Understanding The Stages of Chronic Illness

As with any illness be it acute or chronic there are always stages that one tends to go through.   More often than not the person in crisis of a chronic illness is suffering the loss similar to a death.   Death of a former life they no longer have, death of sense of self and worth, death of hope and confidence and more.  However, as with death there comes a rebirth but it takes time to get there.  One must go through the stages in order to learn to cope with their chronic illness.  I know, I have  there myself.

Let’s take a look at the first stage:

Stage 1

Crisis – This stage can be very frantic.  The person is seriously ill and terrified.  They do not fully comprehend what is happening to them.  Physically their ability to meet the demands of daily life have decreased tremendously.  Mentally they find it severely difficult to comprehend daily life, instructions and often experience an overload of emotions.  They just do not respond like they used to.  The ill person tends to withdrawl into themselves and utilizes what energy they have in focusing on healing, getting better and the most of their energy is focusing on how to control their pain.  Confusion and disorientation sets in and the concept of “time” tends to slip away is highly common.  Panic and anxiety sets in.   Fear of being able to handle their family life, children, spouse, medical care, finances and so forth.  Taken away from the person is the ability to “handle it all” to barely handling one issue let alone dozens at a time.   Whoever the patients support system is, be it spouse, other family member, friends, will feel the stressful pressure and become anxious themselves, especially if they feel they must take on the full responsibility of picking up the slack of what the patient can no longer do.  Often the supporter will feel a sense of  “obligation” and to be highly supportive.

Strangely enough, most people perform very well under high pressure and crisis.  Sadly however, the primary person effected by the patients illness do not receive the proper support THEY need to cope.

Friends of the ill person will often respond with get well wishes, gifts, and cards.  This often is misguided and misdirected because the ill person more than not cannot appreciate their signs of affection and concern.  The patient during this stage actually will feel overwhelmed and burdened with the though of responding with proper thanks to their friends.  The best thing a friend can do is help the direct source of the patients support system such as spouse or family member in handling day to day issues of the medical system, incoming phone calls and so forth.  By friends providing support to the soul source of the patients support system that person can then focus better on their loved one.  The patient during this stage will often feel a bit of resentment to “get well wishes” simply because with the chronically ill this has no relevance in their life as with someone with an acute condition (a quick onset of an illness that does go away) does and will get well.

During crisis mode the patient can only focus on the onslaught of their physical and mental pain with only thoughts of surviving through it.  During this time the patient is engulfed in the fear of the unknown, what their future holds and all they know is their life as they knew it has been shattered.

Stage 2

Isolation – During this stage the initial on set of the illness may subside, however, they never fully are in recovery and the illness continues on.  The patient starts to realize that their illness is on going and chronic.  The thought of never having a full recovery is devastating.  This will cause the patient to become uneasy, restless and sleep is hard to come by.  They fear the outcome of their future, and it takes a major toll on the patients self image and self esteem.

During this time the patient become very anxious in dealing not only with themselves but with others around them.  This is understandable and semi justified.  Nobody but the patient can fully comprehend the devastation of their losses.  The more independent the patient is or was the harder the isolation becomes for them.  The family during the major part of the acute onset of the patients illness in stage 1 is now spent and exhausted.  They often realize the harbor some anger and resentment toward the ill person, are fearful and disgusted by the sick persons situation.  This is when severe isolation becomes prominent in both patient and family members and everyone starts to withdrawl into themselves as the realize life will not be the same.

During this stage friends tend to drop away and give up on the ill person.  Chronic illness is something that scares most people because after the initial onset friends find it too overwhelming a personal struggle with themselves to continue having contact with them.  It just takes too much of their time and energy.  This in turn devastates the patient by the apparent lack of concern shown by their trusted friends for whom they care about.  It is said “apparent” simply because more often than not the failure to contact the patient means that friends may care but don’t know how to act.  Friends also during this stage do not fully comprehend that the patient can no longer come to them for visits, gatherings and such like they used to or at all.  Friends will tell their sick friend “I miss you” yet never go to the source.  Once again this may apply to the friend not fully knowing how to respond.

The patient must ask themselves a very sticky question, especially those we talked about who were highly independent; how comfortable are you in asking for help?  This question generally shows itself during stage 2 of isolation, but actually they are part of everyday living for the greater majority of the chronically ill person.  The patient must learn to set aside being uncomfortable asking for assistance and allowing others to help them.  As with anything this take practice.  Often the ill person sees asking for help as a sign of weakness, failure and resulting in feeling guilty for even needing to ask for help.  Guilt even comes into play for the person in having an illness to begin with and negative feelings in regards to themselves surface during the isolation stage.

The isolation stage is a crucial time for communication and no blame must never play a part.  It is highly important during this stage for the patient to talk about their feelings in order to break the isolation phase.  Be prepared, for if the patient does open up to communicate for some time this will be all they can talk about and it’s the only way for them to work it out so the support system needs to be very understanding during this time.  The patient may experience even being tired of hearing themselves talk about it.

Stage 3

Anger -During this stage the ill person has been suffering severe physical and mental pain, anguish, upset, anxiety, fear, worthlessness and feeling helpless.  They all feel it being unfair, unjust, totally senseless being afflicted by their disease.  This stage often results in sheer rage in huge proportions and the patient often targets this anger towards themselves.  Suicides and suicidal attempts are often a dangerous reality during this time.  The feelings of despair are too overwhelming.

There are a couple of reasons why the patients targets themselves for these feelings.  First being it is almost impossible to be furious with fate;  there is no external opponent.  In order to provide some meaning for what has happened, many people irrationally conclude they have brought the disease upon themselves by being a failure or bad in some way or another.  The patient finds it difficult to keep clear that it is the illness that has disrupted their life.  The second reason for suicidal thoughts is that the illness breeds many feelings of helplessness, worthlessness, being a burden both physically and financially to those around them.  Chronic illness just cannot be “wished away” and their disability is a struggle each and every day.  The threat of a major recurrence or increase in symptoms may be a constant anxiety tucked away not far from their consciousness.  They often feel the underlying problem can’t be solved and believe it is their fault which results in severe unhappiness.  Sadly, the patient’s feeling of self blame is greatly reinforced by society.

Families are unable to help because they too are angry and at the patient.  Unfortunately family members may also as with friends drop off and away.  The changes in their life are directly attributed to the patient and not to the patients illness.  Even medical doctors have been known to display anger with the patient having a chronic condition they cannot cure.  Anger from a doctor directed at the patient from all sides is mentally understandable however is highly destructive to the patient.

Suicidal thoughts start worming its way into the patients mind.

Another huge problem during this stage is the family.  There is a massive amount of strain on them as well and the families who fare better are those who can understand that the sick person is not the same entity as the disease itself and they see that the whole family is in this together and are committed to coming out of it as well as possible.  Families need to seek out a support system for themselves as well so they can cope with their anxiety of what their loved ones chronic illness has brought to the table.

The stage of anger is the most hazardous to your emotional well being as the patient and the feeling of being trapped is strong.  Fear and anger bring a sense of loss and lack of control.  You can take back that control but it must be done in baby steps.  The primary reason for anger most often can’t be avoided.  This is not the time for anyone to be pointing fingers and casting blame towards oneself or others.  Placing blame does nobody any good.  The response must become “task oriented”.

Example: “Today I will do only one load of laundry, walk the length of a room, answer one email.”

Striving towards the goal(s) set, even in small doses helps subside the anger.  Trying to do things the way it was done prior to the illness is a sure fire way to set the anger off.  Patients, family, friends and others should all focus on the strengths that remain on the accomplishments that can still be achieved.

Stage 4

Reconstruction -The person afflicted with the illness may now be feeling stronger physically or have less frequent visits of their chronic illness giving them enough time to begin learning new living skills and functions.  Important decisions or new friends or other social contacts may come into play during this stage.  It is common to start to being having a sense of safety based on their new found skills.  The patients moods become lighter with more displays of being happy and the difficulties seems a bit further away.  The patient starts to learn the possibilities and limits of their illness and what can be done.  With the loss of friends or even family members along the previous stages the patient selects new friends on how well they react to the factors of their illness and even will seek out others with the same or similar condition on the basis of understanding.  This takes the pressure off the patient of having a friend who poses no demands they cannot meet.  The patient chooses wisely a friend who will not take offense of a broken luncheon date at the last minute and not take it personally that a prior engagement cannot be met due to a flare up of the person’s illness on any given time.

During this time the family of the sick person either adapts and establishes a new routine, or, it dissolves.

So, what exactly has been reconstructed anyway?  Well, you can guarantee it is not like the previous life prior to the illness.  There is however, the reconstruction of oneself as an intact human being.  The stage of reconstruction takes on many solid aspects, such as development of new found skills, hobbies, interests and such that are most important that holds great emotional value.  When how a person lived their life previously has been shattered into a million pieces by an illness, the patient fears that they may no longer be seen as a whole person ever again.  It is the renewed sense of self and image that starts the reconstruction process of the mind and body.

In most cases people do great for several weeks but as a chronic illness can do, it can flare back up or the patient is devastated by some incident causing a set back.  With each experience and trusting in their succeeding helps the patient with confidence in reconstructing their lives.  With each reprieve of their illness, the patient becomes more confident and when a set back happens while upsetting the patient now learns to find the strength to forge through it to get back to happier, new, reconstructed self.  In other words, there is light at the end of the tunnel even with set backs.  There is a life to be lived, yes, in a new way but life none-the-less and one that can be a happy one.

Stage 5

Intermittent Depression -As with stage 3 of anger where heavy depression was involved, now that things are looking brighter to the patient in stage 5, everyone is tempted to let their guard down, relax and may, therefore, be caught off guard when a significant depression rears its ugly head up again.  The freedom and happiness of the patient’s new found skills and life can give away to new feelings of total despair as the patient remembers just how simpler things were to do “back in the day” before their illness when everything was so much easier to handle pre-illness.  Nostalgia and grief may come together causing depression and discouragement.

Many people know just when to expect to run across these rough spots.  Things such as seeing their doctor who confirms their intuition that their or your condition is not approving or is worsening, appointments, dealings of having to give up driving, anniversaries of divorce or death, the specific time of the year the physical problems first occurred and the list goes on can often cause a set back of depression.  Counseling during these difficult times and set backs is recommended to help provide a new understanding of what all the feelings of loss are coming from.  With a renewed sense of understanding comes a new resilience; it does not cure or make the losses go away but gives you the tools you need to work through the depression.

With this intermittent depression a couple of feelings will surface.  The awareness of loss of function that  happens several times during the course of the day and ordinary living.  The other is the awareness of loss that brings on an image of what life would be like had the illness not occurred in the first place.  With these two combination’s depression is quite likely.  A vicious cycle if you will.)”

In this cycle a sense of self-punishing mechanism kicks in and indirectly causes the chronically ill person to self destruct in their own self worth, competence and confidence.  Thoughts of  “If only I didn’t have fibromyalgia (or other illness) I could still go hiking (or whatever activity)”.  “If only” statements are the main cause of this cycle.  They contain harsh self judgments and feelings of worthlessness.  Now, when in a happier state of mind when experiencing these feelings of loss try saying, “I really miss hiking, but at least I can take a walk today.”

When the cycle rears it’s ugly head, the soul become uneasy.  Family, friends and even doctors mistake the desperate pain of knowing one’s hopeful fantasies will not be realized for having a self pity session.  Saying things to the patient like “Just stop feeling sorry for yourself” so totally missed the pint that their illness is tragic.  it is extremely hard to have a sense of self when you’re depressed and are afraid that you will never again be of value to yourself or to others.  One of the key dangerous phrases to say to the patient during this time is, “Just snap out of it”, this will truly set them back.  Trust when I say there is nothing more in the world the ill person would like to do is just that and not feel the way they do.

Self esteem improves when the patient succeeds in gaining some independence and purpose back, whether the success is walking further that day or remembering an important event or task without being reminded.  Within this cycle, any unrealistic expectations you have for yourself can’t compete with the gratification of hard won success.  If family, friends and even the medical profession can and would appreciate the triumph in being able to struggle, you feel even more triumphant.  Those who wish you well generally make the mistake of praising a sick person for their progress without letting them know how difficult the ongoing battle against the force of their chronic disease really is.

It is normal for everyone to have periods where they are not up for any struggle in life.  However, as long as attention is paid to that struggle, getting through the day will happen.  We flounder when we set unrealistic goals, or can’t grieve for what has been lost and even cannot start each day anew.  Depression can be tackled despite the physical complications that attempt to take us down.

Depression is real and there is no shame in getting help!

Stage 6

Renewal -The feeling of sadness, your losses, never completely disappear.  Lingering about you, is a sense of regret for all things that have been lost to you.   Being proud of any achievement you accomplish is essential for retaining an active life.  If you have to use a wheelchair and you master it, that is something to be proud of.  This does not mean you have to like it, just be proud of your mastering it.  It is okay to dislike or resign yourself to the compromises you need to make to get on with your life.  Just know it is important for you to acknowledge that changes in life style and skills must be made.  Realize that your new skills will differ from before your illness and it is not the same as adjusting to illness.  This is not “giving in” or “surrendering”, consider it as self growth and creating new horizons.  Renewing oneself comes from the learning curve that shows us how to seize the moment of the present and throwing away the fear.

Discouragement breeds the feeling of being all alone and there is truth to feeling this way.  It is important to know that in many ways you are not as alone as you think.  There are people all over, maybe next door to you who have similar feelings at times.  There are also others who have the same or similar condition you have that do have comprehension of what you go through because they too are going through it.  Should disturbing thoughts wake you up in the middle of the night, just know there are others struggling with their pain.  Even if someone has the same condition as you, nobody can quite share your unique experience, but, there is a kinship and strength among us all who are no longer able-bodied.

Resources:  After the Diagnosis by Dr. JoAnn LeMaistre.

Never Give Up

When you get into a tight place and everything goes against you,

till it seems as though you could not hang on a minute longer,

never give up then,

for that is just the place and time the tide will turn.

~Harriet Beecher Stowe~