I yearn to stop feeling so lonely and trapped by illness

DEAR BEL,

IT IS especially hard for others, particularly other young people, to comprehend complex and often debilitating illness in someone else who is young and outwardly healthy.

I am in my late 20s, and I think some might describe me as even attractive. Due to an array of complex health conditions, I have been unable to work.

In my teenage years, I fell ill with anorexia and my mind was hijacked by a misunderstood illness for some time. I experienced then the pain caused by peers and teachers not understanding or relating to my illness. I know that some of them even thought I was ‘attention-seeking’.

For my friends in their 20s — enjoying busy careers, scaling the greasy pole, living independently, leading busy social lives — it is hard to fathom chronic illness in someone the same age.

At get-togethers I can be fun to be around. On a (very occasional) night out, when symptoms might have briefly subsided, I get a lot of attention. And that is what makes invisible illness so lonely. I think people find it hard to believe.

As a teenager who suffered from anorexia, I learnt about human nature. But with my new health conditions now, exacerbated by the stress of the pandemic and lockdowns (and delays in getting help), it doesn’t minimise the pain of the second blow. What advice would you give me?

ZOE

Surely something must have happened recently to make you feel you had to write. I suspect one of your friends teased you, or even made a harsher sardonic comment about your ‘invisible illness’.

This, I presume was ‘the second blow’ — and, after all the years of feeling misunderstood, it probably felt like the last straw.

I have no doubt (reading between the lines of your short email) that you have seen many doctors and almost certainly had some therapy, too. The only advice you are seeking from me is how to deal with other people day to day.

To be honest, I have reached this stage in my life convinced that it is normal for other people to shy away from pain. That’s why they tend to be bad at coping with a friend’s bereavement, for example.

It is also why the words, ‘I don’t know what to say’ serve as a distancing measure from the distress of others.

If you are physically ill, or in mental distress, or very, very sad, it’s understandable that you long for comfort from friends and workmates. But to me, it is also understandable that they quickly become confused by and/or bored with things they don’t want to know more about — and withdraw.

Believe me, I am not condoning unkindness or callousness or selfabsorption. I am simply confiding an aspect of human nature I’ve observed over many years. Some conditions of body, mind and spirit only become real to certain people when they have experienced them personally.

Many readers may by now be thinking of another condition which is very real — although it seems unreal. It’s called hypochondria.

A hypochondriac stays in perpetual stress about being ill or suffering from a disease. This is a mental state which can impinge on an individual’s quality of life, but can cause great irritation in family, friends and colleagues.

Many of us know people who look up the slightest little thing (such as a skin tag) on search engines, and become inordinately worried. It’s normal to want to find out, but not normal to become obsessed.

When Covid suddenly collided with our lives, many of us knew folk who responded with paralysed terror, while others did not — and may even have been blithely careless. In any case, the ‘stress’ you mention has had an effect on mental health in this

country which we are only just beginning to comprehend.

I mention hypochondria not to suggest that you have it, but to try to approach an explanation for why you think your friends behave as if they don’t believe you have the conditions which impair your life — apart from when you put on a brave face and go out.

The trouble is, the more you try to explain the reality of your problems, the more likely they are to think you are just complaining about nothing. If you think this may be true of particular people you know, then I’d advise not distressing yourself further by trying to make them understand.

Suggest they look up the term ‘invisible illness’, just to know more. They’ll discover it is an umbrella term including numerous chronic illnesses showing little to no visible signs, including fibromyalgia, diabetes, arthritis, depression, anxiety, endometriosis, irritable bowel syndrome (IBS) and many more. The invisibility of an illness presents challenges for the patient, especially when it comes to expressing the effects it can have on their daily life to others who do not have the same condition. Faced with a constant lack of compassion, it must be easy to succumb to loneliness and despair.

Do you have one good friend who could act as your ‘advocate’? It seems to me it might be a good idea to choose someone to confide in fully, so that she (or he) will be able to pipe up if somebody calls you ‘workshy’ or ‘a hypochondriac’ behind your back. That will happen — and you know it. Trying to get your whole circle of friends and acquaintances to understand would be a waste of the precious energy you need to cope with life.

Of course, in an ideal world we would all understand each other and not pass judgments.

But that is an impossibility — and anyway, sometimes judgment is essential. I can only ask you to use your own and not expect too much. Resilience can be an invisible remedy for many unseen conditions that trouble our hearts.

And now let us believe in a long year that is given to us, new, untouched, full of things that have never been, full of work that has never been done, full of tasks, claims, and demands; and let us see that we learn to take it . . . Rainer Maria Rilke (Austrian poet, 1875 – 1926)