This is such a necessary part of spoonie life, but it definitely can be one of the worst parts. I am still learning the fine art of doctor-patient relationships but I will share with you what I know so far.
How to Work Effectively with Doctors as a Patient
Understand that doctors are people, too. Doctors are not miracle workers, usually. They are human, so remind them about your case if they forget and remember that they are (probably) doing their best.
Don’t expect too much. All doctors want their patients to have positive outcomes. It looks good for them if they’re helping their patients so they have a real motivation to give you the best care that they can. That being said, there is very rarely a magic potion to cure your ailments. They feel frustrated and disappointed when your treatment doesn’t work also. If you go in with lowish expectations you will have a better chance of being happily surprised, as harsh as that may sound.
Don’t quote things you read on the internet, unless it is a proper peer-reviewed article. This is a definite doctor pet peeve. It is good to research your symptoms and illnesses, but be wary of your sources. Scientific journals can be hard to understand but it is important that you find valid information before bringing it up to your doctor.
Be honest about everything. The good, the bad, the ugly. Some of our symptoms and side effects are pretty gross. Whether they be bowel issues or other unflattering situations, it is imperative that you share these and other concerns with your physician. They can’t help problems that they don’t know exist. Even things that you don’t think are important, tell them anyway. The more information the doctor has, the better the potential outcome.
Keep records of symptoms.
Doctors enjoy this. They need to know when the symptoms started, how severe they were, how long they lasted and what seemed to help them. These records help the doctor identify if they are side effects to medications or if they are a brand new symptom or a new condition altogether. Keep track of these things!
Be a patient patient.
This is something I’m still working on, as patience is a virtue I may have not inherited. I feel like I’m constantly waiting and always phoning and leaving messages for doctors. It becomes infuriating to say the least. That being said, try to not take your frustration out on the receptionist, nurse, or physician. It may not be their fault, and they will all appreciate your patience.
Kill them with kindness.
Going along with the patience, even when it may kill you, kill them with kindness. They will likely be much easier to deal with if you are pleasant with them. Remember that you have the power to change not only your day, but theirs as well. Change it for the good. You’ll never lose by being nice.
Thank them in writing. Writing a thank you card is always a good idea. If they helped you in a substantial way, it’s always nice to let them know you appreciated their treatment. It’s a classy move that may pay off in the future!
That’s what I have for today! Any other hints you think I should add?
Have a great day!
Today’s not your day.
You’re not going anywhere!
Sit down and stay right there!
You have brains in your head.
That much is true.
But brain fog makes you doubt your IQ.
You’re on your own. Yet you need assistance.
This may be quite a sad existence.
You’ll look at Facebook posts from friends,
And see how their fun never ends
Their lives seem full of choices and opportunity
While yours is filled with immune system mutiny.
And you may not find any common ground
With people you used to hang around
Your life has been changed from the norm
It is like being altered from your original form.
But not all change is worthy of despair,
Because you have gained new insights to share.
Perspectives are altered as illnesses progress,
Managing medications and appointments in excess.
These allow you to grow in ways you couldn’t have expected,
A new experience with every hospital band collected.
And then your heart grows and grows
With each new spoonie you get to know
Ask questions and share your tale,
Of illness woes and medical fails
THE THINGS YOU’LL GAIN!
You’re on your way to chronic success!
You now have medical aids and Netflix to obsess!
You’ll join the ranks of chronic warriors
who never turn down a fight!
You won’t always enjoy this life,
You’ll cry tears of pain, exhaustion and fear..
But know you’re not alone in this battle,
Whatever you are going through, we are here.
The things you’ll miss are plenty,
From parties, concerts, and plays.
It seems unfair because it is.
But this is the chronic fighter way.
It’s not always the most fun, that’s for sure.
But what we lack in fun, we make up for in heart.
Sheer will, determination, sense of humor, and hope for a cure!
My revamped version of Dr. Seuess’ “Oh The Places You’ll Go”
My name is Courtney and I ruin parties. I don’t do it intentionally. I don’t mean to draw attention to myself when I need to move because the pain shooting down my legs is unbearable. I don’t drop my cane on purpose so people feel sorry for me. Trust me, the pity is the absolute worst. I don’t leave early to be a buzz kill, and I certainly don’t avoid social gatherings because I’m a loner or a snob. My reality is just different than yours.
I don’t want to miss your wedding or baby shower, I would love to be there to celebrate these moments.
I don’t want to miss concerts or plays, these were my favourite things in the whole world.
The truth is that it kills me that I’m not able to attend places where my walker would be an inconvenience and I hate being the girl who has to call ahead to check for accessibility. The truth is that it’s embarrassing to constantly have to alter the room set-up for optimal comfort, and even then I have to leave earlier than everyone else due to pain, discomfort, or other health related reasons.
Chronic pain and illness makes me stick out like a sore thumb as I limp around and my eyes well up with tears. This does not feel like the girl I was meant to be, but it is the girl I am. I try to make the best out of every situation, but when awkward seating at a restaurant causes me to stand to finish my meal or my legs are squished during an outing with family, I am thrust back into the harsh reality of these illnesses.
I don’t want to rush people into finishing a meal they’re enjoying, or for people to feel bad as they see the discomfort on my face. This is my reality and as much as I try to hide it and make it not so, you are part of this reality also and for that I could not be more sorry.
So if I rsvp no to a future Facebook invite or a proper mailed invitation, I am not trying to be rude, I am trying to spare you and your guests from this reality. The reality of back cushions, leg lifts, mobility aids, and a rattling pill case full purse.
I wish I could be the fun loving chick I once was who could close down a bar like a whiskey shooting bad ass, but this is no longer something I am capable of. Now my resume boasts such goodies as “Netflix Aficionado,” “Pillow Setter Up Extraordinaire,” and “Snack Queen.” If you’re down with that, I’m here for you. In a couch, bed, or otherwise properly comfortable seating situation.
As (mostly) usual, check out the Song of the Week page for an awesome recommendation from a lovely spoonie friend!
Dear Friend, Acquaintance, Family Member, Random Person Staring at me with my Walker, or any other person who judges me without knowing anything about me and/or my condition/s and therefore should have no opinion on my medical situation,
This letter is for you.
I usually try to steer clear of you, as negativity is not permitted in my bubble of self care, but alas, you continually attempt to pop my beautiful pink bubble.
I used to think it was easy to avoid you and others like you, but as my medical conditions make it more challenging to survive without the need of mobility or accessibility aids in public and my life revolves around the illnesses more than anything else, we seem to be at an impasse.
I have several chronic, autoimmue, life-altering illnesses, whether you believe they’re real or not. And they are, just to be clear, as years of research and medical documentation support their existence (and I’m not on all of these medications for nothing). These conditions, illnesses, horrible-things-that-have-happened-to-me are in no way fake, misleading, or caused by anything I have done. I do not choose to be ill and miss out on work, bearing children, or vacations with my husband. I do not want to use a cane or walker around the house or in public (even if they are pretty cute), because in reality, it’s all a huge inconvenience. I do not want to spend hours on the phone arguing with insurance companies, employee benefits, or disability services. I don’t want to be in agony over the sound of birds chirping, motorcycles starting, or my husband trying to hug me. This is not a fun life. But it is my life.
This is my life, and it is not yours. And just because it does not make sense to you does not make it any less legitimate. These are illnesses I didn’t even know existed until they happened to me. But now that I know they do, I am a champion for these causes and for the people’s lives they’ve affected. I do not write this letter for your benefit or mine, I write it for theirs. I write this for my friends around the globe who encounter naysayers and hurtful doubters who make their already difficult lives that much harder. Nobody chooses to live in pain, but you are actively choosing to be ignorant to it.
I’ve heard you say things like “just push through it,” or “why are you in bed still?” or “if you just keep moving,” or one of my all time favourites “if you just take this one supplement your life will be completely different” which shows me just how little you know about our illnesses. And if you know that little about them, you are in no position to comment on how we survive them. If you think that one lap around the dog park is not enough to wear us out for days, you have no idea what we’re dealing with.
I’m sorry if this is coming off harsher than I had intended, but enough is enough. If you cannot stick by us, support us, encourage us, and just generally try to understand what we’re going through, then we’re going to have to cut ties here.
Speaking for myself, I cannot push through these exchanges anymore. I am begging for compassion, and if you are unable to provide that, there is nothing left to say.
Thank you, our friends and family who have shown us unending support and love. It means more to us than we can say.
Today’s Song of the Week totally changed my attitude and mindset for the day! As I’ve mentioned before, Rob Thomas (the lead singer and writer for Matchbox 20) has a wife who lives with a lupus-like condition so he has written several songs about what it is like watching his loved one in pain. Her Diamonds is a beautifully amazing song that I posted a while back, but today’s song (Someday) is more relatable and inspiring for spoonies and non-spoonies alike! That being said, it’s time to live a life you love!
As a chronic illness warrior so many things are out of our control, including seemingly simple day-to-day tasks like bathing or even getting out of bed. We can resign ourselves to despair, because that’s the type of existence chronic illnesses expect of us, or we can fight back. Now, fighting back when you’re physically unable to get out of bed may seem ridiculous and like an outrageously tall order, but I don’t mean literally dukes-out fighting. Attitude is key here, folks.
Here is the first verse to Someday: “You can go
You can start all over again
You can try to find a way to make another day go by
You can hide
Hold all your feelings inside
You can try to carry on when all you want to do is cry”
Now if that isn’t a spoonie anthem, I’m not quite sure what is. I feel like we so often are dragged through these days and they begin to blur into one another. Endless days of pain and medications, appointments and blood draws, sleep and insomnia until we have forgotten the day or month or even year. We carry on and on and on.
Here is the chorus:
“And maybe someday
We’ll figure all this out
Try to put an end to all our doubt
Try to find a way to make things better now and
Maybe someday we’ll live our lives out loud
We’ll be better off somehow
Now, we may never figure any of this out, but we can live our lives out loud. We can make our voices heard. We can support one another and learn from one another. We will likely never understand these illnesses or be able to look into what the future holds, but we can make it through one day at a time together.
Here is the bridge:
“Cause sometimes we don’t really notice
Just how good it can get
So maybe we should start all over
Start all over again”
We get so lost in these illnesses that we can miss the real beauty in the world. Try and watch a sunset or sunrise every now and then. Try and look up at the stars in the sky. Hug someone you love. The little pleasures in life really put things into perspective, I’ve found. Michael and I grew up in the county and we love going back to see the stars at night. It changes everything, even just for a moment.
So we can start over, today. We can choose to live out loud, a life we love. And we will definitely fumble and fall and fail, but what’s important is that we get back up and try again. And keep trying until our lives are ours to love and change. We control more than we think we do. Attitude is key.
We can’t control our illnesses, but we can control how we live with them. That’s much easier to do together.
As usual with a new post, here is the new Song of the Week to empower you and give you strength!
I have to be honest here, when writing these “how to’s” I feel a bit like a fraud! Who am I to tell other people how to do anything? I am no expert in any sense of the word. I am just a girl living with these illnesses, trying to help people whenever and wherever I can. I do have a pretty successful marriage that I believe is in large part due to my amazing husband. That being said, here is how we make it work!
Honesty is key. Both partners need to be straight up with one another at all times. If you’re having a bad (or good) day, they need to know what to expect. If you aren’t up to outings, let them know! Pushing yourself will only hurt you both. Keep it honest about the realities of your conditions. And try to always let each other know what you need. Don’t hold things in until you burst.
Education is Important for Support and Understanding. Chronic pain workshop and education classes can be outstandingly helpful for both parties. Workshops together and separately are vital for understanding. When both of you understand the illnesses and treatment plans you can better work towards a sustainable and healthy future.
Support Groups are Supportive. Not just for the chronic pain warrior, but for the caregivers as well. Caregivers hold a lot on their plate. They feel like they always need to be strong and able to help, but they need help too! It is not easy for them to watch their loved one in so much pain and feel utterly helpless about it. It is important for them to attend Caregiver Groups so they feel supported as well.
Keep the Intimacy Alive! Spouses can feel like nurses if their time is spent arranging pillows, giving medications, and turning on heating pads. It is important to still do “couple things” when you’re up for it! Dress up and go on a date, have a picnic outside, have sexy time! These things are absolutely vital. Orgasms are good for pain relief! That’s an actual fact! Sex and ArthritisSex and Chronic Pain give some helpful hints when discussing sex in the realm of chronic pain. I know it’s a personal topic and varies from situation to situation.
Keep up with the Inside Jokes and Netflix Binges! My husband and I have really gotten closer throughout these illnesses. I think it’s hard not to, when it’s usually just us here dealing with the day-to-day of the symptoms and realities. Because of this, we have many inside jokes and our own little language basically. It brings us closer as a couple and strengthens our bond. We have a couple things on Netflix we’ve rewatched about a million times (Bo Burnham- What) and enjoy finding new shows to binge on!
Remember to Appreciate One Another. This is probably the most important. Just be appreciative of what each of you brings to the table. If your spouse takes great care of you, thank him/her. If you book the appointments and are there for morale boost, that’s an important job too! You’re a team. A damn good one, too. Please and Thank You’s are still the magic words.
Find things to do That Aren’t Illness Related. You can never really take a break from these illnesses. They’re chronic. And we all know what chronic means (thumbs down). But if you like to play computer or video games to take your mind off of the pain, or can beat each other at Words With Friends, those are cute options that keep you connected in a non-illness way!
I hope this was even a little bit helpful! If you have any questions please email me at firstname.lastname@example.org.
*Disclaimer- Bo might not be for everyone. He is a comedian and can be offensive depending on your preferences and tastes*
This may sound weird, shocking, even wrong. Who thanks an illness that, from the outside (and sometimes inside), appears to have ruined their life? I do.
These illnesses have changed my life but I don’t believe they’ve ruined it. And here’s why.
Dear Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease, and Others,
I am writing this letter to thank you for how you’ve changed my life.
Before you I was a selfish person. I went through my life with a sort of self obsessed confidence. I was carefree and eagerly focused on my career and my shopping habits. Gossiping and drama were the center of my days while I should have been aware of the real world instead of my narcissistic universe. I would get enveloped in everything that did not actually matter.
When I began feeling pain everywhere I was angry. I know this sounds like a natural response to a body that is failing an otherwise healthy 25 year old woman, but I was filled with bitterness that was unbecoming of my prior bubbly self. I pushed through, because that’s what I did back then, not knowing that I was further wrecking my already damaged spine. My broken body fueled the drama that was my work (and home) life.
After my first spine surgery I began my Tumblr blog and found my place among the Spooniverse. I had no idea this was even a thing. I had no idea that there were so many illnesses and people like me, suffering with bodies failing young women and men around the world. It shook my egocentric self to the very core. This was so much larger than myself! Through this I realized there were people in far worse shape than I was! There were warriors fighting courageous battles with smiling faces and I was moved by their spirits.
It gave me faith that I could do that, too. I could smile through my challenges and brighten people’s lives, and open their minds and hearts. I could look outside of my own problems and dedicate my life to helping others get through their days, weeks, and months. I could support and mentor new spoonies like I was (and still am!) supported and mentored by powerful, inspirational warriors!
It was around this time when I took stock of my life. I looked around and fell even more in love with my friends and family. They stood by me through my ups and downs, my good times and bad, my selfishness and my thoughtfulness. It was their love and support that propelled me to where I am now. It was their hours spent arranging pillows and filling pill cases and attending chronic pain workshops. And if it wasn’t for them I wouldn’t be the person I am today.
Throughout this whole experience I have been changed. I never knew how strong I was before you took over my body and made it your own. You have affected every aspect of my life and altered my reality and future. I no longer know what tomorrow will bring, let alone the next month or year, but I know I will get through it. You may be trying to break me, but you won’t. I am loved and supported and cared for by people who I never would have met if it weren’t for you. You thought you were ruining my life but you have enriched it in ways I never could have imagined.
So, dear illnesses. You have changed me. And for that, I am entirely grateful.
As usual on Mondays (or Tuesdays, or whenever I get inspired!) please check out the Song of the Week page for a new addition to your feel good soundtrack!
Today, as I was emptying the dishwasher (because we have one now! Way too excited about that) and heading back to bed, I felt the horribleness of self-pity. I was trying to remember my last true “good day” and wondered when things would turn around for the better. I tried to remember every time I had that thought before. How many times do we plan for our next good day rather than make the best of what we have?
Here is where I begin. Here is where I change my way of thinking. Here is where I let go of the self pity, anger, frustration, and negativity. Here is where I alter my perception of my life and future.
This is not to say that I will never experience those feelings again. I’m only human after all. What I am working on is acknowledging those feelings and moving past them. Refusing to wallow in despair about my situation may be hard, damn near impossible some days, but I am a work in progress. Aren’t we all?
So this is my challenge. Today and every day. Make the most of the days I have, because some people aren’t so lucky. Smile every chance I get, not just for myself but for others. Love the family and friends I have, because they are the good in my life. And do what I can with what I have.
Even if I feel absolutely terrible, I want to feel the sun on my face every day. I want to experience my life as fully as I am able.
Our lives may not be what we had imagined, but they are the lives we were given. And we should fight to live them!