… also without having a problem!

When your brother or sister has a mental illness or disability you assume there is no support for you. May be, like me, you do not feel you need help. Rethink Mental Illness held their first Sibling Conference in London. My curiosity had made me enroll, by attending I understood what I had missed growing up with my blind brother, with autism.

My two worlds

The sooner a sibling gets help or support the better it is, two of the main speakers, Monica McCaffrey of SIBS UK and Jo Smith, clinical psychologist, stressed. Yet the thought to look for support for ‘being a sibling’ was not a need before my thirties.

Before that I did not really know that growing up with my brother had affected my reasoning and dealing with emotions so much. I have grown up with struggles, such as never being able to play with my brother, feeling the bickering between my mother and father, dealing with strangers’  stares and odd remarks, and trying to combine my two worlds: the one most people share and my brother’s home with different accepted behaviours. How should I have understood that I needed support? And now all of the speakers at the Rethink Siblings Conference were saying I had a right to support growing up.

My brother, my support

Even when my parents died  when I was young – my mother at 16 and father at 19 years –  I did not feel the need for support. Until the conference I thought you needed to see your brother as a problem (for example if he hit you), to ask for help. And my brother was never that – a problem, not even when all other ground had shifted away beneath my feet.

My blind, autistic brother was the the only brick of my old house standing, and needed him to remain who he was: himself. Yes, I could not share emotions with him, but I did lean on him too: he was my same, older brother. And he lived since the age of six in a home, so it was not like I had to take him in.

Keep on going, without thinking too much

It was ‘just’ a question of: how to combine partying and duties, without feeling the hangover too much? Of course, combining to deal with the shock, and paperwork, taxreturns, study, visits to my brother and having a life at the same time was a challenge, but it felt manageable at the time. The year before I had lived in London on my own, and I had sniffed freedom. So at first only wanted my life to continue normally: with a focus on a ‘normal life’. Looking back that took much more of my energy than I had ever imagined, but back then I could only focus on the here and now. In some instances – especially when the challenges are too big to understand – not thinking is better to keep on going.

Writing a Dutch sibling book

Deeper questions started after five years, and only five years ago, reaching thirty, I decided to look for information about siblings on the Dutch web. The only other thing I came across were sibling talk sessions for kids until the age of 15 years. I did not find one Dutch sibling book for adults. So when, after three years as a journalist at the Dutch radio channel BNR News radio, I followed my husband to France, I decided it was now or never. Two years ago I sat down and started writing: a book filled with interviews of siblings of all ages, to identify and compare with, and to may be see what could still lie ahead.

A sibling’s DAY?

When I saw the tweet about the Siblings Connect Day of Rethink Mental Illness I was outright curious: ‘What could they be doing all day?’ I wondered. Somewhere, far away in the back of my mind, I pondered: ‘Could this also be of any use to me, personally?’

The siblings day was specifically aimed at siblings of people with a depression, schizophrenia and bipolar syndrome… Very different a blind brother, with autism. Again, I know sometimes your heart tells you not to think, and that is how I got on a plane from Lyon to London on the 12th of May.

At the right place

As I was walked out of Russell tube station – with only a hundred meters before I reached the venue at the Russell Hotel -, I felt an immense resistance to continue and asked myself: ‘What am I here, when I don’t have problem?’

By stepping up the pace I let that thought pass. Just as I started to wonder if I would be the only one to attend, I stopped before a majestic hall.  Coming eye to eye with all those ‘me’s’ got the better of me. Instantly my heart felt heavy and it took al my energy to act normal and not to burst into tears. ‘A place at last’ is the only thing I can remember thinking. I faced a big room filled with people making enquiries, talking relaxed, waking up over a cup of coffee…

Thoughts, feelings, questions

Could it be true that all the questions I had asked myself over time, thoughts I had personally reasoned and dealt with, feelings I had expressed, but had never been picked up by anyone, could finally found their destination? I was thrilled, yet a second later I switched to anger and felt sad: I was at right place, but in the wrong country. Even worse: all these years I had not been looking for information and fellow siblings, and now I realised I should have been offered it at a much-much earlier age, not just at thirty-five.

No place for siblings

‘Most siblings do not really think a place for them exists’, the founder of Sibs,the UK charity for siblings of disabled people, Monica McCaffrey explained in her talk. ‘Am I at the right place?!’ is the first question most siblings ask when they ring the only Sibling charity in Britain. This is because of the ‘Super Child Syndrom’. Siblings do not feel that they should talk about feelings, nor are they encouraged to do so when they grow up. So the biggest challenge for a sibling is to say is “I have the right to talk about my experiences”.

Clinical psychologist and Early Intervention Lead at the NHS Jo Smith also spoke and quoted a passage from a book that best explains, the situation siblings are in:

Siblings

  • ‘have too little information, yet they know too much;
  • are often involved but without a defined role or knowing what is expected of them;
  • experience difficulties but asking for help may risk making themselves more vulnerable;
  • find themselves in the dilemma of choosing between compassion or abandonment’.                                  (Davtian, 2003, ‘No Man’s Land’)

Indeed, as I asked myself above: How can a sibling understand it needs support, when they are unaware that they are in the dark and need tools? Clinical psychologist Ms Smith continued to say that when she tells parents in an early intervention that their other children are at risk too, two out of ten will get aggressive. They will shout and say: ‘So now you are saying we are having two problems in stead of one? Thanks!’.

Who wants to be defined by an illness or disability?

One remark of another speaker, Sathnam Sanghera journalist and author of the book ’Boy with the topknot’, unexpectedly rang a bell with me. ‘I do not want to be defined by the illnesses,’ he said. In his case he had a father and sister with schizophrenia. It hit home. At a young age I had decided that my brothers ‘problems’ should not define who I was! I had fought a lifetime to be me, always trying to shake of the mostly sad stigma of ‘having a handicapped brother’. Not because I felt sorry for me, but because I could never tell it in a positive way. People always start and look at you with those puppy eyes. Well-meant but not helpful!

His remark reminded me of  what I used to say, to create more happy vibe with people I met: ‘my brother is blind and handicapped, but he is always happy!’. When they did not pick up on that, I gave up and decided to not talk too much about my brother.

I thought I recognized it too in Mr Sanghera’s story,  when he casually said: ‘The book is actually quite funny, you know!’. Because directly after a long piece on how his sisters schizophrenia showed itself to her and him. (Mr Sanghera, for you to judge!)

Stigma of  ‘no need for siblings support’

Siblings do not tend to demand support for all the reasons in the world… So they get overlooked, and because they get overlooked, they do not get support. The stigma is maintained and people go on thinking siblings do not need support.  Sibs’ chief executive Monica McCaffrey put it much stronger: it is the denial of he right to talk about our experiences. She is already talking about ‘raising the profile of siblings in the UK’, though in Holland we not yet have a profile.

A family functioning

Then McCaffrey stressed that support for a sibling is also important for the family functioning as a whole.  She has two disabled brothers herself and confirmed that the direct consequences was that this put enormous pressure on her family. She explained that parents and siblings react differently to a mental illness and that they will develop different views on how to manage the situation.

Tools

So when Monica McCaffrey asked us: ‘Where are you in all of this?’ and laid out the issues siblings normally face, I ticked the boxes one by one:

  • worry (what will be expect when I grow up?),
  • guilt (how could I fully enjoy my life, when it was linked to my brothers’?)
  • parental tensions.
In the end: my brother was not the problem, but all reactions to him, from my mother, my father, family, friends, strangers. Yet because I was born into the situation, I did not know any different. Now I understand that my mother and father had a communications problem, and that I got stuck in the middle.
That is how I realized that if someone had given me some tools earlier on, it would have made my life a lot easier. For one, I would not be writing this book, because siblings would be a focus in the Care world, or even better, there would be a ‘family centered’  approach in Holland, as opposed to the ‘parent- disabled child’ one, at the moment – as if siblings do not help, interact and feel everything too!

Tools on how to live a little

How wonderful it would have been, if growing up I would have talked with other sibs in the same situation. We could have talked together about how it is that we always and everywhere feel compelled to fight other kids battles, because you always think: ‘that could have been my brother!’- . Not a bad thing at all, but it would have been nice to compare notes and understand WHY we (especially girls) seem to do that. Because why was not everybody doing this? I was alone with my thoughts and questions that I see now are a result of being over-responsible, and over-independent, all of the time from as long as I can remember. And it continued later in life: in the working place I cannot deal with ‘company politics’ (ha, yes, I worked in the parliament: a real laugh for ‘my profile’!), nor can I say: I want this pay raise (I prefer to not go to battle).

A carer could have given me insight (and hence the words to tell others) in what kind of situation I was in, on the “Why do I feel different and how different do I want to be?”. Adults could see the whole picture of parents under stress, but I always thought it was for having a ‘sad’ brother… and he was the one thing I did not feel bad about. I understood parents can get it so wrong. May be that is why I chose young, to go my own way, and think my own thoughts.

Surely, sticking up for others made me feel immensely proud too, but I wished an aunt, nephew, someone close, would have emphasized: “Don’t forget – it’s important to live a little too!”

Use your voice

As I blogged before, not many siblings demand support in Holland. That is surely one of the main reasons why my generation (35+) has been overlooked. Hopefully my forthcoming book can rock some boats, because information and research is now available. Siblings may not be aware, but since 2004 we are even being asked about our experiences: until then they asked our parents about ‘how we felt about it’! This has changed ‘our’ stories to real ones.

We’ have been given a voice, so let’s use it!

Dutch Siblings 2020?

If we would come together now – like the siblings at Rethink did seven years ago -, we should have our first Sibling Conference in 2020. Who’s in with me?! Email me on JETALERT@LIVE.COM, share this story or write a comment below.

=> More information about what we did at the SIBLINGS CONNECT CONFERENCE –  click here

=> Monica McCaffrey also wrote a book, that was translated in Dutch, ‘Speciale Broers en Zussen’ (aanrader door brusjes!!)

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