Emotional Aspects of Dealing with PN and Chronic Pain
If you have a condition like pudendal neuropathy, you need to realize that constant pain, no diagnosis, or treatment failure usually causes intense frustration, anger, denial, aggression, depression, anxiety and other emotions. This receipt of bad news is all part of a perfectly predictable and normal pattern. It is nothing to be ashamed of or feel guilty about. But if it's never happened to you before, you may not recognize the pattern for what it is, and become trapped in a downward spiral of inability to deal with your problems. This pattern causes the average person to begin thinking irrationally and behaving abnormally.
The pattern is called the Cycle of Acceptance, which is also sometimes referred to as the Cycle of Grief, or the The Kübler-Ross grief cycle. Entering it is unavoidable upon receipt of bad news. How long it takes you to complete the cycle is critical. The longer you are in it, the less likely you will ever fully complete the cycle, the more likely you will be unable to manage your condition wisely, and the more likely you will be terribly unhappy.
BACKGROUND
For many years, people with terminal illnesses were an embarrassment for doctors. Someone who could not be cured was evidence of the doctors' fallibility, and as a result the doctors regularly shunned the dying with the excuse that there was nothing more that could be done (and that there was plenty of other demand on the doctors' time).
Elizabeth Kübler-Ross was a doctor in Switzerland who railed against this unkindness and spent a lot of time with dying people, both comforting and studying them. She wrote a book, which is now world famous, called 'On Death and Dying'..
In the ensuing years, it was noticed that this emotional cycle was not exclusive just to the terminally ill, but also other people who were affected by bad news, such as losing their jobs, divorce, pain or anything else being negatively affected by change. The important factor is not that the change is good or bad, but that they perceive it as a significantly negative event.
There are two diagrams of the Cycle of Acceptance, that may be helpful in understanding it more accurately. Many of us have gone through this. Take heart. Nearly all of us have emerged from this unpleasant but common phenomenon okay. We can help you through it too, if you will just honestly acknowledge what is happening to you.
Sticking and cycling
Getting stuck
A common problem with the above cycle is that people get stuck in one phase. Thus a person may become stuck in denial, never moving on from the position of not accepting the inevitable future. When it happens, they still keep on denying it, such as the person who has lost their job still going into the city only to sit on a park bench all day.
Getting stuck in denial is common in 'cool' cultures (such as in Britain, particularly Southern England) where expressing anger is not acceptable. The person may feel that anger, but may then repress it, bottling it up inside.
Likewise, a person may be stuck in permanent anger (which is itself a form of flight from reality) or repeated bargaining. It is more difficult to get stuck in active states than in passivity, and getting stuck in depression is perhaps a more common ailment.
Going in cycles
Another trap is that when a person moves on to the next phase, they have not completed an earlier phase and so move backwards in cyclic loops that repeat previous emotion and actions. Thus, for example, a person that finds bargaining not to be working, may go back into anger or denial.
Cycling is itself a form of avoidance of the inevitable, and going backwards in time may seem to be a way of extending the time before the perceived bad thing happens.
Note that the Cycle of Acceptance phenomenon can cause people to engage in complaints (due to frustration), arguments (due to frustration and aggression), and attacks (due to aggression). This is perfectly normal behavior, but it is unproductive and distracting. Therefore these are unacceptable types of behavior unless those you are communicating with are prepared to deal constructively with your behavior.
If you do not honestly acknowledge the Cycle of Acceptance and try to get to the acceptance stage, you will be emotionally vulnerable and
probably undergo tremendous emotional suffering. Three extreme forms of this are pathological behavior, severe depression, and emotional breakdown.
1. Examples of pathological behavior are prolonged vicious arguments, verbal attacks, verbal abuse, physical abuse, and substance abuse. Pathological means behavior that is habitual, maladaptive, and compulsive.
2. The second form, severe depression, is similar to emotional breakdown, but is less healthy because it lacks the tendency for self repair that occurs when breakdown causes the mind to take a rest. There are many theories. One is that depression centers around being subconsciously convinced a problem is insolvable no matter what you do. This makes the conscious mind feel trapped, hopeless, and full of despair. In solvability is a rational, normal, initial conclusion, but is often false, due to misperception of the problem or unawareness of a solution or a problem solving path to at least a partial solution. The depressed mind is muddy, while the one in breakdown has gotten away from the source of the problem and is thus cleared up a little.
For these reasons and a host of others that are little understood, severe depression frequently leads to thoughts of suicide. Despite strong taboos, this is a perfectly normal response and nothing to feel guilty about. All the mind is doing is examining alternatives. In fact, due to the prolonged intense pain of PN and the way this disrupts one's normal lifestyle and happiness, if you never consider the option of suicide for at least a little while, you are probably in the minority and are not examining alternatives. The drawback to suicide is it's an inflexible, permanent alternative.
The first step to get out of depression is to acknowledge it is happening and is a normal, expected part of the Cycle of Acceptance.
3. The third form, emotional breakdown, is the mind's way of dealing with inability to find a rational way out. Instead of continuing to take action that is leading nowhere, the mind does nothing for awhile. While this is called a breakdown, it is actually a reliable coping mechanism that almost always leads to a return to a normal existence, and understanding and acceptance of the "problem." The mind is simply taking time off to repair itself.
In many cases the "problem" is not the original problem, but a new one you became emotionally vulnerable to while suffering from the first problem. For example, those suffering from stress or pain are much more vulnerable to psychological abuse, also called verbal abuse.
How to explain Pudendal Neuralgia to family and friends
Here is a wonderful excerpt written by a PN sufferer. Having such a rare disease can make a person feel very alone. Even more frustrating is that since Pudendal Neuralgia is a relatively new illness, there is a lack of information about it. For example, if you go to work and you tell your co workers that you are having "back pain", everyone can usually relate to what the person is going through. Now imagine that you have pain in an area that is not usually spoken about. How do you let others know what is going on? Well, here is an excerpt of how to explain Pudendal neuralgia to non sufferers.
What does it feel like to suffer from Pudendal Nerve Entrapment or Pudendal Neuralgia
Pudendal Nerve Entrapment is a rare and extremely painful disorder. Sufferers have described the pain as feeling like “burning acid in their pelvis”.. “their bladder and bowel were on fire”, ”the same sensation as getting soap in your eyes, only in your pelvis”.....”like you have a hot poker trapped in your bowel or vagina”....”like razor blades are constantly cutting your pelvis apart”....”like something is pulling or twisting your genital organs”... and the list goes on. Nerve pain is not comparable to arthritis, fibromyalgia or the simple aches and pains felt by the general population. It’s the sort of pain that would send most people to the emergency room.
What Is Pudendal Neuralgia or Pudendal Entrapment?
A nerve can become trapped in any part of the body. For example: carpel tunnel syndrome is essentially a trapped nerve in the wrist, but the nerve is easy to access and un trap because of it's location. Because the pudendal nerve is situated deep in the pelvis, it is difficult to access with injections or surgery. And, because the pudendal nerve serves a very sensitive area of the body: bladder, bowel, genitals...it can be more painful and debilitating than other nerve pain or entrapments.
Why is it so difficult to diagnose?
The pudendal nerve cannot be viewed by your standard medical tests such as an MRI, CAT Scan or X-Ray. The nerve originates near the sacrum in the lower back, and branches out to the bladder, bowel and genital organs. This is the core stabilizing area of the body, and is therefore densely infiltrated with connective tissue, ligaments, muscle and fascia. Picture the nerve as a long piece of spaghetti with tiny branches buried deep within all this tissue and muscle. Standard medical tests cannot visualize tiny nerve fibers. As a result, many sufferers have been misdiagnosed with lumbar disc problems, chronic prostatitis, vulvodynia, interstitial cystitis, gynecological problems, and unfortunately some patients are referred to as “head cases” when their doctors are not able to find the cause of their pain. Also, because of it’s rarity most physicians are not trained to look for it. Even the standard test for pudendal nerve function (PNLT) is not a very accurate diagnostic test. We can only hope that in the future newly developed diagnostics or a highly advanced MRI called an MRN (Magnetic Resonance Neurography) will show the nerve in detail, and this will inform a broader spectrum of the medical community of this disorder and result in a quicker diagnosis.
Why can’t they just remove the nerve?
The pudendal nerve plays a vital role in everyday bodily functions such as urination and defecation and therefore cannot be cut or removed.
How did the pudendal nerve become damaged or entrapped?
No one really knows for sure, but many sufferers have had pelvic surgeries, disease or trauma (hysterectomies, hernia, childbirth, endometriosis..etc) to the pudendal nerve area in which it is possible the nerve or surrounding structures were damaged. There is also a theory that the sacral ligaments that cross over the nerve in the lower spine become closer together as we age, and this crushes the nerve. Some sufferers could have a bodily structure that predisposed them to this disorder. For instance, they may have a longer than average pelvis which puts more pressure on the area. Physical abnormalities such as the nerve being displaced or growing on a ligament have been discovered during pudendal release surgeries. It has also been noted that people who bike a lot tend to suffer from pudendal problems. The forward leaning position of the body while biking, as well as the intense pressure placed on the pudendal area during biking could predispose a person to pudendal pain.
Why are certain activities so painful for the sufferer?
Certain positions of the body like sitting, stretching or squatting can stretch or put pressure on the already damaged nerve, causing even more pain. The main activities that the pudendal nerve patient should avoid are sitting, biking, lifting, pushing, pulling, squatting, vacuuming, and stair climbing. It is important to note that the activity may not be painful at the time. Most sufferers will develop an increase in their pain AFTER these activities and may feel a serious increase in pain for days.
What treatments are currently available?
The first step is to avoid ANY activities that increase the pain. As difficult as it may sound, it is extremely important that the patient have a trial period of a few months without sitting, lifting, climbing stairs..etc.... before trying more invasive treatments. If avoiding painful activities does not decrease the pain, a series of pudendal nerve blocks may be tried. Pelvic floor physical therapy has helped some patients greatly. Anti-inflammatories, muscle relaxants, opiates and some epileptic medications are of some help, but it is important to understand that nerve pain is very difficult to treat with pain medications. Surgery for this condition is in it’s infancy and not practiced by many surgeons in the U.S but has shown success in some cases. It is EXTREMELY important that the patient receive their diagnosis and treatment from a physician who specializes in pudendal nerve problems. It is not unusual for a patient to have to travel a considerable distance to receive proper treatment.
Why is my friend or relative so depressed or frustrated?
Please try to imagine the impact of serious chronic nerve pain, and this diagnosis in particular. Think about the things that are most important to you. What makes life worth living? Your career? Your love relationships? Your children? Your hobbies? Maybe you like to travel? Garden? Go to the movies? Hike, ski, or exercise? Every one of these activities is severely restricted, limited or downright impossible with pudendal problems. How would you make a living? How would this impact your relationships? Your quality of life? Your hope for the future? Imagine the impact this drastic change in your quality of life would have on your mood. Now try to remember the last time you felt serious pain; a toothache, a broken leg, kidney stone... etc.....We're you anxious? Depressed? Scared? Couldn't wait for the pain to stop? Imagine feeling that pain EVERYDAY. Think of what your friend or relative was like BEFORE they had this pain. I bet they were vital, productive, hard working citizens. Now they wake up everyday to serious pain, and every night they desperately try to fall asleep with serious pain. Their prognosis is unknown. There's no end in sight. Simple everyday bodily functions are extremely painful. They have to become dependent on other people for simple everyday chores. Their friends and family don't understand, and their local medical facility is uninformed. Most medical treatments for PNE are considered experimental and of unknown benefit. Sound depressing? It is.
What can I do to help my friend or relative?
Try to understand how you would like to be treated if you were in this situation. Acknowledge they're in pain. Try not to minimize their predicament. Ask if you can help them around the house, or if they need anything. Please don't say "at least you don't have cancer". There is a "c" word worse than cancer....that word is "chronic".
Thank you
List of Positive Coping Mechanisms for people with a chronic illness.
Everyone copes differently. How a person copes is closely related to the quality of your support in addition to personality and your current situation.
There have been studies showing that having a better positive/fighting attitude can actually have better medical outcomes.
Facing the reality of your illness This is essentially the opposite of denial. Being in denial is OK for the short term, but facing the situation is better for long term coping.
Maintaining hope and optimism.
Proportion and balance means that a patient, ideally, should be upset to the degree that is proportional to the reality of the situation. This means to not over exaggerate or under exaggerate your symptoms and how it affects your life.
Expressing your emotions means expressing negative emotions as well as positive emotions. Expressing all emotions, whether "positive" or "negative"will help you better cope, which can also help the immune system. Keeping anger or frustration in, can make you physically sick.
Reaching for support
Adopting a participatory stance This means participating in treatment and decision making, asking a lot of questions and changing one's lifestyle beyond what the physician recommends. In short, empowering one's self.
Finding a positive meaning.
Spirituality - You can be spiritual without being religious. Spirituality means worldliness. If a person is able to have some spirituality and/or faith/religion, studies have shown that this can improve a persons well being, attitude and good overall outcome. Maintaining self-esteem This can be done by using friends, family, colleagues and other forms of maintaining a healthy self esteem.
