When You Are Frustrated with Healthcare Professionals

When I was diagnosed with fibromyalgia, the rheumatologist (who I never saw again) told me that fibromyalgia was related to being a perfectionist, and that I needed to exercise. And that was it. That was all that his many years of training and experience could bring him to say.

When I told a family member (who shall remain unnamed) that I was diagnosed with fibromyalgia (just like his sister had), my unnamed family member replied with, “She’s crazy!” (meaning, the sister, of course, but implying that those with this diagnosis are crazy). Again, he was a healthcare professional.

Now, before I go any further, I should tell you that I am also a healthcare professional, a bachelor-prepared registered nurse of twenty-five years. I was taught that nurses are healthcare advocates for their patients. I took a Florence Nightengale pledge to care for my patients compassionately and be their advocate. I take this very seriously.

I choose to believe that all healthcare professionals go into the field of medicine to help people. We all take a pledge when we graduate. Yet when I got out of nursing school, I was surprised to find that so many doctors and nurses are what I call “jaded.” They have become burnt out in patient care and become immune to people with pain or other illnesses they cannot understand. They have worked a long time (most of them), and are just trying to get through their unbelievably crazy shift.

Doctors have even longer shifts to work than nurses, but they also have something else working against them:  an ego that tells them they must always know what their patient is experiencing and must also be able to fix it. When one or both of these things becomes untrue, it is extremely hard for the typical physician to say, “I don’t know, and I can’t fix it.” Those doctors willing to say this are good doctors, indeed, because they recognize their own humanity. Those that cannot say this tend to call everything that they can’t understand or fix a “psych” problem–something that the patient has made up or that their mind has created in their physical body (psychosomatic illness).

Most  doctors were taught about algorithms and medicine (pills). They were not taught about the mind-body connection or the possibility that there is a definite spiritual and emotional connection to physical illness. And most of them have never experienced what their patient is going through. Most surgeons have not actually had surgery and experienced real pain, yet they are expected to treat it.  Most rheumatologists do not know what lupus or fibromyalgia feels like and must, instead, rely on what research studies have told them about their patients’ pain and pain management. They were also not taught about natural health remedies and, therefore, have a general mistrust of anything labeled “natural.” All of these things combined puts them at a severe disadvantage when trying to treat pain.

I am just going to say it as I believe it to be true:  pain is usually assessed and addressed by the subjective opinions of uninformed, inexperienced, and often, uncompassionate people who just don’t get it. There. I said it.

These healthcare professionals should be able to say,  “I JUST DON’T KNOW, BUT I AM SO SORRY YOU ARE GOING THROUGH THIS.” But it is very hard for a doctor to not understand and admit that they don’t. And, unfortunately, the younger doctors learn from the older doctors, and so many of the younger doctors adopt the same attitudes. This is true of many nurses as well.

In their defense, I will say that many of the people we see at the hospital who are complaining of pain do often LOOK like they are drug-seeking. They come in with positive urine screens for illegal substances. They sometimes lie about their history. They hop from one hospital to the next, and back again. They tend to come in often, while missing their own appointments with their specialists. (Hear me, chronic pain and invisible illness patients when I say, please don’t do this because it truly makes a patient look “suspiscious.”) Some of the time it is hard to distinguish between the ones who want pain medicine and the ones who are truly in pain. It is hard to help someone with an invisible illness in one short hospital stay and is usually best for the patient to go to their own doctor for pain management needs.

I try to encourage anyone who is in chronic pain and who has a chronic invisible illness to get established with a good doctor that believes what their patients say. Try not to use the Emergency Room, as it is for true emergencies. Healthcare workers in the ER get frustrated with this and are less able to be compassionate to those patients who have symptoms that don’t add up with what they see. Chronic illnesses are better dealt with by a specialist, not ER personnel. That being said, I too have had to use the ER because I needed a refill of pain medicine when I left quickly to go to my dying grandmother’s bedside. In my haste, I forgot I needed a refill before I left. Thankfully the ER doctor had a close family member with fibromyalgia. He saw that I was established with a specialist and on a pain regimen, and he was willing to give me a 30 day refill, even though I was only asking for enough medicine for 3-4 days until I could get home. (This was before the new healthcare regulations were established which require patients to get pain medications from only one doctor.)

Other ideas that may help you when you are frustrated with healthcare professionals are:

1. Realize your healthcare professionals are human and can make mistakes. They get tired. They get frustrated when they can’t help a patient, because most of them truly do want to help their patients.

2. Always bring all your medications to every doctor appointment and ER visit. Bring your own hospital records when you go to a new doctor or make an ER visit. Physicians need to see your history, and when you are able to give it freely and openly, they are usually more able to help you, and more importantly, believe you. Be as transparent as you can be, and always let them know what you are doing to better your own health, for instance, participating in therapy or medical education.

3. When you go to the ER or hospital for surgery or a short stay, please expect that there will be long waits. There are a lot of people who need help, and most hospitals and ER’s are overloaded with patients. Always bring someone with you who is able to be your advocate, track down the nurse when you need something, and provide for your immediate comfort needs (such as help to the bathroom or a drink of cold water).

4. Try to be as unemotional as you can when giving your history, and just give the facts. That is how doctors are taught to receive information. They need the black and white details and get frustrated without them. When you do this, they are then more prone to believing you when you are emotional for pain-related reasons. Think back to the childhood story, The Boy Who Cried Wolf. If you cry “wolf” all the time, your healthcare professionals won’t know when to believe you.

5. Don’t expect your nurses and/or doctors to be able to meet all your needs. In medicine today, there are case managers, social workers, discharge planners, therapists, and educators who all have different roles in providing for your needs. Find out who the right people are to arrange for medical equipment, give insurance information/assistance, teach and provide patient education, and provide for various therapies.

6. Always get a second opinion and find specialists for your medical needs, even if it means looking outside your current location. Don’t keep going to a doctor who is truly not helping you or isn’t complying with standards of care. Research your diagnosis so you will know what appropriate standards of care are and what treatment options to discuss with your doctor. Be careful about appearing “cocky” with the information you have researched because many physicians don’t know how to respond well to a patient who may know more than they do about a particular illness.

7. Find support for your own needs, including encouragement groups online (such as God-Living Girls for women with chronic illness), support groups with others who share your diagnosis, and friends who truly understand your pain. Don’t always expect your immediate family to be able to understand and help you with your medical needs. If they don’t have a chronic illness, they probably won’t get it. They don’t understand, and they probably need their own support system as the caregiver of someone who has a chronic illness. (For more information about God-Living Girls, contact Laurie at godlivingwithchronicillness@gmail.com)

8. It may be helpful for you to know that new healthcare regulations have changed the way doctors can administer pain medications and when pharmacies can dispense them. The new laws require that patients sign a pain contract, which usually states that you will only get your pain medications from the doctor with whom you have signed the pain contract. Physicians take this very seriously and will discharge you from their care if you get pain medications from any other doctor. The new laws also require a urine drug screen once per year. This is not only to check for illegal substances, but also to make sure you are being compliant with their current therapy (taking their ordered pain medications). The new laws also have specific time frames for how soon you can refill your medication and how early the pharmacy can dispense it. They also require you to go to only one pharmacy for your pain medications. Hopefully, knowing this information will prevent unneeded frustration with your doctors who cannot dispense pain medications in a way that is outside these legal boundaries.

As a nurse with fibromyalgia, I get it. I understand what you are going through as a patient who is frustrated with healthcare professionals that don’t always adequately meet your needs. It is so very hard on both sides of this healthcare continuum. I hope that the above suggestions will provide you with resources you need to have better relationships with your doctors, nurses, and other healthcare professionals.

_________________

You saw this post first on God-Living with Chronic Illness, a website dedicated to providing spiritual encouragement and resources for those living with chronic pain or illness. You are welcome to pass this post forward to those you know that may benefit from this information, but please respect the copyright privileges of the author.

Disclaimer: The author and God-Living with Chronic Illness do not receive any compensation for references to specific products, ideas, people, or websites. The ideas posted are not intended as medical advice and should not be taken as such in place of your physician’s recommendations.

__________________

Hi! My Name is Laurie, and I am a wife, mom, nurse, and patient living with fibromyalgia. I understand first-hand what life is like with chronic pain and illness. My passion is to help provide others with the spiritual encouragement and resources that I so desperately needed when I was first diagnosed. Please join us on the blog (god-livingwithchronicillness.com) and Facebook page (www.facebook.com/godlivingwithchronicillness) for regular encouragement and hope. Welcome!

img_3202


When It Hurts Too Much

When we think of “sad,” we think of tragedies happening, people dying, hope being lost. I want to tell you a story about a different kind of sad, perhaps the most tragic of all, which is found in Matthew 8: 28-34 in the Bible. Bear with me as we explore a story of sadness on our journey of hope.
 
In this story, Jesus goes to a place called the “region of the Gadarenes.” I confess, I don’t know much about this place, but I do know that there were two demon-possessed men who immediately came out to taunt Jesus. They knew who Jesus was and asked why He was there, “to torture us before God’s appointed time?
 
They knew Jesus had power over them and that He was going to order them out of the two men’s bodies, so they begged Him to send them into some pigs nearby. Jesus did so, and the demons caused the pigs to run away, plunging to their death over a steep hillside and into a lake.
 
You would think this is a good thing. You would think that the people would be celebrating the release of two men who are now free of demon-possession. You would think the people would beg Jesus for more of His healing power.
But not these people. Instead, they begged Jesus to go away and leave them alone. 
 
And I asked myself, “Do I ever do that?
 
At first, I want to say, “No, never. I would never do that.” But then, I think of the times when Jesus is probing into my heart, touching the bruised and wounded areas, asking me to yield something to Him.
 
And I find myself saying, “Go away, Lord, it hurts too much. You’ve done enough. I can’t take it any more.”
 
“No, Lord, I can’t do that. Please make it go away.”
 
“Please no, Jesus, you are doing too much. It hurts. Please no more, please go away.”
 
“You are asking too much. You are digging too deep, Lord. It hurts, please, stop. Please, go away.”
 
You may have said the same things.
 
You may want to say those very things as Jesus begins to dig a little deeper into your heart to remove the hurtful things in order to help you see the hope He wants to give.
 
Sometimes hope is hard-won. It is realized only after we have come to the end of ourselves, when all our dreams and false hopes have been taken away. And it hurts. Deeply.
 
We just may find ourselves saying, “No more, Lord, it hurts too much. I can’t do that. I can’t go any further.”
 
Yet Jesus knows the way to true HOPE in our lives. It’s in this digging and excavation of our souls that He begins to plant the seeds of true hope.
 
And we have to be willing to let it happen. We have to have courage and be brave, and say, “Yes, Lord, this hurts. But I know you have good things on the other side. I know you are trustworthy. You died to save me, and I trust you.”
 
“Yes, Lord, you can dig a little deeper. It hurts, but it is the only way I will begin to give up the things that don’t do me any good, anyway. It is the only way to have more of You. Yes, Lord, yes.”
 
When we are looking for true HOPE in our lives, we must be courageous and brave. We must let the Savior of our souls into the door of your hurting hearts. We must let Him in to do the work of healing and hope, even if it brings pain at first. It seems too hard, too painful.
 
But you can do this. You are not alone. We are in this together, and we will hold hands and link arms in our journey of finding hope. We will fight against the evil forces in our lives and let Jesus claim the victory. We will say, “Yes, Lord, please come in. We are desperate for you.”
_______________
To join some more courageous Jesus-followers on this path of finding real HOPE, meet us at God-Living Girls, an online encouragement group for women with chronic illness and pain, as we start Discovering Hope by Cindee Re. This journey begins tomorrow and will last for 8 weeks as we delve into the place of true hope in our lives. In this group, you will find compassion and help from other women who know what it feels like to lose their hopes and dreams because of chronic illness. You will also see what real HOPE looks like in the lives of women who have been there, done that, bought the tee-shirt. So, please join us on this journey of finding real hope for your life. We will link arms, and we will do this together.

_________________

You saw this post first on God-Living with Chronic Illness, a website dedicated to providing spiritual encouragement and resources for those living with chronic pain or illness. You are welcome to pass this post forward to those you know that may benefit from this information, but please respect the copyright privileges of the author.

Disclaimer: The author and God-Living with Chronic Illness do not receive any compensation for references to specific products, ideas, people, or websites. The ideas posted are not intended as medical advice and should not be taken as such in place of your physician’s recommendations.

__________________

img_3202

Hi! My Name is Laurie, and I am a wife, mom, nurse, and patient living with fibromyalgia. I understand first-hand what life is like with chronic pain and illness. My passion is to help provide others with the spiritual encouragement and resources that I so desperately needed when I was first diagnosed. Please join us on the blog and Facebook page for regular encouragement and hope. Welcome!


When You Need an Eternal Perspective

When you need hope, you’ll grab at anything to get it. It’s a vulnerable place to be. And it’s definitely not a fun place to be.

I feel like I live in a place of needing constant hope. Chronic pain will do that to you. It would be tempting and easy to say, “Look to God for your hope because that is where all our answers are found!”

And that’s true, but I would like to be a little more practical than that. I’d like to show you one way God is helping me find hope, so you can learn to find it, too.

Hope is elusive because it seems to be closely tied to our circumstances, which can change from minute to minute. Our circumstances can easily dictate our emotions, which can easily “boss” around our hope, making it hard to find as our circumstances shift and change.

So, our hope has to be grounded in something different than our circumstances. Our hope has to be grounded in the Word of God.

The Bible can give us so much hope, if we will look there! But we don’t always remember to go there, so let’s go there now and remember what beautiful hope God can give us.

And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast.   (1 Peter 5:10)

Have you ever seen such HOPE?
The beauty of this Scripture is that it gives us a new perspective. Perspective that…
…God has called us to glory, and just like Jesus’ glory included suffering, so our glory will include suffering.
 …In God’s eyes, this life we live lasts just a little while, so let’s ask Him to help us see through His eyes that our suffering also lasts only a little while in the scope of all eternity.
 …Someday soon, God Himself will restore us. He will make us strong, firm, and steadfast.
…We want that strength, firmness, and restoration now, but it is coming later. So now we need to lean in to the suffering, taking care of ourselves in our weakness and allowing our bodies the rest they need.
…The last thing we want is to lean in to suffering! But if we do, we will learn valuable lessons God has for us. As we learn, He will be able to use us to help others going through the same things.

…Our place of strength, firmness, and restoration IS coming, so we CAN have HOPE! This hope is tied to our faith in God’s perspective and God’s working in our lives, so we must live by faith in what He is doing.

Oh, God, thank you for renewed perspective! Help us not to resist the suffering You have shared with us in your grace. Thank you that it is part of your glory–glory that we will experience in all it’s fullness someday soon! Help us to lean into our pain, letting you teach us and use us to help others. Help us to be gentle with ourselves. Help us to see with your eyes. Thank you, dear God, for all you’re doing in us. 

How do these truths give you hope in your circumstances?

For more lessons in finding hope, a newly published resource is available! Discovering Hope by Cindee Snider Re is now being sold on amazon.com! For more information, go to http://www.chronic-joy.org. If you want to support the Chronic Joy Ministry, co-founded by Cindee and her friend Pamela Piquette, order through Smile.Amazon.com. 

Disclaimer: I do not receive any compensation for the above mentioned resources, and I hope that you will be blessed by them as I have.

_________________

You saw this post first on God-Living with Chronic Illness, a website dedicated to providing spiritual encouragement and resources for those living with chronic pain or illness. You are welcome to pass this post forward to those you know that may benefit from this information, but please respect the copyright privileges of the author.

Disclaimer: The ideas posted on God-Living with Chronic Illness are not intended as medical advice and should not be taken as such in place of your physician’s recommendations.

__________________

Hi! My Name is Laurie, and I am a wife, mom, nurse, and patient living with fibromyalgia. I understand first-hand what life is like with chronic pain and illness. My passion is to help provide others with the spiritual encouragement and resources that I so desperately needed when I was first diagnosed. Please join us on the blog and Facebook page for regular encouragement and hope. Welcome!

 

img_3202


When You Need Help to Persevere

If you are human, then at some point in your life you have probably asked the four words, “Is it worth it?”

Is this marriage worth it with all its difficulties?

Is this job worth it with all the stress?

Is this friendship worth it with all the drama?

Is this ministry worth it with all it takes out of me?

Is finishing school worth it with all the work involved?

Is this treatment worth it with all the side effects?

Is this life with chronic illness worth it if nothing ever changes for the better?

And it is when we are faced with those questions, that pain and fatigue scream at us a resounding, “NO!”

What do you do when you are in this situation?

When hurt feelings have you one more argument away from leaving for good?

When burnout and stress has you one step away from quitting your dream job?

When one more drama-filled conversation has you moments away from leaving the best friendship you ever had?

When the hardness of ministry causes you to consider walking away from the only thing you really ever wanted to do?

When exhaustion has you one heartbeat away from sinking inside yourself, rejecting all the things and people that could help?

When incredible amounts of pain have you thinking you can’t go on like this anymore, and maybe it would just be easier to end it all?

Living with pain and illness may have you questioning whether everything you always wanted is worth it anymore.

Here’s the hard truth: perseverance doesn’t always guarantee us desired results.    (Nicki Koziarz, 5 Habits of a Woman Who Doesn’t Quit, Lifeway Press, 2016)

Perseverance may not always bring us the perfect marriage we always wanted, but it’s still important to respond with the love.

Perseverance may not always give us the desired results at our job, but it is still important to do our best.

Perseverance may not always give us drama-free friendships, but it’s still important to forgive.

Perseverance may not always give us a stress-free ministry, but it’s still important to make good choices.

Perseverance may not always give us a summa cum laude finish, but it’s still important to keep studying and finish well.

Perseverance in treatment may not make the illness go away, but it’s still important to trust in God.

While our hearts and bodies scream “QUIT,” God’s word encourages us in a different direction:

So we must not get tired of doing good, for we will reap at the proper time if we don’t give up. (Galatians 6:9, NIV)

I can do all things through Christ who gives me strength. (Philippians 4:13, NIV)

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:29-31, NIV)

5 Habits to Help You Persevere

While reality may be hard, an even truer reality is that God Himself will enable us to persevere. In her recently published book, 5 Habits of a Woman Who Doesn’t Quit, Nicki Koziarz shares with us five strategies we can incorporate into our lives that will help us keep on keeping on in the difficulty of life:

  1. Accept the assignment of refinement. We can choose to accept that the situation we are currently in is an opportunity for refinement. If we allow it to, it will refine our character and strengthen our souls. The other option is to become angry, which will eventually turn into bitterness and suck the joy and life out of our souls.
  2. Follow through despite how we feel. We must determine to make the right choices even though it is hard to do so. Situations may not always work out like we want them to, but if we continue to make the right choices, we can have peace in our minds in the midst of the hard circumstances.
  3. Stay open to the movement of God. If we keep our hearts open, we will see God move in the hard circumstances and work those hard things out for good in our lives. (Romans 8:28) It is not always easy to do this because it requires faith when we don’t yet see results. But that is what faith is—trust despite the inability to see how it will end. As we keep seeking Him, He will encourage and strengthen us through His Word.
  4. Give others what you need. This may be the hardest habit of all, because it is difficult to extend to others what we really need to be receiving from them (especially when we aren’t receiving those things from them). Again, this takes trust in a God who loves us and will provide for our needs when others do not. He is the One we ultimately can trust to take care of us.
  5. Move forward in faith. As we adopt these new habits, rely on the strength of God, and determine to live by faith, we can begin to move forward. Sometimes moving forward only means moving one step at a time, and sometimes moving forward means waiting or resting. But in the spiritual realm, we are still moving forward in our faith when we choose to trust and wait, as well as when we are putting one foot in front of the other. Regardless, as we rely on His strength, God will enable us to keep going. Remember, you only have to take the next right step. You will only make it over the mountain one step at a time, so don’t be overwhelmed by trying to tackle it all at once. As we make the next right choice, we will get there eventually, and one day, we will be able to look back on that mountain and know that, in God’s strength, we made it through.

When we need to truly persevere in tough situations, implementing these five habits will help us make it through the impossible. Which habit will help you the most as you face the mountain in front of you right now?

_________________

You saw this post first on God-Living with Chronic Illness, a website dedicated to providing spiritual encouragement and resources for those living with chronic pain or illness. You are welcome to pass this post forward to those you know that may benefit from this information, but please respect the copyright privileges of the author.

Disclaimer: The author and God-Living with Chronic Illness do not receive any compensation for references to specific products, ideas, people, or websites. The ideas posted are not intended as medical advice and should not be taken as such in place of your physician’s recommendations.

__________________

Hi! My Name is Laurie, and I am a wife, mom, nurse, and patient living with fibromyalgia. I understand first-hand what life is like with chronic pain and illness. My passion is to help provide others with the spiritual encouragement and resources that I so desperately needed when I was first diagnosed. Please join us on the blog and Facebook page for regular encouragement and hope. Welcome!

IMG_3230_2


When You Want to Quit

When you live with chronic pain, every day your body screams “QUIT!” How do you manage to keep going despite the pain, fatigue, and discouragements that threaten to overwhelm both body and soul? Continuing to put one foot in front of the other when experiencing daily pain and exhaustion is not easy, but it is possible when you adopt thoughts, attitudes, and habits that help you cope instead of quit.

Read More