Dear Bel
For young adults, it is particularly difficult to understand complex, often debilitating illnesses in others.
In my late 20s I consider myself attractive. Because of a variety complex medical conditions, I was unable to work.
My teenage years were dominated by anorexia. Peers and teachers did not understand or relate to me, which caused pain. I know that some of them even thought I was ‘attention-seeking’.
In my late 20s I consider myself to be attractive. A variety of complicated health issues have prevented me from working.
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.
When I’m at social events, it can be a lot of fun. Even though my symptoms may have temporarily subsided, it is still fun to be around people on a night out. This is why invisible illnesses can be so lonely. People find it difficult to believe.
Anorexia was a condition I suffered as a teenager. This taught me countless things about humanity. 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. I would appreciate your advice.
Zoe
You must have felt the need to write recently. 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.
Your email is short enough to show me that I am certain you have had treatment and seen many doctors. My advice is limited to how you deal with others every day.
Since I reached this point in my life, I believe that other people should not shy away from suffering. 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.
Trust me. I don’t condone unkindness, callousness, or self-absorption. I am simply confiding an aspect of human nature I’ve observed over many years.
Certain conditions in body, mind or spirit are only real for those who have personally experienced them.
Many readers may by now be thinking of another condition which is very real — although it seems unreal. It’s called hypochondria.
The hypochondriac is constantly worried about becoming ill.
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.
We all know someone who searches for the smallest thing, such as a skin tag on Google search engines and becomes inordinately anxious. 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.
Problem is that people will think you’re complaining about nothing if you don’t explain your real problems. 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. It is difficult for patients to express the impact of an invisible illness to their loved ones. It is easy to become depressed and lonely when you are faced with an inexplicable lack of compassion.
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. You don’t need to try to convince your entire circle of friends or acquaintances. It will only waste the energy that you have to live.
We would be able to understand and share our thoughts in an ideal world.
But that is an impossibility — and anyway, sometimes judgment is essential. It is my only request that you use your judgment and not take too much. The invisible cure for many conditions and problems in our lives can be found in resilience.
An elderly friend of mine left nothing for me
Dear Bel
Joan was a 35-year-old neighbor who I lived with for more than 10 years. I did my best to assist her. Her daughter visited once a week with food, stayed a short time and wouldn’t visit again until the following week.
Joan trusted me, and eventually I was able to take on a caregiving role. Later she paid her an attendance allowance. I washed, styled, clean, and took her to appointments.
We invited her to all the events and celebrated her big 90th Birthday. We were there to help her every day. She was a great mother and I enjoyed getting to know her. In Joan’s later years, she talked incessantly about leaving me a cash gift, I told her I expected nothing.
She died in December 2020 from Covid. I felt sad, guilty and wretched, and wasn’t allowed to see her in hospital. The daughter and I spoke twice: once for information about Joan’s funeral wishes, the other to discuss her grieving process.
There was no mention of my gift or the small legacies that were promised to two neighbours. I found the key in my possession and checked the house.
I lost the key. I wrote my daughter explaining that I felt somewhat used. There was no reply. My husband, then 59 years old, was diagnosed with lung cancer.
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.
The daughter has left a modest cash legacy to two of our neighbours. 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!
What can I do to get past it?
Lena
Love thy neighbour as thyself’ is a truly noble commandment — and has surely always made practical as well as emotional sense.
Life can be dependent on generosity, in town, country or mountains, as well as the kindness 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. This really can corrupt the quality of your service to Joan in a very disappointing manner.
The gift was a nice gesture, and most people would appreciate a small amount of money. However, to be completely honest, I regret the tone that you used at the bottom of your email.
The bitterness that you feel should never be allowed to fester. 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?) Could it be that she gave the money to her two neighbors and not to you?
It was clear that you had been critical of her throughout, and she probably knew. You don’t have anything to do right now. Stop obsessing about this amount of money. Joan has passed away and your husband is ill.
This should be all you think about now, so that Joan can rest easy.
Und schließlich
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. These worked.
My kitchen light glowed on the little messages of goodness that came in an envelope. It was a great antidote for all of the negative news.
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. This makes me happy to tell people that even though it seems impossible, they can make positive changes and believe in the possibility of things turning out well.
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.’
This beautiful declaration of belief drives Christmas no matter what celebration you celebrate. You can have faith in any tradition of goodness, so long as it is in you. These traditions should be kept alive.
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.
You can rejoice that you could be reunited with loved ones this week. People are generous to strangers. . . These truths are irrefutable, no matter how difficult life can be.
Even the light of one candle or the shimmer of one star in a night sky can give us hope. This, I swear, is the message from the angels.
Now let’s believe in the long year we have been given, fresh, untouched and full of new things, work that was never done, with many tasks, claims and demands. Let us learn from it. . .
Rainer Maria Rilke (Austrian poet, 1875 – 1926)