Tag Archives: doctors

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.

 

 

 

 

 

 

 

The Medication Cycle: When You have a Chronic Illness

I came up with this medication cycle idea after I started some new meds recently. Annoyingly, the amount of meds I need to take to keep my body functioning is rising. You might hear from people who are not chronically ill that you’re taking too many medications. There might be something about big pharma in there too. Cue eye roll*  What they fail to realise is that without these medications, you can’t sleep, you can’t eat, you can’t get out of bed etc. The list goes on. It is not unusual for a person with a chronic illness to have multiple illnesses or dysfunctions.

This week I decided to do a tongue-in-cheek blog post. I know some of the posts have been heavy of recently. However, these posts are so necessary. But, I promise I will continue to mix things up. I know that the experiences below may not apply to everyone. I have based this cycle on what I and a lot of my spoonie friends experience.
Day One medication cycle

The New Medication

You go to see your GP with some weird symptom. You’ve probably been dealing with this issue for a while but it’s been put on the back burner while you deal with other debilitating symptoms.

You walk out of the doctor’s office with a prescription and you feel relieved that you’ve been taken seriously. It might be weird to healthy people but sometimes the idea of a new medication offering relief from symptoms can actually be exciting. 

This is going to the medication that changes my life, you think. This is the one. You’ve probably said this 20 times before but this time, it’s going to work. Your life is going to change for the better. You’ll be able to work again. You’ll have a social life. Basically, you have unrealistic expectations about this medication. You are the kid skipping home from the toy shop, eager to tear open the packaging.

Day Two medication cycle

The Waiting Game

It’s not working. That’s it, your hopes and dreams are crushed. Your doctor did warn you that it might take a while for the meds to work but nope, they are just not working at all. You’re frustrated. You throw yourself on the bed in despair, like some Disney Princess who has been locked in a tower.

Day 7 medication cycle

The Side Effects

You start to notice the original symptoms are not causing you much trouble now but God damn it, you’re starting to experience some new symptoms. Alternatively, your symptoms have become much worse. You take out the perfectly folded leaflet that seems to go on forever. You eventually find the section in your language and the list of side effects is as long as your arm. But, there it is in tiny black writing, the symptoms you’re trying to treat are also side effects of this new medication.

The medication is used to treat dizziness and yet the front warning says “Warning: may cause dizziness”. Like, WTF?

or

You develop a whole new host of symptoms. The medication that was prescribed to treat your overactive bladder is now causing insomnia and constipation. That’s right, first, you can’t stop running to the bathroom and now you’re lying awake thinking about all the times you could poop with ease.

The. Weight. Gain. Don’t even talk to me about the weight gain. As disabled people with chronic illnesses, it’s fair to say we don’t get out much so you won’t exactly find us hitting the gym five days a week. But also, we may not eat a whole pile of food thanks to some other medication you’re on or illness. Yet, you’re bigger than when you were in college eating 16-inch pizzas by yourself after a night of beer.

For once, I would like a medication that says “Warning: may cause extreme awesomeness”. You know, you wake up with the body of an Olympic swimmer, with a voice like Beyoncé and the baking skills of Mary Berry.
Day 14 medication cycle

Back to the Doctor

 

That’s it, you got to go to your doctor and sort this all out but, you’re so tired from not being able to sleep and you’re in too much pain from not having pooped for a week that the very idea of getting up, washed and dressed is the equivalent of a “normal” person running a full marathon. “Be graaaaannnnnddd”, you say. I’ll survive another day.Day 17 medication cycle

Back to Square One

It has taken you three whole days to work up the strength to get to the doctor’s office. You sit there in the waiting room anxiously. The memories of not being believed or your symptoms dismissed rise to the surface as they do after years of mistreatment (or rather no treatment at all).

You are finally called in and you sit there, waiting for the doctor to bring your file up and notice the new meds started the two weeks before. You explain that you’re having pretty crappy side effects from the news medications. This is when one of two things will happen.

  1. You’ll either be given a script for a new medication or

2.  You’ll be told that all this type of medication produce these side effects.

If it’s number one? Begin the cycle again. Two? You’re given new medications to treat the side effects and the cycle for those medications begin again.  Sometimes, you might be lucky and the new medications might just work.

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22 thoughts I had about my cervical check

January is Cervical Cancer Awareness Month. According to Cervical Check, during the 2013/2014 period, over 25,000 Irish women had a low-grade abnormality detected and over 5,421 women had a high-grade abnormality. Fifty-nine women were diagnosed with cervical cancer.

 I received a letter from Cervical Check after my daughter was born to remind me I was due a smear test. Here are a few of the thoughts I had during the whole process.

1.I can’t do this; I just had a tooth out. That’s enough invasiveness for one week I think. Yes. I’ll reschedule.

2.It’s been 8 years; I really need to do this. I’ve read so many stories about young women getting cervical cancer and wishing they had gone for their smears earlier. God, I really shouldn’t have let this go for so long.

3. Shower! Bad enough the nurse has to do this at all. Least I can do is shower.

4.Right. I’m here. Let’s get this done.

5. Maybe I should have tidied up? Nah, surely she won’t give two hoots. I’m not quite “70s chic,” just yet.

6.Why did I have to wear skinny jeans and Doc Martens? These are so awkward to get out of.

7. Goosebumps on my bum, how attractive. Bad enough this white derrière hasn’t seen a day of sunlight in years but, now it’s all chicken like.

8.This must be the worst part of this nurse’s job. How are all gynecologists not celibate? Would you not be sick of looking at it?

9.Oh that clamp thingy. We meet again. Yes, I remember you. I will accommodate you but only because it’s for my benefit.

10. No amount of lube is going to make this comfortable, lady. Went in without any issue though! Guess that was enough lube.

11. F**k! That’s cold. I didn’t remember how cold it was. Jaysus.

12.This hurts. Quite a lot. Maybe I still have that erosion on my cervix from when I was pregnant? What does that even mean? They never really explained that well at the hospital.

13. Make appointment with female GP about this. Surely it shouldn’t hurt this much.

14.Discharge? Yes. Isn’t that normal? Doesn’t everyone get that?

15. Phew, it’s out. Thank God for that. Don’t have to do that for another three years.

16. How long of a wait?! They are still sending them to America? We really need more resources here.

17. No, my period hasn’t returned. Go breastfeeding!

18. I wonder will that affect the results? Must Google that later.

19. I won’t leave it so long next time. God. That was quite stupid of me, leaving it this long. I would be killing my friends if they left it this long.

20. I wonder when my husband will start getting prostate checks? LOL-in my head. So. LOLIMH? I don’t know.

21. That wasn’t so bad after all. The dentist was so much worse. I feel like I should treat myself now. What’s an appropriate reward for a smear test? New knickers? Cake? Mmmmm cake

22.I’m hungry now. I wonder what’s there to eat at home.

For more information about smear tests, see www.cervicalcheck.ie