of a symptom of Ehlers Danlos Sydrome. My saying I always say is “there’s always something”. I am having weird muscle spasms/twitching in my face and arm and legs. They aren’t painful but they seem to almost confuse me and make me forget what I am doing and where I am. I’m worried as thy are becoming more frequent happens 3 to 5 times a day. 

I feel worn out but I smile anyway

What no one told me about having Ehlers-Danlos Syndrome is that sometimes it’s easier to smile through your pain rather than try explaining what hurts or what’s bothering you.

No one told me that was going to wake up feeling like old person every day. No one told me that pain was going to be a part of my life for the rest of my life everyday.

No one told me I would have to lie about how I feel on a day to day basis because trying to explain how you’re feeling or why you’re feeling a way seems to come back and bite me in the ass.

No one told me that because I am young people who are older than me would pass judgement on me and my issues.

No one told me that I would have to constantly be on the lookout for places to sit because my joints can’t handle standing for longer than a certain period of time.