A patchwork quilt:

 

Labels can be really helpful. I’m on a diet at the moment and reading what’s in everything helps me make healthy choices. However you don’t have to look far to see the negative effects of labels… apartheid for example.

Some of the labels attached to me I am very proud of… Im a daughter, a wife, a sister, a granddaughter, a niece and a (kick ass) Aunty.  I’m a proud Arsenal and Carlisle United fan; I’m a proud supporter of the English football team and the Irish rugby team (don’t ask… dads fault!). I’m a social worker and a psychologist…. The list goes on.

But there are some labels I would quite happily give back… a cluster headache sufferer, a steroid dependant person, a stimulator patient, obese, anxious, depressed.

I feel like a patchwork quilt put together of labels… I feel like people can’t see Katie anymore just the labels that cover me. As the labels get more and more negative I’m scared people’s perception of me will change. I’m not saying this illness hasn’t changed me, it has. But not all for the bad, this illness destroys, lives, bodies, relationships, careers but it builds warrior’s, strong people who refuse to give and die when often it feels like the only option.  I’m lucky that my consultant still sees a person underneath and is desperate to let the rest of the world see her, sometimes he remembers and focuses on that more than I do... of everything he does, I hope he knows how important this is to me.

I want to be me again, with just the nice labels. The addition of a recent label or two has made me think about this a lot. I hate the fact that if I walked into an a&e (ER) the sheer number of diagnoses, issues and side effects of medication would mask the fact that a real life person was lurking underneath.

I try my hardest to highlight the good labels. To be the best wife I can be, to take my nieces and nephews on fun adventure, to listen to my sisters and my friends when they are in need. I’m hoping to watch the FA Cup final on Saturday without the assistance of oxygen and I want to use my education and qualifications for good.

I get frustrated when every conversation I have is about being ill in some way… but there are times that there is very little else in our lives. How can I expect people to see past the labels when they do in fact define me?  When people call and ask, how I am, how the treatment went, when’s my next appointment, I get upset wishing they would ask me how my night out was last week or when I fancy meeting for coffee. BUT if they call and don’t ask how I am, to me they no longer care and could be bothered to ask… Don’t worry my lovely wife has pointed out that this puts people in an actual impossible situation… its hard work being my friend… which is what makes our friends all the more special!

How can I get frustrated at being simply a collection of labels when that is what I am? There are days, weeks and months of the year, when I simply exist while my pain and other issues rule. I know we are all defined by our labels… I just wish that the majority of mine were positive to me. When people look at me I want them to see a wife, a caring person, an aunty, a sister… and dare I dream … one day a mum.