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’.
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
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?
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 self-absorption. 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.
My elderly friend left me nothing
For more than ten years I was friends with an elderly neighbour, Joan, who was 35 years older than me, and did what I could to help. Her daughter visited once a week with food, stayed a short time and wouldn’t visit again until the following week.
Joan leant on me and I ended up in a caring role, later making it into a little job paid for by her attendance allowance. I washed her, styled her hair, cleaned, took her to appointments etc.
We included her in gatherings and gave her a big 90th birthday party. She called us for assistance most days. I got on with her daughter and never let it show I thought she should do more. In Joan’s later years, she talked incessantly about leaving me a cash gift, I told her I expected nothing.
Sadly, in December 2020 she caught Covid from me and died. I felt sad, guilty and wretched, and wasn’t allowed to see her in hospital. I met with the daughter twice, once to give information on what Joan wanted at her funeral and once after.
No mention was made of the gift to me or smaller legacies promised to two other neighbours. I still had the key and went to check the house.
The key was taken from me. I wrote to the daughter to explain I felt a bit used. No response. Then my husband was diagnosed with cancer at 59 so I was very fragile and she knew it.
I started to believe that Joan’s promised gift was maybe a manipulation (to keep me) as surely it would have been mentioned? It wasn’t about receiving money, but I did question Joan’s motives and it soured happy memories of my sweet friend.
Now I hear that two neighbours have received a small cash legacy from the daughter. It’s a huge slap in the face and I’m so angry with the daughter. All those years that she didn’t have to lift a finger!
How can I move past this?
Love thy neighbour as thyself’ is a truly noble commandment — and has surely always made practical as well as emotional sense.
In town or country, desert or mountain or sea, a life may depend on the generosity of others.
I’ve no doubt you were a transforming influence on Joan’s life and that she was deeply grateful.
It seems quite fair that you could obtain the attendance allowance she was entitled to — although, of course, that fact transformed the relationship into a ‘job’.
If Joan spoke of leaving you a present she must have meant it — and so I beg you not to sully her memory by thinking she was lying to keep you helping. That really does corrupt your service to her in rather a disappointing way.
Of course the gift would have been good to receive, because most of us would be glad of a windfall, however small. But to be absolutely honest, I do regret the tone you adopt at the end of your email.
There should be no place for the bitterness you feel. In your longer letter, you do admit that you grew angry with Joan’s daughter — and obviously let her know.
Could the fact that you were ‘off’ with her (were you even a bit rude?) be behind her decision to give the cash to the other two neighbours and not you?
You were critical of her all along and I bet she knew it. There is nothing to do now, but stop obsessing over this money. Joan is dead and you have your sick husband to take care of.
That should surely be the only thing now to fill your thoughts, allowing you to let Joan rest in peace.
There’s a kind reader who calls herself simply ‘The Angel Lady’ and twice this year she’s sent me a little collection of tiny handmade bead angels, just to cheer me up because she thought I sounded a bit down. And of course, they worked.
The glint of my kitchen lights on those little messengers of goodwill spilling from an envelope acted as an antidote to the bad news all around.
I love the fact that an M&S jumper with the word ‘BELIEVE’ on it became a bestseller. It’s incredibly hard to force yourself to be brave and believe things will improve — yet what alternative do we have?
I’m delighted when I hear back from those who have written with their problems and pain, then later share the good news that things did get better — even though they thought it impossible. It gives me quiet pleasure that I advised working through changes and believing in hope, even against the odds.
During the quiet time between Christmas and this new year I’ve been thinking of the words of the poet John Keats: ‘I am certain of nothing but of the holiness of the Heart’s affections and the truth of Imagination.’
That beautiful statement of belief is what drives Christmas, no matter how you choose to celebrate. Believe in what you will, as long as you keep belief in traditions of goodness in your heart. And keep them up and running.
When it feels harder than ever to imagine better times will come, try to focus on the ‘good news’ that’s all around, if you look.
Rejoice that people could see loved ones last week, decent people are kind to strangers, love is shared, children squeal with delight, brave souls rebuild. . . and no matter how many setbacks we encounter on our confusing road through life, nothing can cancel out those truths.
Even the light of a single candle, and the glimmer of one star in the night sky provide hope. And that, I promise you, is the message of the angels.
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)