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To the Doctors That Failed Me and to the Ones That Saved Me

Dear Doctors,

I came to you as a scared, vulnerable teenager. I was in pain and tired all the damn time.

“You’re depressed”, you said.

I walked out with a script for antidepressants. I hoped this would fix everything.

No such luck. I am a zombie. I didn’t care about anything. My friends are scared for me.

Months later I return with the same complaint. My joints hurt. I’m still tired. A new symptom arose. Chest pain.

“You’re stressed”, you said.

“I don’t feel stressed”, I responded.

“Subconscious stress,” you said.

I walk out with another script for a different antidepressant and sleeping pills.

This goes on for years.

It’s all in my head, you said. That the “physical symptoms were a manifestation of something psychological”.

Those words made me genuinely depressed. I wasn’t being listened to. The weight piled on, intensifying my depression. I didn’t feel like this body was mine.

You didn’t listen.

I became pregnant and things escalated.

“It’s just the pregnancy”, you said.

I moved clinics to find a doctor who would really listen to me.

Once again, I explain the pain, the fatigue, the stomach issues, the dizziness, my heart racing and pounding in my chest.

I came to you as a scared, vulnerable mother. I was in pain and tired all the damn time.

You’re depressed”, you said.

I walk out with yet another script for another antidepressant. The fifth medication of its type that I’ve tried.

I am in too much pain and too tired to function. I can’t muster the energy to get dressed. My friends and family don’t understand. Being judged for being in my pajamas all day. I am just lazy.

I think:

“If this is all in my head, and nothing is working, what is the point in living?”

There were days I looked at my pills and thought that if I took them all, that the pain would end, that I would be free and I would no longer be a burden on my family.

I fight the urge and win.

Three years later, while just about managing an internship, I interview a woman with Ehlers Danlos Syndrome. Her story sticks with me. The doctors didn’t believe her either. Nor were they willing to help.

A year later I speak to this woman again. We get to talking about my issues.

She asks one thing that changed my life forever.

“Are you hypermobile?”, she asks.

“No”, I say.

“I’m stiff as a board!”, I exclaim.

Turns out I am. Very hypermobile. I score 8/9 on the Beighton scale.

The woman gives me the same of a doctor to see. I decided to see what you, my doctors thought.

“Could it be Ehlers Danlos Syndrome?”, I ask.

“Oh God, no! That’s as rare as hen’s teeth,” you say.

I leave, defeated.

One November day, I faint at home. That’s it. I need answers.

I go to see the recommended doctor. My stomach is in knots. That’s normal before I go and see doctors of any type now. I prepare myself to be told the same old thing. That I was depressed, I was anxious, that it was all in my head.

I am examined, I am spoken to with respect, I do not feel like a neurotic child.

“No wonder you have been depressed. Nobody was listening to you”, he says.

Just as I thought; I was diagnosed with Ehlers Danlos Syndrome.

For the first time in my life, a doctor really listened, like no other doctors had done before.

Tears stream down my freckled cheeks with relief.

I walk out, cigarette in my hand, shaking with relief and with disbelief.

Finally! I was listened to. Finally, I have my answers.

A letter is sent to you, confirming my suspicions.

Nothing changes though, I suspect you don’t believe the diagnosis.

I never took another antidepressant after that day.

It was all over, or so I thought.

Then I soon realised, the diagnosis meant nothing without someone to help.

And here I am, six years later. I am bouncing from consultant to consultant. Medicated up to my eyeballs. No real investigations are done and some tests are simply not available in my own country.

Doctors often tell patients it is all in their head. Telling someone this can be as lethal as a bullet.

To England, I go with family in tow. My two children now facing the same life of disbelief and pain.

But things are different here.

I meet you, dear doctor, for the first time.

You are small and sweet. You’re gentle and kind.

I feel safe with you. You are thorough.

I had no choice but to travel and spend money we did not have, but I am glad I did.

You really listened and didn’t brush me or my feelings aside.

So many from my country have been here before. Desperate for help.

A world expert’s diagnosis, that will shut the rest of them up.

And it did. No more questioning on whether this was the real diagnosis.

I had wondered myself if the diagnosis was correct because all the others, these “experts” made me feel that way.

I return home. The rain pours as we land. It matches my mood.

I am coming back to a country that does not care about my well-being or my children’s.

I jump to another doctor after another again. And again, questions the diagnosis. I am so sick of doctors at this point. But, this next one is different.

You really seem to care.

There is no rush, you have taken the time to listen.

You follow my lead, you let me take the reins on my treatment.

I almost jumped for joy leaving the doctor’s office. I could not believe my luck.

You seemed determined to help.

My pain worsens. I am a ball of tears every time I see you now because I am at the end of my tether. Other doctors want to try these expensive treatments that may not work. They haven’t worked before. I just want relief from the pain.

I just wanted you to tell me you’ll help.

Yet I walk out with a script for antidepressants-again.

The memories flood back, of not being believed. I am now a nervous wreck going to any doctor again.

I take the first pill. It begins again.

I can’t get out of bed, I am more tired than ever.

Zombified again.

Sleeping for three days after taking one of those tiny pills so I don’t take anymore.

I return to you, scared because the pain is as bad as it’s ever been.

Feeling like the tin man, I just need some oil to move with ease.

“Anti-inflammatories will help”, you say.

I take the script, skeptical.

It’s still early days but I just know this isn’t going to work.

Something is very wrong with me.

I can’t keep fighting for help, doctor. I am already too tired.

Is it so much to ask to just want to be normal? To be like my friends.

There is only so much I can do on my own.

I am trying, really, I am to be normal.

Distracting myself with things that I can do.

I just want help with the things I can’t manage alone.

Is not living in pain too much to ask for?

Sincerely,

Someone who just needs help.

 

 

 

 

 

 

 

Thank You, Chester.

This week has been really tough for me.

On Thursday night I heard the news and broke down. A friend or a family member didn’t die. One of my saviours did.

Many moons ago, I was an angry teenager. I was angry at myself and at the world. As an adopted person, you ask so many questions. Why me? Why wasn’t I good enough to keep? In addition to the pain of abandonment, I always felt different. Something was never quite right. I couldn’t do things other people could. My frustrations came out as anger.

I felt alone and out of place, no matter who I was with.

At 16 I was on a path of self destruction, everyone was out to get me, or so I believed. The world was a crappy place and I was just surviving in it. I felt no one really cared and ignored the pain I was going through. Maybe they just didn’t see it. I don’t know.

I am not a creative person, I am not spectacular in anyway, I’m not talented at many things. I couldn’t throw myself into something to escape the pain.

I cut myself, I drank and I did things that were not good for me. Why wasn’t life as easy for me as it was for others, I thought to myself.

In 2000, I was just 13 years old. I was into all kinds of music. Nothing really spoke to me yet. That’s when I fell in love with rock and metal. Hybrid Theory was nothing I had ever heard. I began listening to Metallica, Smashing Pumpkins, Nirvana. I had been previously exposed to their music as a child but now, I appreciated it. Your music led me to some of those most amazing music that has ever graced the world.

But three years later when my pain was increasing (both physically and mentally), Linkin Park was the band I turned to. Hybrid Theory has been one of my all time favourite albums but it was Meteora that sang to me. In particular the songs ‘Somewhere I belong’ and ‘Numb’.

“I wanna feel what I’ve wanted all along, somewhere I belong.”

It’s as though you felt all the things I felt. For the first time in my life, someone was saying all the things I didn’t have the ability to put into words.

That song was on a loop, at full volume for months on end.

When I felt like dying, it was your music that calmed me. You were one of the reasons for pulling me out of that state. Seeing you play in the RDS while supporting Metallica was one of best days of my life. So not only did your music save me, you gave me great memories.

Now? Yeah, I still feel different, unspectacular and angry at the world but now I know that no matter what, music will always be there to pull me back as well the people who get me. I wouldn’t have known that if it was for your voice.

Even now, when my mental health is suffering, I know that even though you’re gone, you’ll still be there to sing what I’m feeling. Right now ‘Heavy’ is my go to song. I can’t help but cry when I listen to it, knowing how things ended.

So thank you Chester for giving us 17 years of your voice. Thank you for making us feel less alone. Thank you for putting into words the things I’ve always thought but couldn’t say. Thank you for creating music that speaks to millions of people who have felt the way I have felt. I have seen posts and talked to many people who were going through terrible times as teenagers. Even in the same school, none of us knew we were all going through stuff and all had the same thoughts and feelings. It just goes to show, you never know what goes on in people’s heads-even if you are in the same room.

I hope, wherever you are, you are at peace. Thank You again, for pulling me back. Your legacy will continue and I hope one day, my own children will find solace in your music when they’re feeling low, if they should feel unable to speak their minds aloud.

Forever Grateful,

Z.M

x

 

 

A letter to my children

 

To my little darlings,

I am here watching you both sleep. It’s 5.06am and I’m awake because I’m in pain. It’s peaceful here with only the sound of you breathing, the cat purring at your feet and the tapping of my fragile fingers on the keyboard.  As I watch over you both, I think of all the things I wish and hope for you and your futures.

I wish that medical professionals will believe you when you tell them there is something wrong. I wish that when you tell your teachers you’re not feeling well, that you will be believed. I wish that when you tell me and your Daddy that you need help, that we can do that and to the best of our ability.

I hope that as you grow up, that we can do everything in our power to prevent you from experiencing the type of pain and anguish that I go through almost every day. I hope that I can be a good enough mom for you both. Most of all, I hope that you won’t grow up to hate me because I was too sick to play or get up out of bed. I hope that you will understand that I didn’t get up out of bed because I was saving my energy to do something fun with you another day.

I pray that you will grow up and live a normal life. I pray you will get the best education, in life and in academia. I pray you will find a job you love but never feel like it is work. I pray you find love, with man or woman and they will accept you with all your flaws and imperfections. I pray that you appreciate them, as I have appreciated your father for loving me, despite the difficult days. I pray they treat you the way your father has so graciously treated me.

slleping zeebra

 

I know that should you experience any of the obstacles that I have faced, you will be far more equipped to deal with them than I ever was. I know you will be strong and determined as you have been in everything you do so far. I know that you will have days where life is just too damn hard, that there seems to be no end to the uphill battle but you will continue on. I know that when you should decide to become parents yourselves that you will know this guilt that I feel now, knowing that it was you who passed on these faulty genes. But, please remember; this is not your fault. You cannot control your genes as I could not control mine.

You begin to stir next to me now. No doubt you are looking for what you affectionately call “mama” as you nuzzle at my chest. And you, my love, at the end of the bed sighing in your sleep as if your dreams are giving you relief.

I want you to know that I love you, deeply and unconditionally. I hope that you know that I’m trying everyday to be the best mom I can and I pray that you will live a healthy, happy life.

All my love,

Mum.