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.

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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!

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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.”
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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.

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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.

__________________

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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 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.

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How to Find Hope Through Acceptance

Life is hard enough without having a chronic illness. The stress of chronic illness and pain can push us right over the edge to a place where life becomes unbearable and all hope is gone. We desperately need the kind of hope that withstands the difficulties of life. One way to begin to find hope is through acceptance.

It took me ten years to come to the place where I accepted that my fibromyalgia and chronic pain were not going away. When I finally got to that place of peace, I was accused of both choosing to make illness my identity and not having enough faith that God would heal me. I was prayed for and prayed over. I was told I needed to exercise more, take supplements, lose weight, stop taking so much medicine, drink special water (two different kinds, in fact), and quit being lazy.

In reality, I went to multiple doctors, took numerous supplements and traditional medicine, tried chiropractics (five times) as well as physical therapy (three times), and had three surgeries. Finally, I realized that the pain was not going away, and that I might as well learn to live with it.

When you live with chronic pain and illness, every day is hard. Learning to accept that the pain and illness is not going away is even harder. But what I realized in the process is that acceptance can actually bring hope.

So, HOW do you get to that place?

Start by accepting that this circumstance of chronic illness is an opportunity to refine and strengthen your character. Having this perspective enables you to see the good in your situation and can even bring joy back into your life. Because of the difficulty you have endured due to chronic illness and pain, you will develop a strength that you would not have had before. You will become more sensitive to the hardships of others. You will be able to help others experiencing pain and illness, because you understand what they are going through. You will begin to respect the person you are becoming, because you are developing the inner strength to keep going despite the pain. You are a person who will not quit in the face of adversity.

Acceptance of the pain itself does wonders for your ability to cope. This does not mean, necessarily, that you are discontinuing treatment or giving up trying to make the illness or pain go away. This type of acceptance simply means that, while you realize that the pain is not going away today, you also realize that life can still be good, and that you can enjoy participating in your chosen activities. To do this, you must decide to take the pain with you wherever you go (because it is going with you whether you like it or not). You are making the choice to accept the pain because you know that it will be with you, anyway. At the same time, you choose not to focus on it or let it hinder you from enjoying the activities you want to continue. When you do this, you are well on your way to being able to cope when you would otherwise normally quit, which brings us to another point.

Don’t quit activities that make you happy. Quitting all the activities you enjoy because of chronic pain will result in isolation and depression, so choose the activities that are important to you, and keep participating in them. These things will give you a sense of normalcy, and continuing in them will help prevent devastating losses that can accompany chronic pain and illness. You will need to learn how to push yourself when you need to push without pushing yourself past your limits. Through this process, you will develop a sense of what is too much to do at one time.

Pace yourself. Do this by allowing yourself to rest. Carve rest days into your week and rest periods into your days. This is essential and will enable you to keep going for the long haul. It will also prevent you from having to quit an activity because you have overdone it.

Be patient with yourself. You will continually fail your personal expectations because you no longer have the same capabilities that you used to have. Recognizing and accepting this fact will help you be more accepting of yourself and your situation. Giving yourself grace when you need it will help keep you from becoming discouraged with yourself and your inabilities. Life is not what it used to be, and you do not have the same abilities you used to have. You will need to readjust your expectations of yourself. While not an easy lesson to learn, it is one that will help bring contentment back into your days. This does not mean that you give up and quit because you are no longer able to do what you used to do, rather it helps you know when to stop an activity now, so you can pace yourself and keep living the new life you have been given with a personal sense of peace and grace each day.

Be patient with others. Your family and friends do not know what chronic pain feels like, and hopefully, they will never know. Some try to understand, but others do not. Unfortunately, some friendships will fall away because some people do not know how to help in situations like this. But some friendships will grow stronger, and it is those people that will stick by you in the days to come. Focus on those friendships.

Try to make new friendships with people who do understand chronic pain. These types of friendships will provide the support that you will need in the future. There are numerous online groups for people with chronic illness. One such group started as a result of this blog and is called, God-Living Girls. To join, go to www.facebook.com/groups/godlivinggirls. Many of the people in these types of groups are experiencing the exact same things you are dealing with on a regular basis. They will help give you ongoing support and encouragement. Over time, you may just develop friendships that will last a lifetime.

Ask for help. This is perhaps one of the hardest lessons to learn, but it is essential when living with illness or pain. You may be surprised at the number of people who are willing to help. Unfortunately, sometimes family and friends grow weary of listening to and helping the person in pain. If you are experiencing this situation, try to ask other people for help when you need it. Try not to mention your pain constantly. It is natural to talk about what you are experiencing, but you must become aware of when people are weary of listening to it. If you are unable to find tangible help that you need, such as assistance with medical bills, food, or transportation to doctor’s appointments, research the community resources in your area that offer help to people living with chronic illness. There are resources available that offer transportation to physician’s offices, assistance with financial needs, or help with food. Government agencies or churches in the area may also be able to provide for these types of needs.

Focus on the good in your life. If you have trouble identifying the good things, ask a friend to help you have a broader perspective. Every day before bed, try to think of three things for which you are thankful. Practicing gratitude in this way will help you maintain a positive attitude. Purposeful gratitude has a way of lifting you up out of the despondency of your situation and enabling you to gain a more positive and hopeful perspective, which ultimately helps you keep going when you would otherwise quit. You will find a printable gratitude journal in the “printable” section of this blog.

Deal with bitterness and other negative emotions daily. Difficult emotions like anger, bitterness, frustration, fear, anxiety, and depression are emotions that we are forced to deal with all the time when living with chronic illness. Dealing with them as soon as they come up prevents them from becoming a way of life. If you are dealing with particularly difficult emotions, consider talking to a mental health counselor, life coach, or pastor.

Remove “I CAN’T” from your vocabulary. If you don’t remove those two words from your vocabulary, you will never do anything because chronic pain makes you feel capable of nothing. Most of the time, to be able to accomplish anything you will have to force yourself to put one foot in front of the other. Remembering that will help you do what you need to do to complete the task at hand. You will have to repeat this process with every task you face every day, so reward yourself when a goal is accomplished. For example, after you have successfully made it through a hard day at work, take a relaxing bath later. Associating rewards with hard daily tasks will help you to complete those tasks.

Accepting chronic illness or pain is a powerful way to learn to live with it, manage it, and move forward. Another essential way is by attending to your spiritual needs. To join a ladies’ Bible study called Discovering Hope by Cindee Re, go to God-Living Girls and request to join. The study starts January 15, 2017, and is free. The book is available on amazon here. We would love to have you join us as you take your first steps towards finding real and unending HOPE.

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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. To find a welcoming, positive place for women with chronic illness to connect, join God-Living Girls. Welcome!

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When You Are Desperate

Chronic pain will make you desperate faster than anything else I know–desperate for help, desperate for hope,  and desperate for joy. It has made me desperate for God and for more of His power and grace in my life. With that desire in my mind, I have been studying the different names of God so that I can know Him more. Today the name I studied was the “Good Shepherd.” Read More