Everything about diagnosis – or how to survive the end of the world

The beginning is different: sudden, when it is difficult to stay on your feet after waking up, and in the form of slowly increasing weakness, which makes it more and more difficult to catch up with the bus. When a diagnosis is finally made, no one is prepared for it, not even those who have spent months wandering around the doctor’s offices. At a time like this, usually it is not known what to do next, how to live.

Patient stories are similar scenarios. Oh, you led a normal life, made plans, made decisions, and suddenly, like a bolt from the blue, a punch, a diagnosis is made. Hundreds of questions run through the mind, because each end of the world is somehow signaled, something foreshadows it. In the catastrophe movies you can see THIS coming gradually, the tension building up. Perhaps in the case of MS, more frequent bladder infections were a prediction of catastrophe? Maybe the fatigue that hit us suddenly and stuck into the armchair, even though we were not overworked at all? Maybe dizziness or problems with eyesight that were not the result of too much work at the computer? And if someone had already said: you will be sick, terminally ill with multiple sclerosis, could anything be changed then? Somehow postpone fate, weaken the first blow?

Hit

The fate of Troy, foretold by Cassandra, teaches, however, that knowledge does not help much, does not change habits. Even terminally ill people find it difficult to change their habits, even for example to quit smoking. MS doesn’t feel so real; after the first shock, when everyday life returns, medical recommendations often fade into oblivion. What recommendations? Most often, these four are basic: avoid infection, high temperatures, stress, fatigue. These factors can cause, if not a relapse, then certainly an exacerbation of symptoms. As a fifth rule, some people argue that vaccinations should not be taken, as they affect the immune system and can provoke an adverse reaction to it.

Therefore, it can be assumed that the knowledge about the possibility of getting sick would not change much. The situation is different with the efficient diagnosis. It should affect, for example, the rapid introduction of immunomodulating treatment, slowing down the progress of the disease. In line with research and global trends in the treatment of MS, these preparations are administered to patients as soon as possible, often after the first line and diagnosis. In Poland, the situation is different: diagnosis is not so efficient at all, rarely follows the first line, and immediate initiation of immunomodulating treatment is practically impossible, unless the patient belongs to wealthy people and is able to pay for the treatment, the monthly cost of which is estimated for about PLN 4000.

So what happens to a newly diagnosed patient in Poland? Well, most of the time he takes the discharge letter from the hospital and goes home with him. From now on, he has to deal with himself. Moreover, the methods of giving a patient a diagnosis can also vary. Not surprisingly, doctors are also not prepared to deliver bad news. Medical academies don’t teach that; the psychology course is short and usually not the most important in college. Meanwhile, telling someone that he or she is terminally ill mentally burdens the doctor himself. Some American clinics run special courses teaching how to talk about difficult things. In the process of learning, future doctors “impersonate the patients”, which is to help them fully feel the importance of each spoken word. Specialists in difficult fields of study themselves can also count on the support of a psychologist-supervisor.

Of course, there are times when things are more difficult than giving information about multiple sclerosis. MS is an incurable “only” disease. However, according to patients’ experience, doctors are afraid of such conversations. – I was given the diagnosis in the corridor simply by handing over the excerpt. It was like a bludgeon to the head. Nobody even talked to me. I was sent home as if I had the flu – says Joanna.

It’s a mistake!

Patients also discover the diagnosis by accident, while talking to a nurse, browsing hospital records or from other patients in the corridor. Meanwhile, even skilfully and empathetic information can be the cause of trauma. It is even stronger because the diagnosis is heard by a person aged 20-30, who dreams, makes plans to “conquer the world”, for whom everything seems to be at hand. The sudden clash with reality can be especially painful then. Older people, that is more mature people, with a stable professional or family position, experience the crisis much easier. This does not mean that their adaptation to life in new conditions is easier, but it occurs much faster.

This is important because newly diagnosed patients can count only on themselves and their loved ones. Psychological support is sometimes unavailable, because usually such services are either not available or the patient does not want to use them, because he is afraid of the reaction of the environment. Only some and it is accidental, because few neurologists inform about useful contacts, incl. about an association where they can benefit from. The Internet has been improving the situation for several years. A sense of community is born in the network, they create virtual support groups. The Internet plays an important role, ensures anonymity, and the majority of newly diagnosed patients are rather reluctant to disclose their disease for fear of being rejected by the environment.

No wonder, the diagnosis does not reach their full awareness right away. Not only does it fall from the sky, it is also “pointless”, there is no logical justification, “we didn’t deserve it.” In the East they say “inshallah”, while we Westerners are desperately trying to justify what happened. We like when our lives are governed by a certain order, because we can influence it. Faith can help, but faith is too weak to deal with a catastrophe.

Wonders of the whole world

Since the occurrence of the disease cannot be rationally explained, the patient, by denying the diagnosis, tries to get to other clinics, other specialists, in order to find out “what is really wrong with me?” This phase, depending on the patient’s personality, may last several months or several years. Sometimes it passes imperceptibly into another, when the fact of the disease is no longer denied, but only incurable. The patient, often supported by his relatives, visits all possible miracle workers, takes the weirdest preparations, and undergoes the most exotic therapies. Depending on the current fashion, he eats only meat or switches to vegetarianism.

It is not so bad when the methods used turn out to be harmless and inexpensive. Swallowing vitamins can improve your well-being, if not physical, then at least mentally, because you do something for your health. Unfortunately, some of these miracle remedies can turn out to be detrimental not only to your wallet but also to your health. The MSIF MS Treatment and Management publication recommends that you use your common sense, seek information from people who have already used a given treatment, and look at the financial and health costs of the proposed treatment.

Common sense, however, is not the strongest point of newly diagnosed patients who want to return to the state of innocence, the magical bliss before the diagnosis, at all costs. When the “miracle therapy” turns out to be ineffective, the patient experiences a crisis and begins … a new treatment. This process is difficult to stop. Worse, it deepens mood swings, each therapy started gives hope, and disappointment causes depression and a sense of helplessness. It is difficult to get out of this circle. It seems to the outsiders that giving up searching means giving up treatment and succumbing to illness. Meanwhile, it may signal the beginning of adaptation to living with the disease.

Another Giewont

Uma Aaltonen, a former MEP who has MS, accepts the disease as part of her person, quite unpleasant, but – as she says – there are sometimes more difficult situations. He does not deal with the illness itself, because he has no time. He is involved in life: professional work and work for others. This level of adaptation to living with the disease is not achievable for everyone. It requires a specific type of personality. It is easier for optimists and flexible people who can change either their life goals or the way to their goal.

Many patients, especially those with neurotic personality, only seemingly adapt to the new situation. In fact, they take challenges that deny the disease, try to live as if the disease did not exist, ignoring the threat, without taking into account the necessary restrictions. As if they wanted to climb Giewont along the same route they used before their illness, not accepting that such an effort could provoke a relapse. The relapse then also has psychological consequences, the depressed mood and the risk of depression return.

Does it mean that you should give up this symbolic Giewont? Well, not necessarily. But you have to find another way. And if it fails – another Giewont. Often, after all, it is not only illness that forces us to change our goals in life, but it is decided by chance or other life circumstances. The problem is not to leave this choice to chance, to still decide for yourself about your fate, to be able to find your strengths. Then the temptation to look back, to live with an eternal sense of loss, the fact that “it used to be better” disappears.

People who have succeeded in the difficult art of learning to live again used to say: I have MS, but MS doesn’t have me. ” I have MS just like I have gray hair, wrinkles and stiff legs. But I am not an arm or a leg, I am a person, a whole, and this is priceless.

“10 rules of living with MS”

1. Be well informed

The diagnosis causes shock, sometimes anger, and raises questions: “Why me?” The best weapon against these negative emotions is knowledge. You need both practical information such as: what to avoid to avoid exacerbations? How do I recognize my symptoms? Will I be able to continue working? How to learn to live with MS? All this information can be provided by both the attending neurologist and PTSR.

2. Listen to your body

If you have relapsing-remitting disease, your symptoms will keep coming and going. You will have better days and bad days. Your body knows this and tries to tell you when to slow down. Learn to listen to him. If you feel tired, take a rest, if the heat is bothering you, go to the shade, drink a cool drink.

3. Remember, you are the same person you were before the diagnosis

People who are chronically ill often see themselves through the prism of the disease. They don’t think of themselves as a person, but as someone with MS. They are also convinced that they are perceived by those around them. Meanwhile, diagnosis does not change a person, life can still be full of plans and hopes. No one, even healthy ones, can be sure of the future and everyone should be prepared for changes. A painter who has lost his eyesight can become a sculptor. So change what you can, accept what cannot be changed. Remember! You have MS, MS doesn’t have you.

4. Live healthy

MS does not protect against other diseases, such as high blood pressure, diabetes, and cancer. It is much harder to live with a few chronic medical conditions. Quit smoking, eat sensibly, try to exercise regularly to maintain a proper body weight and good muscle condition. Try to treat infections quickly. Also, do not forget about the checkups that will help detect other diseases early.

5. Control your mood

People with MS often suffer from depression as well as mood disorders. It is usually manifested by depressed mood, loss of appetite, trouble sleeping and concentration, loss of interest in things that used to be enjoyable. Fortunately, depression can be managed with proper treatment. Don’t underestimate depression, take advantage of treatments that may help.

6. Involve the whole family

The disease also affects your loved ones. Talk to them, engage in actions that should be taken. Ask for help. Share your current responsibilities. The most important thing is to communicate openly with both your partner and the children. Paradoxically, the disease can make your bonds stronger, make your children mature faster and make them feel responsible for the home. Make sure you give them adequate time to take on new roles.

7. Create your own help network

People with MS need access to medical and social services and assistance programs. Find and record institutions or persons in your area that provide such support. It is better to know where the poviat family support center is, how to order a nurse home visit, where there is an adapted swimming pool, or how to arrange transport for a disabled person. Thanks to your own support network, you will be able to lead an active and independent life.

8. Plan your future

Just because you have MS doesn’t mean you have to give up your dreams. Most, if not all, goals are still achievable. Decide what is most important to you. Do not give up if the way to achieve this goal is closed so far. Be creative, think about how you can achieve the same thing in another way. SM is not the end of the world, there are much bigger tragedies, such as giving up dreams or looking back at the world of abandoned hopes.

9. Stay optimistic and in control of your life

What next after the nightmare of diagnosis? Well – you have to live. Maybe not everything will be as we imagined, but there are still things worth knowing and experiencing. Think about what you have achieved today. What’s important to you? Every day is a gift from life. Be positive, keep a sense of humor. At least once a day, find reason to laugh. Spend more time with people who put you in a good mood. Learn to accept your limitations, but also discover your abilities.

10. Don’t get discouraged, fight for yourself