I have been thinking a lot about support these last few days. Its a funny word that, and hard to define. Support from others around me, from affected women, but also my personal support towards others. What does support mean? What is it?

Now this takes me back to Uni time where we were told, for exam purpouses to write a definition of the body of the question.

  1. Support can be sympathy, which means a feeling, concern, perception, understanding and reaction to the distress or need of another human being.
  2. It can be Social which is the perception and actuality that one is cared for, has assistance available from other people and that one is part of a supportive social network.
  3. It could also refer to peer support when people provide knowledge, experience, emotional, social or practical help to each other.
  4. Another form of support is moral support which refers to a way of giving support to a person or cause or to one side in a situation without making any contribution beyond the emotional or psychological value of the encouragement

(isn’t Wikipedia great??).

I guess everyone of us has to decide which form of support is needed and when and what that support is supposed to look like.

Another important question to answer is: can the person I want the support from actually give it to me in the way I need it right this very moment and can I in turn support that person the way they want and need? The reason I ask myself this a lot at the moment because I am personally stuck in a predicament where two people need support. But it seems one needs a very different form of support than the other.

The greatest thing since my appointment with my consultant is this floodgate of information that has opened for me and has led me to a group on a social network site where I can communicate with affected women. I guess this is the peer support that is so vital in a situation like this. As I have said, no-one actually knows what the hell you go through with ISS, because the general health is – mostly – not affected.

Take cancer for example: everyone knows about cancer. Most people probably have had to deal with cancer one way or another, be it personally or within their interpersonal circle. We all know most of the available options: chemo, radiation, surgery, in some cases only palliative medicine. We can relate to that much more because the suffering is so much more evident.

But with this, ISS, mostly we suffer in ‘silence’ (ok, please take away the damn stridor that you have whenever you take a step faster than snail pace). Most people with ISS have been suffering for several years, before having had successful treatment done. What is more frightening, before having even been diagnosed with the disease. Others have had major interventions and are still battleing with it, simply because it just hasn’t worked. I belong to the latter category.

At which point are you classed as selfish when you – rightfully – “demand” a certain level of support, or say “sorry, I cannot be there for you the way you want, because need you to be there for me this time“.

I think the pivotal point is when you can still reach out to people and their suffering (whatever that may be) even though you are facing battles of your own. Admittedly this may sound harsh, but I have started to decrease my level of sympathy towards people who only see themselves and their own drama and with that expecting everyone to turn towards them, forgetting the problems that they personally may have because ‘oh things are just so so bad‘. It is too draining when you are in desperate need yourself. In my experience, those who need support most, are the ones least likely to ask for it. Why is that?

Probably because they are stable enough in their medical situation that they can’t see the point in over-dramatising every last little detail about their situation but try and make light of it as best as they can. Or, because they simply don’t want to burden others with their problem, either because they see the other person is drastically worse off or because we allow ourselves to be sucked into the tide of negativity and stress that comes from the other person. One downfall of the latter is that once you try and express your own need for support you are called selfish and not empathetic enough. Tricky situation that. And there is no real easy way out of that.

It’s hard genaralising what support you need in a situation like this. I think it is just acceptance of your state in any given circumstance when actively dealing with this as hard as it is. (I can only imagine for an outsider that it is extremely difficult if you consider that it has taken a lot of women years to accept this medial state themselves, me included). Letting the person be angry, scream in rage (for those that can actually scream…). Letting them cry, wallow and miss something they have lost through this condition (and of course any other major medical issue). Just be there, there are often no words necessary. And if they are, please avoid cliché. Just ask or speak about it. It won’t do any harm, promise.

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