Rethinking can lead to paralysis
Paraplegia as a critical life event
The onset of paraplegia, regardless of its cause (accident or illness), plunges the person affected into a deep life crisis. Unpredictable or plannable, like out of the blue it invades and overwhelms people. From one day to the next, in one fell swoop, normal life, normal human reality, is massively called into question. Everything that was familiar, known and controllable up to that point no longer applies. Nothing can be taken for granted anymore and as it was.
Questions that the paraplegic person has to deal with
- Can I continue to live as before?
- Are work, home, interests or hobbies handicapped accessible?
- How will life partners, parents, relatives and friends behave?
- What will happen to my future planning?
- How can I cope with the resulting dependency on other people and technical conditions?
- How can I still accept my body now, when I sometimes no longer feel it, when it looks different?
A patient has to deal with these or similar questions on a daily basis, unprepared and very closely.
This is particularly serious for most patients in the area of everyday care and self-care: bladder and bowel control are very often disturbed. The importance of these functions is now increasing by leaps and bounds. For most patients, the dependence on assistants for purging and urination or the fear of leaking at an inopportune moment is particularly embarrassing for most patients.
The person as a whole is hurt
The effects of such an event affect people in all areas of their existence, physical, emotional, spiritual and social: with paraplegia, the person as a whole is injured. As someone who is not directly or indirectly affected, one can hardly imagine how fundamental such an existential shock is. At this point it should be explained and clarified, and thus understandable, how people react to such a shock and how they can cope with it in a lengthy process.
The extent of the mental stress
These massive physical (physical) and psychological (emotional) changes usually lead to increased sensitivity and increased fear of new injuries: almost everything is experienced as threatening. The affected person is badly shaken, self-confidence and trust in others and in the world suffers. Accusations, anger, anger, hatred, destructive tendencies up to suicidality (suicidal thoughts) are often the result.
Body and soul need rest and time to mourn the losses suffered. This grief work is a necessary prerequisite in order to be able to take a critical balance sheet and to find new paths and goals. This also means that these emotional reactions, which seem unusually violent to one or the other and may be strange to you, are not an expression of something “abnormal” or “sick”, but rather completely “healthy”, normal reactions to such an altered one Situation necessary to accomplish the required adjustment.
The acute phase
What is this process like at the beginning of the paralysis? In the so-called acute phase, the patient lies in a hospital bed, in the event of an accident presumably in the intensive care unit, in the event of illness possibly also in the normal ward. Only a few people realize immediately after the onset of paralysis that this is a relatively final and
drastic change in life. At this point in time, most of them are still hoping for a cure and thus for restoring their previous and accustomed physical condition. This initial hope is often nourished by the fact that surgical interventions such as z. B. the stabilization of the spine has already taken place or is still to come. Sometimes the treating physicians either give hopes or only vague statements about future developments. Often, however, the person concerned is only too willing to overestimate all positive aspects.
The lying phase
After surgery or in the case of conservative healing of bony injuries to the spine, which is becoming increasingly rare, the acute phase is followed by the so-called lying phase. As a rule, at this point in time at the latest, the patient is in a cross-sectional center. From the bed he can watch his fellow patients and is confronted with his own situation more and more.
In these two phases, the patient who was previously healthy inevitably takes on the role of a sick person. So he goes from being healthy to being sick and has to learn to be passively cared for. This is even required of him. However, dealing with this passivity is not easy for many. You feel dependent and at the mercy of the treating team
Shame and helplessness to have to seek help with everyday and most intimate tasks such as emptying the bladder and bowel. Slowly they realize the loss of mobility, sensitivity, independence and privacy. However, this growing insight into reality is repeatedly thwarted by hopes for improvement
or even healing.
The mobilization phase
Thanks to today's surgical options for stabilizing the spine, the reclining phase now only lasts a few days or a few weeks. This is followed by the so-called mobilization phase. Here the patient has to give up his previous passive role as a sick person and take on a new role, that of the active disabled person. Only now does the concrete meaning of the disabilities become fully visible, tangible and tangible for him. At the same time, active participation, motivation and initiative are increasingly required of him. He should understand the new situation as a challenge and accept it. On the one hand, the patient is now “freed” a little from his dependency, on the other hand this means the end
the "closed season" but also a painful realization and an increasingly emotional confrontation with the new situation. The path of mobilization takes place in small steps up to all-day wheelchair exposure.
"Outer" and "Inner" coping
This description was the description of an external process, the phases of which were primarily oriented towards the medical-rehabilitative requirements of the treatment. The so-called inner phases of coping with mental disabilities now run parallel to these outer phases. Patients in this phase often do not recognize themselves, do not understand themselves or cannot explain their feelings or behavior. If we want to describe the inner process of coping with its various phases in the following, we must of course also warn: no two courses are alike, there is great individual leeway, and consequently no patent remedies are possible. People are different even before their paraplegia and after they have been paralyzed too. Paraplegia does not make people the same.
The phase model of coping
As an example, I would like to compare the mental processing of a paraplegic person with a phase model that is very well known in science, which at first glance may seem exaggerated or inappropriate: the phase model of dying, as Ms. Elisabeth Kübler-Ross has learned from her interviews
Dying has formulated.
"The fall from normal reality"
The parallels between the phases of coping with a disability of paraplegia, the phases of coping with the diagnosis of cancer or the phases of dying are very great. Gerdes described the psychological state of a patient who is being diagnosed with cancer as a “fall from normal reality”, a fall that necessitates a completely new search for meaning. Although he does not speak of dying, but of a diagnostic message, he presented the opening lines of a poem from 1001 Nights to his argument: “People sleep as long as they live. Only in the hour of their death do they wake up ”. (Gerdes, N .: The fall from normal reality and the search for meaning. In: W. Schmidt (Hrsg.): Beyond normality. Living with cancer. Chr. Kaiser Verlag, Munich 1986).
Even the paraplegic falls painfully from the dream world of his previously self-evident life and the integrity of his body, and wakes up. Like a patient who is diagnosed with cancer, he too has to face a completely different situation. Even if paraplegia has not meant a death sentence for over three decades, for the patient it does mean that life in its usual form has ended. This requires an extremely high level of adaptation and renunciation in order to be able to even imagine a new life after this "little" death or to dare to do it.
The phase model from Kübler-Ross
Kübler-Ross has described a phase model of dying that is necessary for acceptance
of dying. These phases are:
- Shock and bewilderment with denial of the situation.
- Anger and blame as the second phase.
- Bargaining for recovery is the third phase.
- Depression, dejection and withdrawal, possible thoughts of suicide.
- Finally, sometimes, but not always, the acceptance of the situation.
Paraplegia as "dying the old existence"
If you replace “dying” with “paraplegia”, this model certainly applies to understanding the psychological coping with paraplegia. The mental processing of a paraplegia does not have to take place exactly in this order, phases can be repeated or skipped, it is not a mechanical model. There is only one indication of the diverse emotional experiences and reactions. As I said, the order and duration of the phases can vary widely and most of the time the last phase, which is the acceptance phase, is only reached late during the hospital stay or afterwards. This is often also dependent on the social and family situation of the patient and / or his personality.
Phases of mental coping with paraplegia
Shock, bewilderment, denial
In the first time after the accident, the patient is not only physically but also mentally shocked. He cannot grasp the scope of the consequences. One often feels that he does not yet understand his handicap. He believes whatever you tell him is a misdiagnosis. However, this attitude or lack of insight, which is unrealistic from the perspective of the practitioner, corresponds to a psychological protective mechanism that always intervenes when the unbearable or incomprehensible threatens: this protective mechanism is the denial of painful reality. In most patients, this phase of total denial soon turns into a second phase in which the current situation, the paralysis, is perceived and accepted, but there is firm belief in future improvement. The patients are often supported by relatives who are too compassionate and who are busy collecting examples of cases that have gone well and awakening unreal hopes. One of the patient's ideas about a life worth living is often also and above all the idea of the integrity of the body, which alone guarantees that all goals will be achieved. Anyone who doubts the hope of recovery will be turned away and declared incompetent. During this phase, there can often be tension with the practitioner if the patient would do everything for recovery, but not for a life with a disability.
Coming out of this phase, the patients often tip into an acute phase of grief, which often shows the picture of reactive depression or angry irritation. Nothing seems sensible or possible any more. The patient is ready to give up, possibly even to kill himself. The mood is bad, the will to cooperate is paralyzed, attempts to encourage people are angry or sadly rejected. However, this period of mourning is an absolutely necessary one
Process by which the patient seeks new goals and meaning in his life. In order to be able to plan, he has to draw a realistic balance sheet and that is bitter. So it would be rather unnatural if patients did not allow this phase of grief or always tried to cover up. The balance that the patient has to draw when he comes out of the shock and becomes aware of the changes concerns different areas:
- Initially, the patient hardly has any command of tool functions (depending on the level of paralysis) such as B. Grasping or holding. Independence and autonomy are massively impaired, he needs help with the most elementary tasks such as elimination, dressing and undressing, mobility.
- His body feeling is completely changed, as is his ability to express himself in posture, gestures and actions.
- The doubts about one's own fullness plunge the patient into a deep crisis of self-worth, in which feelings of meaninglessness and worthlessness, inferiority, dependency, dignity and loss of intimacy in many cases give rise to the thought of suicide.
Grief work as a prerequisite for a new life: acceptance
The paraplegia means the end of life in its previous form and the acceptance of this “little death” is a necessary prerequisite for a new beginning. The mental mechanisms of coping with paraplegia and coping with a diagnosis of cancer or dying are almost identical. As a result, these phases and the associated feelings (as already mentioned at the beginning), as difficult to understand or bear as they may be in individual cases, are expressions of normal psychological reactions. They are not in themselves an expression of mental illness.
It is often a lengthy, difficult and very painful process, repeatedly accompanied by setbacks and emotional breakdowns. Some changes are often too small to be perceived as real progress straight away: “Progress is a snail”. Grief work is the prerequisite for the fact that what has been lost can be internally processed and mastered and that the space for new things is free. If you have had enough new experiences with your changed body and your new life, your mental state will stabilize. Of course you are not alone on this path, the therapeutic team, fellow patients and relatives can help you.
How can a psychologist help?
A psychologist can accompany you in this process, support you in your grief work, endure feelings, find new norms and values for new goals in life with you, encourage you to try out and rethink new behaviors in the new situation, e.g. with a wheelchair. There is no turning back from the changed situation with a recent paraplegia. Looking ahead is usually difficult, uncertainty, doubt and fear can make you feel insecure. With the help of discussions, this difficult situation can be dealt with bit by bit and perspectives can be increasingly developed. As part of a holistic care concept, relaxation methods and methods of psychological pain management can also be used.
Voluntariness and confidentiality
There need be no taboos: whether it is about family or social problems, sexuality or partnership, the psychologist is subject to confidentiality. It is just as important to emphasize that all discussions in the context of psychological care are and must be entirely voluntary. People only open up when they do
also want and the corresponding trust exists. The care is an offer and by no means compulsory care. This also means that you do not suffer any disadvantages if you vehemently reject a psychological conversation at the beginning, but want it at a later point in time.
Does it actually make sense to talk about your feelings?
"But I've never talked about my feelings, it's nobody's business either." Many patients argue in this way or similar, expressing their skepticism towards a conversation with a psychologist. Or they say in a general sense: "I'm okay in my head, I only have it on my spine". It's just like this: depending on your personality and how you have dealt with stressful situations, borderline experiences and conflicts so far, you will initially behave as you are used to, even in this extreme situation.
Two fundamental personality differences
Are you more of a "denier" or are you used to allowing and enduring feelings, including unpleasant feelings? People who have never sought help, who “cannot go out of their way”, who reject and negatively evaluate their own need for help and dependency, see them as a personal weakness, will suffer quietly in this situation too, be speechless in their need and Helplessness. People who have experienced that they could get help and who could accept it, who are familiar with dealing with feelings, who can express and express feelings, are more likely to be able to accept therapeutic help.
Feelings always find their way
From our experience it makes sense to allow feelings, because you have feelings even if you do not perceive or express them. Even if you try to push away or split off your feelings, they still have an effect beneath the surface and there is a risk that they will come to the surface again elsewhere, e.g. B. in
In the form of pain or in the form of depression. If someone tries to "eat into themselves" the feelings, it can lead to self-damaging behavior: You let yourself go, the body becomes indifferent and is neglected, alcohol, drugs or food serve as substitute satisfaction.
Does every paraplegic need a psychologist?
It is often said of psychologists that they are basically crazy themselves, and that everyone who has to see a psychologist is so too. Both are usually wrong. Even in the case of coping with paraplegia, it is by no means about being insane. The feelings and emotional reactions, as violent and unfamiliar as they may be, have something to do with the immense adjustment efforts and the great grief work that is a prerequisite for a patient to be able to face the challenges of his new situation. Of course there are patients who can cope with this challenge within the framework of a good social and family embedding, who are so calm in themselves that they do not need any therapeutic support. However, there are many who can benefit from an offer to talk to and experience it as a help.
Further questions from those affected
So now I am paralyzed ... Everything is so difficult, why is nobody helping me?
The clinic is an extremely exceptional situation for a person who is freshly paralyzed. Especially at the beginning of the treatment, you may be completely dependent on outside help, you may have to be cared for like an infant in almost all areas of life. It is often difficult to endure and accept this state of affairs. The aim of the treatment is to make you as independent as possible. This means that the existing and potential residual functions must be activated and trained. This tedious study and practice often leaves the patient desperate and angry. Two examples:
- "Why do I have to struggle with my wheelchair when someone else could push me so easily"
- "Why should I laboriously put on my jacket for half an hour every day when others can do it for me much faster?"
Do you want to annoy me? I'm not doing that.
Nobody wants to annoy you or even torment you, it is all about helping you to achieve the greatest possible independence. No patient is happy with this situation, but in retrospect many are grateful to be able to participate largely independently in active life again later. Outside help, which does everything for you and apparently makes it easier, is not always a real help. It is possible that you will later decide to have yourself help to save time, but it is important that you can help yourself, for example in an emergency.
But with this you have to cope with the temptation to take advantage of the helpfulness and compassion of others, which is often based on the bad conscience of the non-disabled, and to allow yourself to be "mothered", even where you, as a disabled person, are capable of personal work and are able to.
It's easy for you to talk, you are not in my situation.
All practitioners, regardless of whether they are doctors, nurses, physiotherapists, occupational therapists or psychologists, have ultimately gained their therapeutic knowledge from those affected themselves. Many things can only be addressed or demanded because we learn from the knowledge or experiences of other patients and we adopt these experiences.
Contact to "old hands"
It is often helpful to talk to fellow patients who have been paralyzed for a long time, who have already had this experience. Such fellow patients, especially if they have accepted and coped with the disability and exude a positive outlook on life, are often more helpful than all talk from us who are not affected because their experience is more authentic. The statements made by an affected person are usually much more credible than those made by the treating team and can also be more easily accepted by the patient. It is therefore important to seek contact with fellow patients and to exchange ideas with those who are “in the same boat” with you.
Do I Really Need Psychiatric Drugs?
As mentioned above, it is perfectly normal for you to experience repeated phases in which you are discouraged, depressed and lacking motivation. Such phases, which are called adjustment disorder or reactive depression in technical jargon, are completely normal and necessary in order to cope with the disability. (If you find such a diagnosis in your medical record, doctor's letter or the like, don't worry. It would be completely surprising, almost abnormal, if you went through this massive life crisis without any change in behavior or experience. Because “normal” reactions also have to be are sometimes mentioned as a diagnosis so that your insurance provider pays the treatment.) However, if these phases last too long or are too intense and not caused by e.g. B. psychotherapeutic conversations can be tempered, it can be quite useful, z. B. Administer an antidepressant so that you can actively participate in the rehabilitation program. This may break the vicious circle in the sense that you are depressed because of your helplessness and remain helpless because of your depression.
How long do I have to take antidepressants, are they addicting?
The duration of the prescription for such a drug is certainly dependent on the person. For some people, a few weeks are enough for them to have stabilized again to such an extent that they can do without the medication, for some it makes sense to take them for several months or years. Otherwise there would be the danger that the depression would disappear
in the form of physical complaints e.g. B. expresses pain, which would then be treated with painkillers. However, some patients notice that painkillers can numb not only the pain but also the mood and they then take the painkillers not only for the pain, but above all for the mental upsets. And so there is then a great danger of dependence. Antidepressants, on the other hand, are not addictive!
How long will it be before I feel like "the old one" again?
We asked patients how long it took them to return to a certain “normalcy”. On average, the patients stated one to three years, sometimes longer, until they were able to live independently and actively again and without endangering their health. The attitude towards each other turned out to be an important factor
Handicapped in front of their own disabilities.
How have I thought about the disabled myself so far and what effects does that have on my self-esteem now?
You are disabled yourself. The way you see yourself as a disabled person has a major impact on your self-esteem, the way you like and accept yourself, the whole process of coping with and coping with your illness. The way you see yourself now is often an exact mirror of how you used to perceive other disabled people
to have. Either you overlooked them, felt sorry for yourself, felt repulsed, thought handicapped people were parasites or were sure that you didn't want to live in their place yourself. Now that you are in this situation yourself, assume that others see you as a disabled person now just as you saw disabled person yourself in the past. This means that you may now have to change your previous opinions and attitudes. This may be a difficult process, and it is often best managed by talking to friends, family, or the treating psychologist. However, it is absolutely necessary in order to achieve a positive and constructive self-esteem as a disabled person.
family and friends
Paraplegia as a crisis also for those affected
After paraplegia has occurred, family and close personal friends are usually also in a phase of shock, in which the extent of what is happening cannot be fully understood. Just like the person concerned, they are stunned by the situation and cannot believe that this change is supposed to be final. As a co-affected person, you too are thrown into a life crisis, comparable to that of the patient (LINK) and are just as challenged and overwhelmed by this new and unknown situation as the patient. You too often need special support and support.
Questions that those affected have to deal with
Although you are not directly affected, the spinal cord injury usually affects you in many areas of daily life and raises questions such as the following, which relatives or life partners often ask themselves very soon after the onset of the paralysis:
- Can I continue to live with the person affected as before?
- Are the apartment, common hobbies and interests wheelchair accessible?
- How is my paraplegic partner coping with the situation?
- What will happen to our future planning?
- What changes do I have to adjust to and get involved with?
- How do I deal with these changes?
- What will change in our coexistence?
- How do I keep this up? How am I supposed to do that?
Phases of mental coping
Shock and bewilderment
After the onset of paraplegia in the so-called acute phase (Link), shock about the accident or illness and fear of the paraplegic dominate the experience. You are stunned by the mountain of changes and tasks that await you. Often you cannot imagine how all of this can be achieved.
Hope and denial
Usually the threatened and anticipated change is so frightening that it is obvious to believe in a misdiagnosis or to hope for a cure. Often there is a desperate search for cases in which other patients have "got back on their feet". Often cases of stroke patients are used because of their ability to walk after initial
Having regained time in a wheelchair and it is forgotten or overlooked that a stroke cannot be compared with paraplegia. Sometimes the "rainbow press" stirs up such unrealistic hopes by repeatedly reporting on the alleged healing of paraplegic patients (Link). Something has to be done, it can't stay that way: thoughts like this or similar often dominate the feelings of those affected in the beginning.
Stages of grief
Grief, depression, anger or assigning blame are emotional states that occur when these mostly unreal hopes and wishes are not fulfilled. This phase, which can be described as grief work and which affects the relatives in a similar way to the patient (LINK), is made even more difficult for the relatives because they have to carry out the necessary planning for the time after the hospital stay together with the patient. Relatives often have to find new, wheelchair-accessible living space, and financial problems and worries make the situation even more difficult. Often the relatives have to find their way into new roles, they have to take on tasks that were previously regulated by the person concerned, be it questions of the household, raising children, maintaining social contacts or finances.
Especially when for the first time in life you seem to be so obviously dependent on outside help (going to the social welfare office, prospect of the need for outside care), this is a difficult thought for many and "gnaws" at your own self-esteem.
Such changes and additional burdens for those affected can lead to the limits of resilience, where one actually needed time and rest for one's own grief work and the adjustment process. Please do not expect any quick miracles here either. Like the person directly affected, you too will need a lot of time, support and maybe even professional help in order to be able to come to terms with the changed situation.
Questions from those affected
How can I help the person affected?
It is important that the person concerned receives the familial, friendly and social support that he needs so much in this crisis situation. This includes regular visits and open discussions about the changed situation. As a relative, you should show understanding for the patient's behavior and experience, which can sometimes be difficult to bear. It is important to include the person affected in life and in the decision-making processes outside of the clinic in order to continue to give them the feeling that they may no longer walk, but can still think and decide. With everything, however, it is important to be aware of your own limits and, if necessary, to get help.
Do I have to spare the person affected? Can I show him that I'm bad too?
Often the fatal situation arises that the relatives think they have to take care of the person affected and they would do this best by "pulling themselves together" and not showing their feelings. It can even happen that the patients themselves think they are should protect their relatives and should not burden them too much. Out of false consideration, each then plays something to the other. It would be more helpful for everyone involved to talk to each other - maybe even with a psychologist. Only if it succeeds, even the difficult feelings expressing, perhaps being able to grieve and cry together, can perhaps be laughed together again later.If such feelings have to be suppressed for a long time out of wrong consideration, this process consumes a large amount of energy and strength, which then no longer goes through the necessary adjustment process is available.
When is my help good and when is my help too much of a good thing?
If your partner is handicapped by a paraplegia, then it is clear that he needs help, as he can no longer do some things on his own. However, where he can be independent, it is important to let him have this independence or to encourage it. If a lot is tedious and takes much longer than before, please consider that your loved one has to learn and practice a lot again. "Mothering" is perhaps the more comfortable way for both sides, but it contradicts the basic idea of rehabilitation and reintegration into a life that is as active as possible.
I heard there is a new way to cure spinal cord injuries elsewhere?
We notice time and again that patients or relatives are concerned with this question, especially since such cases have been reported in the media recently. Such considerations are often made “behind the back” of the treating team, as those affected expect rejection or criticism from us treating them. Raising hope is certainly a necessary and helpful process of coping. Unfortunately, however, until now it has been completely false hopes that the media have portrayed in sometimes irresponsible and exaggerated ways. There is currently no way in the world to cure spinal cord injuries. In every paraplegic center you will hear from patients who got up and running again, but in these cases either the spinal cord injury was not so serious that the nerve conduction could regenerate. In any case, however, this is not a new or special treatment method that is not known to us or cannot be carried out. However, if you are unsure or irritated, please speak to the attending physician to clarify such questions.It would be a shame if you invested a lot of time, energy, or money and then ended up disappointed.
Do I also need psychological support?
Psychological help is not a must, but an offer and a possibility. Psychological help is not a shame and has nothing to do with being insane. However, as is well known, the emotional burden on relatives is usually just as great as that of the patient, and sometimes even greater. There is a risk of overlooking the relatives in their distress
and leave him alone with his questions and doubts. Relatives who believe that they always have to be strong sometimes also need a place where they can talk about their own weaknesses and their own feelings in order to be able to recharge their batteries. When you have no one in your circle of friends and acquaintances with whom you are really open
and can talk honestly about everything, then please do not be afraid to seek professional help, be it the psychological service of a cross-sectional center, a counseling center or a resident therapist.
Dipl.-Psych. B. Drzin-Schilling
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