Support network?

Today I feel a bit miffed. Not for me, but for my immediate family. Someone said something the other day that got me thinking…

There is a lack of support for my parents and siblings.

I do honestly feel that if I had any other condition that the situation would be different, ie. there would be support. (I can remember ringing people straight after my diagnosis to let them know how my appointment had gone, and the response was ‘Phew, thank god it isn’t M.S because that’s awful isn’t it?’ Well yes but, actually, the symptoms are much the same…)

Nobody outside of my immediate family has any idea what we have to contend with; the battles with medical professionals and the welfare state, never mind the actual, physical illness. Nobody has any idea how much of an impact this illness has had on the daily lives of my family. My family have been dealing and coping with this illness for over two years. To deal with it for two days is too long…

It is quite widely known that carers get a raw deal, but I am witnessing it first hand. My family has been left to navigate their way through the maze of caring for a chronically ill family member on their own. It is infuriating! There are no offers of help from friends of the family, afterall I only have M.E so I’m just easily tired and worn out. Nobody takes care of my family. Nobody gives them a break. I sometimes stay with my sister and my parents get a bit of respite but other than that there is nothing. My family wouldn’t want it any of way, but the offer of support would mean the world I’m sure.

While people always ask how I am, etc, which, don’t get me wrong is lovely, there is nothing more than that. Nothing more than a polite enquiry because it would be ‘rude’ not to ask. My mum is a wonderfully strong woman so perhaps people feel she is doing a splendid job already. She is! But she is still a human being! A human being whose daughter is incredibly and seriously ill, even if it is ‘only M.E’. How must that feel? How must it feel for my dad who is so desperate to include me and to understand? They have known me my whole life and now, as my life has changed beyond recognition, how do they keep a brave face? I am always here so when do they get to take off the mask? I can’t give them a proper break away from me and this retched illness…

Some people still maintain that I am ‘just tired’. I find it incredibly hurtful that they neglect to read the information I give them about the truth of what my illness is. I believe that many people outside of my family imagine that my illness is very much like depression. I genuinely feel that some people don’t take my illness seriously despite hearing about how poorly I am.

They ring to catch up and ask “How’s Anna today?” How do you answer that question? How hard must it be to have to answer it truthfully? There is never going to be a day where the response will be that I’ve made a miraculous recovery like they’re expecting. I haven’t got a stomach bug or a cold that will disappear is a few days. Of course it’s lovely that they ask about me. Of course it is! But I’ve never heard them ask about how my mum and family are in all of this; how they are coping; how they are surviving? It really is all ‘Me Me Me’.

My own friends ask how my family are with regards to my illness. I know that my closest friends are there to take the reins if I need a lift to an appointment or if I needed someone to cook me a meal, or even clean my teeth for me. While I am supported by both family and friends, I fear that the same cannot be said for my own immediate family.

I’m not sure what it is exactly that I want people to do for my family…My condition is so complex that I’m not sure what they could do…just to be there for them maybe? Don’t get me wrong, I understand that everyone has their own cross to bear in life…I know that people care about me and my family, but there is a difference between care and actual support.

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