Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘chronic illness’

Young, Single & Disabled. . . So What?!

I’m extremely open about my disabilities, which is why I agreed to take part in an interview last Sunday with BBC Three Counties Shrink Wrapped. I had a great experience down at BBC Three Counties and you can check out the interview here http://www.bbc.co.uk/programmes/p03gt2ql#play. Whilst I was more than happy to participate as they provided me with a fantastic outlet in which to advocate, I cannot help but feel that if I was not labelled by society then I would not be finding myself in a position where I need to explain myself and my relationship status.

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The first interview I participated in, several weeks ago, did not focus solely on my romantic encounters, they wished for my views on topics such as The Undateables, accessibility and more. This weekend’s interview however was entirely spotlighted on my romantic life. Whilst I was at the time more than happy to answer these questions and discuss the matter, I did not expect to find myself afterwards analyzing my position.

The more I contemplate over why I am still single, the more I came back to the same answer; who really knows why they are single? It is highly unlikely that a person is single for one specific reason whether disabled or not. I firmly believe that there is a reason for singledom other than ‘there is something fundamentally wrong with you’. Perhaps you’ve not met that right next significant other or a hundred other potential reasons. It is true that genetically I am a mixed bag and my brain is at best dysfunctional but despite all this I do not believe this to be the only clear cut reason that I remain single.

The labels of single and disabled along with my age thrown in for good measure seem to inflict panic in society. It would appear incomprehensible to some that I would remain single and not just settle for anyone accepting of my conditions. Whilst others view my marital status as a sad but unavoidable fact because let’s face it I’m not a genetic jackpot. Now I’m not denying that I would like to find that significant other, but at twenty-three I’m in no rush. So if I’m not panicking about it why must everyone else feel the need to do so? I ask you though would any of you be at all interested in this if I was able-bodied, would you simply tell me that I am young and not to worry?

We apply these labels and these associations to people without stopping to consider the implications they may have. There should not be an expectation upon them to simply accept them. Whilst I may have embraced mine to a degree, I took it apart, examined it and used it as a way to advocate for myself and others with the same chronic conditions. The people applying these labels are not taking every aspect of the person’s life into consideration. They simply see a problem and apply an appropriate term, a way of enabling them to cope is the only way I can explain this. What they fail to see is the normal factors that contribute to that labelled personality. If they looked closer at me for example, they would see the mirid of dates I have been on in the last few months, or my interactions on a night out. I am in that respect in the same league as all of my able-bodied friends.

So if you don’t mind I’ll take your labels and carry on ignoring them. For now, I’m going to enjoy singledom. After all something great is worth waiting for.

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The Ballet of I’m Fine

I’m very aware that today’s blog post may come across as me being grumpy, I assure you I’m not! I’m quiet cheery really. However I want to discuss a certain topic that is often glossed over when it comes to chronic illness. I like to refer to it as the Ballet of I’m Fine. We sufferers are experts in the dance, but it is one that we resent pirouetting to with a passion. Too often I see across the social media platforms people airing their feelings at having being cast in this ballet once again. But what else are they to do? Far too often we are acutely aware of people not wanting to know if we are anything but fine. It does not matter to them if our limbs are hideously distorted due to spasms, if our speech is slurred and our sight impaired. They are willing to blindly over look what they can see in front of them, as long as we dance the same old dance.

Well, why should we?! Let’s be honest here people, my ballet shoes are hardly ever worn, I air my illness through my blog. Yes I wish I didn’t have my conditions, but I do and I’m doing my best to raise awareness and carry on with life. So please excuse me if I retire from the Ballet of I’m Fine all together. I have been guilty of smoothing over my illness before to people I know would rather not hear about it. But enough is enough, the dancing shoes are going in the bin.

Chronic illness is not something to be ashamed off. We should not be living in the shadows with life passing by. So we are slightly different, we are unique. That simply makes us interesting. Instead of staring at me in the street, I would much rather you politely inquired as to what was wrong. I would love the chance to educate more people on the condition.

To you folk who care enough to truly listen to how we are holding up, you don’t know how amazing you are!

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Support System

Living with chronic illness is never easy. It impacts the majority, if not all, areas of your life. One of these areas is relationships. Whether this is friendships, family, or romantic relationships, chronic illnesses such as Dystonia can have a big impact. It is hard enough for the sufferer to understand what they are dealing with and cope with it, but for people who are not experiencing it themselves it really sums up their characters by how they react.

Personally I think it takes a lot of guts for a sufferer to open to their friends and family and admit that they have been diagnosed with Dystonia. It is not the easiest condition to explain. There is no rash or broken bone that they can see, no medicine that is going to cure you. You are sitting them down and admitting that you are not going to get better, that you may in fact get worse, but that you are hoping that a handful of medication and injections will help control the condition. People will either stand by you or they will turn their back on you.

I can remember when I first announced to those closest to me that I had finally been diagnosed. I was naïve enough to trust that my support system would stay intact. I never expected it to crumble around me. My relationship of two years broke down instantly, and many friends vanished into thin air. At the time I was lost, unable to comprehend how those I had thought would stand with me through thick and thin could just disappear the minute the going got tough. With time though I grow thankful that they did leave, it meant that I was left with a support system I could count on whenever I needed it.

When you live with Dystonia I think having a support system in place is one of the most vital things in enabling you to get by. Emotionally it means I know that I have friends I can count on to listen whenever I am having a bad day and am not sure how to cope anymore. Physically, I can be reassured that whenever I am functionally paralysed for example I know there are people I can rely on to help me. I know of some sufferers whose own family turned their back on them because they simply do not comprehend the condition well enough, I am blessed to have family and friends who are here for me 24/7.

Dystonia can be alienating, in life you do not often meet people with the condition. Surrounding yourself with people who love you despite having a brain that likes to be dysfunctional is important.

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