At the back of most people’s mind lurks a dark fear: that of being both seriously ill and totally alone. Indeed, we spend much of our lives trying to avoid such a fate. It explains why people rush into bad marriages, for example, have children they may not really want and put up with friends they no longer like.
People who never married, or never had children, assume that those who did are always loved and taken care of in times of need. This is a myth. People sometimes abandon their partner when that partner develops a serious illness. Ask those with years of experience, such as a family doctor, and they will tell you horror stories of a husband walking out on his wife the day after a cancer diagnosis, or a wife leaving her dying husband for another man.
Of course, some people are just selfish and uncaring. Others do care but cannot face sickness, vomiting and hospital wards. For many, the urge to run away is simply too strong. And, though their conscience may torment them, that is what they do. The problem is that we are only just emerging from the medical dark ages. We can prolong life and slow some diseases, but we aren’t yet good enough. And there are few things we can instantly cure. The result is people whose lives are saved but who remain confined to their bed for years on end.
Imagine a hypothetical situation. A 57-year-old man’s wife is diagnosed with MS, which leaves her bed-bound much of the time. For two years he struggles to look after her. On the dark, lonely evenings he ponders his future. Soon I’ll be 60, he thinks. Where is this going to end? My wife could live on for another five years, 10 years, who knows? Our sex life is over. Is this it? It seems like only yesterday that I was young and full of energy.
Then an attractive younger woman starts at his workplace. She seems so happy and full of life compared to his ailing wife. At first she is a shoulder to cry on; they go for coffee and he talks about his situation. A few weeks later, however, they start an affair. All the gloom and misery of the last two years drop away; he feels 18 again. Then she makes him choose: your wife or me.
When someone is ill, we develop all sorts of silly fantasies. We imagine they will be grateful for our help, that everyone will admire us for our sacrifice, that we and our patient will have lots of tender and intimate moments. In fact, carers are often taken for granted. Friends and neighbors, on the other hand, assume they are perfectly happy. And when people become ill, they tend to grow selfish. This is understandable. After all, they are usually frightened or in pain. Unfortunately, one kind of illness often leads to another. For example, they cannot get out of bed, which means circulation problems. Or maybe their physical illness leads to insomnia, depression and panic attacks. In short, the unwell can be hard work.
As for children, again there are no guarantees. Some never really bond with their parents and leave home as soon as they can. Others blame their parents for neglecting or ill-treating them in childhood (indeed, they may be in therapy for that very reason). And even those who do love and care about their parents still have lives of their own. For example, Kate lives in London. When she is 30, she marries and has a daughter. For several years they are a happy family and she feels blessed. When Kate’s daughter turns 18 she decides to work in New Zealand for a year. While there, she falls in love, marries and decides to stay. She and her husband have a child. Six years later, Kate’s husband dies of a heart attack. A year after that, she is diagnosed with breast cancer. Her daughter is upset and worried, but she has children of her own, with lives full of homework, parties and friends. She cannot abandon them to fly home to London for months, maybe even years.
It must be said, however, that some people would rather be on their own. Being dependent on those you love is itself a horrible experience. People often feel ashamed and embarrassed, even a burden. This is especially true when they depend on their children. Then there are those whose partner or children do take care of them but do so resentfully, constantly reminding them what a hassle it all is, how unhappy they are, and so on. Often, things start out well and then deteriorate. Over time, stress and resentment build, leading to nasty outbursts on both sides. In other cases, a partner or child simply lacks empathy; they do their duty, but in a cold and mechanical way, deeply upsetting their loved one.
Being dependent is frightening. People fear that their partner will have an affair (after all, what could be easier? You can literally find someone as you sit by your partner’s bed and swipe away at your phone). Others are themselves dealing with a dependent child or parent. Instead of looking after them, they now find the roles are reversed. And who will look after this person when they are gone?
Those facing illness feel vulnerable. Indeed, they are vulnerable. And this feeling is often intense. It taps into a deep, primal fear of being cast out. In our hunter-gatherer days being alone was dangerous. If you lost your tribe, you were sure to be killed by hunger or animal attack.
On a practical, mundane level, you need someone to do the shopping for you – or at least collect and pay for it. And what about the collapsed garden fence, or that draft that lets in ice cold air? Those who must rely on professional carers may have to wait a whole afternoon for someone to pick up their phone or replace a light bulb, not to mention help them to the toilet or fix them something to eat.
Money is another major worry. When you are ill, you cannot earn. You may receive state benefits, of course, or have health insurance, but these cannot always be relied on (government bureaucracy might be inefficient, or a new administration may cut your payments; as for insurance companies, they will look for any loophole to avoid paying out). Money usually runs low and you find yourself having to cut back in all areas, from food to heating, at the very time when you most need comfort.
More generally, there is no one there to fight for you. For example, there is no one to back you up when you ask the neighbors to turn down their music. And there are always people who will take advantage of the vulnerable. A professional career, for example, may steal food or even jewelry. When you complain, they put it down to your illness and confusion and assure you that you are mistaken. If a doctor tries to get rid of you, or tries to persuade you to keep taking something that makes you sick, there is no one to argue your case.
And of course there is no one to come with you to the hospital, or hold your hand when you are frightened. Having to book a taxi to take you for an operation is about as depressing as life gets! Neither is there anyone to take your mind off the illness. You may see a doctor occasionally, plus a nurse or carer, but these are professionals. They wear a uniform, which in itself reminds you of illness. And their conversation usually revolves around your disease. When someone is ill, they want to talk about other things. They want someone to bring the outside world into the sick room, to remind them that ordinary life goes on, that out there people are still arguing, paying bills, getting married, having children, and so on. And they want someone they can talk to about books, TV shows or movies.
How to Cope
First, it is important to learn all you can about your illness. Identify the experts in that particular field, read reviews of the best books and order as many as you can. Then read and make notes (buy a good quality notebook to write it in). Next, get online and join a support or discussion site. (Just be careful about the information you give. Remember, there are people lurking on such sites who pose as victims, befriend someone lonely, get their address and then exploit them).
Illness is miserable. And when we feel low we tend to neglect our body. This is a major mistake. First, you need to do all you can to help your body resist. You also need to avoid depression. Unless you are a very upbeat person, this may be difficult. Being both isolated and ill grinds people down.
Consider what you eat. A radical change in diet can do wonders not just for your physical health but also your mental health. Cut out soda, sugar, alcohol and refined carbs. Instead, load up on nuts, oily fish and fresh fruit and vegetables. It is also vital to get moving, preferably outside. Even if you only walk to the end of your street and back that is something. Natural light will boost your mood, and so will the sight of people going about their mundane lives.
Perhaps the single best piece of advice anyone can give is this: take everything one step at a time. If you don’t, you risk being overwhelmed (I have to pay my electricity bill, oh, and my tax, oh and that benefit form, etc.). Make a list of what needs to be done and tackle each thing in isolation. As you do it, put everything else out of your mind. Once it is done, tick it off your list and move on to something else.
It is also important not to allow pride to get in the way. People don’t like to admit that they are frightened, and they certainly don’t like admitting that they are lonely. But you must try. If you confide in good people, you may be surprised by the response. So when a neighbor calls round, or a work colleague, be honest.
Being ill and alone is frightening. But for many, painful as it can be, it isn’t as bad as they expected. Courage, optimism and positivity are vital. Above all, however, you must reach out to other people.