18 April 2012

#HAWMC post #18

Open a Book

Acceptance of Chronic Pain

Today's prompt was to choose a book, open it to a random page and point to a phrase. Then use that phrase to get started writing for 15-20 minutes. I can never limit my writing to that time length. So I chose the book Pain Clinical Manual for Nursing Practice by Margo McCaffery and Alexandra Beebe. I opened it to pg 205 which is in a chapter titled "Chronic Non-Malignant Pain:Special Considerations". The section was titled "A Guide to Setting Goals". The quote I picked was:

It may be years before the patient accepts that a cure [for their chronic non-malignant pain] probably is not realistic and that he/she needs to make plans to handle pain on an on-going, usually daily, basis. This acceptance cannot be forced on the patient. It is similar to a form of grief that must be endured and worked through gradually.(3)

Chronic pain is a serious problem in our society. One issue anyone with chronic pain faces is acceptance of the condition or disease that causes their chronic pain. It is not easy to get to the stage of acceptance. In fact. for a lot of people, reaching acceptance is NOT a final goal that can be worked toward. According to Elisabeth Kübler-Ross, there are five stages of grief. These are the stages that people typically go through when a loved one passes away, but these stages can also be felt by anyone in a situation where they suffer a loss in some way. For the person with a chronic illness, they typically grieve the loss of their health, normalcy in their life and the lives of their loved ones, their job, and friends.

The five stages of grief are:
  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance
In the case of grieving the loss of a loved one, a person will usually work through the stages of grief and once they reach acceptance, they are done going through the grief process. It is a more linear process than when one is working to accept a chronic illness. Although the earlier stages can be revisited at times when the person they are grieving is strongly on the mind of the person grieving them. Also, not everyone will go through all five stages in the order they are listed, and some stages are skipped entirely. Each person's journey through grief is "as individual as a fingerprint." (1) At times "transitions between the stages can be more of an ebb and flow rather than a progression." (1) Use the five stages as a guide to understanding the emotions that come with a new diagnosis. It may help you recognize the emotions you are dealing with and by understanding the emotions, it may be easier to work through your grief.
For the person with a chronic illness, the grief process is more of a cycle in many ways. Just as when a person is grieving the death of a loved on does not go through all of the stages or does not go through them in order, neither does a person with chronic illness. In addition to that, a person with a chronic illness will likely return to earlier stages of grief at various times in their life. A worsening of symptoms (known as a flare to many with chronic illness) and especially an extended flare, a new diagnosis or symptoms, a setback or a major stressor that is unrelated to health can all cause a person to return to a previous stage of grief. A new diagnosis will especially cause a person to adjust to a "new" normal and may cause them to grieve the old normal. This adjustment can take time and work, and after you've reached acceptance, it can almost feel like a defeat to go back to a previous stage of grief and work through it all over again. Over the 28 years since my diagnosis, I have had to work through the stages a number of times. I had to adjust to being diagnosed with juvenile rheumatoid arthritis (JRA) at the age of 7. Having a pain causing disease is a challenge to deal with at any age, although I truly feel that it is somewhat easier for children to handle than it is for adults. I believe this because children are somewhat used to adapting, changing, and having to adjust how they do things as they grow up. Adults tend to want the lives they've made for themselves to stay as they have worked hard to create. The only changes adults want are those they have initiated. Even then, there are some wanted changes that are hard to adjust to during the process of change. An unwanted change such as a chronic illness is even harder to adjust to. Working through the stages takes time no matter the age of the person feeling the grief or the reason they are grieving. Below is a description of each of the stages. 


Denial is defined as a "refusal to accept the facts, information, reality, etc., relating to the situation," (1) Denial is a normal defense mechanism and it is normal to react this way. Denial is a common emotional response when first told you have a chronic illness. Many times when something is wrong with our health, we go to the doctor and expect to be cured. Unfortunately, with a chronic illness that causes pain, there generally is not going to be a cure. We tend to go into denial when we realize we have an incurable illness. We may think we've been diagnosed. We may think that whatever is wrong with us is a temporary issue that the doctor is mistaking for a chronic illness. We do not want to begin to think that what is causing our pain is an incurable disease that will cause us to need medications for the rest of our lives. A disease that might lead to disabling problems, a disease that might shorten or even end our lives. We do not want to think of the changes that having a painful disease will bring. What will it do to our loved ones, our friends, our jobs? By living in denial, it's easy to believe that everything will be fine, nothing will change. But, by being in denial, the coming changes will seem to hit out of nowhere and we won't be prepared for them.  By being unprepared for the coming changes, we will have a much harder time dealing with them. 

We need to begin by learning everything about our disease that we can. We need to learn things such as:typical symptoms, treatments, complications, and things that may not be the disease itself, but may be a secondary disease that commonly accompanies the disease we have been diagnosed with. Knowing all we can gives us power as patients. The power to be able to make decisions when needed, the power to be involved in our own care as well as the power to become the manager of our health care and work as a partner with our doctors. This is different than being simply a patient going along with all that the doctor tells us to do. Being in the driver's seat rather than just along for the ride. 

There are two issues to be aware of in being a knowledgeable patient. First, and possibly most important, learn the difference between information that is good and what is not. There are a number of web sites that give out false and even harmful information. Beware sites such as this. Even information that may not be false may be inappropriate for your situation. In looking for information on the internet, use sites that are known to be reputable. Also, NEVER make changes to your treatment plan without discussing the intended changes with your physician! Making changes without discussing them with your doctor can lead to serious problems.


The next stage in the grief cycle is anger, which can show in many ways. It can be directed at the disease, God, our doctor (for giving us the news), ourselves, and even others around us. Those who are family and friends of someone with a chronic illness need to understand that there are times the person may be angry and trying to work through this stage of grief. They may not recognize that they appear angry toward others and in fact their anger may not be directed at anyone, but may be directed toward the disease process or their own body for causing the problem. Pain too can make a person sound angry when they aren't at all angry. I know for me, I've been accused of sounding angry when I am not, I am just hurting badly. Try not to take it personally if you have a loved one with a chronic illness who is experiencing this stage in the grief cycle. Try to be non-judgmental and detached if possible, while also saying to the person, "You seem to be angry lately. Is there something I can do to help?" The person may snap at you or they may take you up on your offer of help. They may not realize that they appear angry. You may find that you've given them the opening they need to discuss their problem. For those with a chronic illness, when you are in this stage, try very hard not to take your anger at whatever is the cause of your anger out on those around you who are innocent bystanders. It takes so much out of you to fight the pain, that keeping your temper under control can be hard. It is vital to keep control of your temper so as not to alienate those you love. Being IN pain does not give you the right to BE a pain. It may help, rather than to lash out at someone, to explain that you are feeling angry and that it is not them, but that you hope they don't take your anger personally, that it's the disease, not them. It's hard not to take out the anger you feel over the changes in your life on those closest to you, but it's best not to do that as it can be damaging to your relationships. 

While not taking your anger out on those around you, you also CANNOT direct that anger inward. In all likelihood, there is nothing you have done to cause the disease. Now there are rare cases where someone's choice of sports or job may have caused the pain and injury, but that is a rare issue. Even in a case such as that, you should not blame yourself. If you are genetically predisposed to have the disease, nothing you do or don't do is likely to have brought it on. You should not feel guilty for being diagnosed, you did not ask for this disease. Anger directed toward yourself is not at all helpful. 

Likewise, anger directed at the doctor who diagnosed you, anyone else. or even God is not healthy and can impact you negatively. Anger causes you to be tense, tenseness causes increased stiffness, increased blood pressure, and a host of other issues. You need to find a way to release the anger in a healthy manner. Find someone you can talk to that can help you work through any anger issues that you may be dealing with. 


The third stage in the cycle of grief is bargaining. This stage, for a person facing death can "involve attempting to bargain with God. People facing a less serious trauma can bargain or seek to negotiate a compromise....It is simply of no avail to say "God, I'll do this if You'll take away this disease."(1) First, we should be asking God's will, not giving Him a list of problems to fix. Second, we need to realize that God's plan for us might seem incomprehensible to us, but He knows each and every tiny detail. We are given trials in life to bear and to teach us something. We may not understand His purposes, but eventually we will realize that the lessons we have learned through our pain are helping us in other areas of our life.


The  fourth stage of the grief cycle is depression. Anyone going through health problems will feel sadness, regret. fear, uncertainty, etc. It is natural and normal. It shows "that the person has at least begun to accept reality."(1) The changes that  chronic illness can bring are not easy to handle. Physical changes, changes in employments, family and friends who don't understand, even changes in your looks due to medications (hair loss due to methotrexate, weight loss from not eating due to loss of appetite, or weight gain from prednisone and other medications, joints drifting out of place because of RA damage, etc.) can all be very hard to deal with. All of this on top of dealing with the pain is not easy. Pain is tiring. It can suck all of a person's energy to try to keep up despite the pain. Pain takes a toll both physically and emotionally. It can rob you of sleep at night, and tire you during the day. It can cause you to feel on edge, which can lead to feeling depressed because you are on edge with others and feel bad about that. Fighting the pain, not knowing the future and what you will face is a scary thing. Being afraid is also a depressing thing. Being unable to do things you previously had no trouble doing can also be depressing. There is absolutely NO shame on asking for help in dealing with the depression. For one thing, certain anti-depressants also have an effect on pain as well as depression. Fibromyalgia pain is commonly treated with tri-cyclic anti-depressants, SSRIs and SNRIs. Some anti-depressants help regulate sleep because of their effect on serotonin, others have a sedative effect.

When a person who is dealing with pain has a doctor who suggests an anti-depressant in order to help their pain, they assume at times that the doctor is trying to tell them they are depressed. This is not always the case. As noted above, anti-depressants help with pain, but are typically used in lower doses than the therapeutic dose for depression. But, for the person who is also dealing with depression, treating it can possibly lead to helping the pain. This occurs in two ways. As mentioned, some anti-depressants generally have a positive effect on pain. But, also treating the depression itself can positively affect pain. There tends to be a cycle of pain → depression → sleep problems →pain and so on. It can be a very tough cycle to break without help of some sort. 

The American Pain Foundation in a Q&A on Antidepressants for Pain says that 
Depression has an amplifying effect on pain. By decreasing depression, we can de-amplify the sensation of pain and therefore decrease pain....[D]ecreasing depression when it is also present with pain is a very significant intervention for decreasing pain itself and improving the patient's ability to cope with any pain sensations that they have.
There are non-medication ways of dealing with depression as well. Therapy can be effective, both private and group therapy, as can support groups.  Each person deals with their depression in their own way, but it needs to be dealt with. Ignoring it will only allow it to worsen and become a bigger problems than it is. 

Discuss any signs of depression with the doctor who treats your chronic illness. If the depression is a new symptom, they may feel comfortable prescribing anti-depressants themselves or they may refer you to someone who treats depression. If the depression was present before the chronic illness and the pain, your doctor needs to know what medications you use  to treat it as well as the effects of your depression on your pain and vice versa.


The fifth stage in the grief cycle is acceptance. It can take years to reach this stage. "[B]roadly it is an indication that there is some emotional detachment and objectivity."(1) Generally, with acceptance you have reached the stage where, while still doing everything you can to treat your pain, it's not such a fight in some ways. You recognize that you'll be living with pain the rest of your life, barring any advances in medicine. You recognize that, like it or not, this is your new life and a new normal. It does NOT mean there will be no more ups and downs or that you won't return to one of the other stages of grief. This occurs especially if you are going through a particularly rough patch, or if you get an added diagnosis or new and increasing symptoms. Even for someone who reached acceptance early on, they can go back into a prior stage. It can be hard to go from acceptance to a stage you thought you'd gotten past, but know that you've reached acceptance once, you'll eventually arrive back there again. Acceptance can be total or partial. At time, some parts of the chronic pain issue can be ignored rather than accepted, if they are not a big factor in your journey through pain. If you do not experience an aspect of living with pain, it can easily be ignored until it becomes an issue, making acceptance partial. 

It does take work at time to reach acceptance. However, if a child is very young when diagnosed with a pain causing disease, they may reach acceptance of it as well as any subsequent issues much easier than adults do. This is because if diagnosed young enough, at an age when they do not remember life before chronic illness, then pain and all it entails is NORMAL to them. They don't remember the pain-free life. They may mourn the differences between their life, abilities, etc and those of their siblings, classmates and friends. But, it is MUCH easier to accept something when you do not remember anything different. 

Patients who reach acceptance recognize that while there may be no cure for their illness and pain, and that they will never be pain-free (barring a miracle), there ARE ways to minimize the pain. Treatments can decrease their level of pain to a level the patient can be able to function at and a level they can tolerate.

Chronic pain MUST be dealt with on a daily basis. Many patients are scared to use narcotic pain medications before they've reached the acceptance stage. If the benefits of using a medication outweigh the risks and a better quality of life can be achieved, it makes sense to take the medication. The stigma of using narcotic pain medications and the assumptions of misinformed people that anyone who takes a pain medication is an addict are hard to battle. The fact that a person with chronic pain properly uses a narcotic medication to control that pain does not necessarily mean they are any more an addict than a diabetic using insulin to treat their diabetes. They are likely physically dependent on the medication. But that is a normal part of taking medications to treat a chronic illness. Using a medication in an appropriate manner to treat a medical condition that it commonly is known to treat is the proper use of medication. As long as the dose is high enough to treat the pain effectively but not so high that it consistently causes problems with intolerable side effects (beyond the initial period when a narcotic  is first started or a dosage is increased), and the timing of the dose is such that the ups and downs of the medication in the body are minimized and use is consistent with generally accepted standards or can be justified if beyond normal usage, then using a narcotic for pain (its intended use) is no different than any other person using a medication to treat a chronic condition. 

Of course addiction is possible. But, with true addiction there comes a compulsion to obtain the drug at all costs. With physical dependence, a medical condition is being treated in a manner consistent with the needs of the disease and the person cannot miss the medication or they will have a negative result. Some people with chronic pain will also go through withdrawal if the medication is not taken on a regular schedule. This is also not a sign of addiction. It is a normal reaction. Withdrawal can occur with medications other than pain medications. Prednisone withdrawal can happen as can withdrawal from other medications.

Becoming tolerant to the medication is also not a sign of addiction. It is common with many non-narcotic medications to start at a lower dose and need to raise the dose later on. This is no different for narcotics. Some tolerance is good as well. When a medication is taken on an on-going basis, the side effects can be hard to deal with in the first few weeks, but then as the body gets used to the medication (tolerance) the side effects that were a problem in the early stage are no longer an issue. For more in-depth information on the issue of chronic pain and these things, see Chronic Pain: Addiction, Dependence and Tolerance.Unfortunately, people with chronic pain "are probably more likely to encounter unsympathetic attitudes in family, friends and caregivers, e.g. disbelieving the existence of severity of the pain. Such attitudes increase the patient's distress and reinforce the feelings of inadequacy." (3) 

Many times with acceptance comes a decreased focus on finding a cure and an increased focus on ways to cope with the pain and the ability to function in spite of the pain.People who accept their pain show a willingness to try more self-management techniques such as: relaxation, pacing, physiotherapy, support groups (for help coping mentally and emotionally); non-invasive pain relief measures such as distraction, imagery, hypnosis (even self-hypnosis at times); heat or cold application, superficial massage, pressure/deep massage, vibration, TENS, E-stimulation and diathermy. 

A person who has accepted their chronic pain has NOT "given in" to the pain, "let the pain win" or any other negatively worded explanation. The person who has accepted their pain is also not "weak". It take considerable strength to live with chronic pain and to attempt to live the best life possible while managing it. Chronic pain is not going anywhere anytime soon. Spending all of your energy in battling against the pain with all guns blazing gives you less energy to thrive in spite of the pain. It truly is possible to thrive with chronic pain. You must learn to pick your battles. There is no point wasting your energy fighting an battle you cannot win. Continuing to fight leads to stress due to losing battles. By accepting that chronic pain is in your life, you are no longer battling; you are learning to LIVE with chronic pain. By no longer fighting, you have more energy to LIVE. You've not given up or given in to the pain. What has happened is that you've learned that while you have chronic pain, it is not ALL of you; you are more than a person with chronic pain. You are a unique person who has the needed tools to thrive in spite of chronic pain.

Works Cited

  1. Five Stages of Grief. Elisabeth Kübler-Ross Foundation, 2012. Web. 18 Apr. 2012 .
  2.  Fishman, Dr., Scott Antidepressants for Pain. American Pain Foundation, Jan. 2005. Web. Apr. 2012 .
  3. McCaffery, Margo, and Alexandra Beebe. "Chronic Non-malignant Pain Special Considerations." Pain Clinical Manual for Nursing Practice. Ed. Jane Latham. London, England: Times Mirror International Publishers Limited, 1994. 205-206. Print.

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