THE BLOG

What Makes My Blood Boil?

09/07/2014 14:47 BST | Updated 07/09/2014 10:59 BST

Living with chronic disease, day in day out, 24/7, trust me, is no fun. Speaking from personal experience, suffering from two debilitating diseases (Gaucher and Parkinson's), just getting through each day is sometimes a major achievement, and yet most don't appreciate or understand what it's like to live this way. Why should they be able to comprehend the exasperation, frustration, chronic pain and endless symptoms of two diseases battling it out in my body, not to mention the strange side effects of strong medications? It's simply too much to expect anyone to grasp the enormity of a situation and what it's like to walk in my shoes.

Generally I keep very positive, and most of the time remain hopeful, have a cheery disposition and count my blessings. I know things could be far worse, and one doesn't have to look very far to find someone in a graver situation. I often put on a brave face, especially when in pain, for not only does it help me cope, but is far easier on my family and those around me. Seeing someone in chronic pain is not easy, and only in private when alone, do I allow my smile to slide from my face for a short time.

A person suffering a degenerative disease, no matter how well they cope, cannot in reality be upbeat and happy every single moment of each day. This would be impossible and an unrealistic expectation. There are bound to be times when pain, and the ongoing discomfort just get a little too much to bear, but with my British up-bringing of "stiff upper lip" and stoic nature, these down moments don't last long and I refuse to indulge myself wallowing in self pity. I pull myself together, regain composure and carry on. This is the only way I know how to cope.

It may be hard for doctors to understand, how I have the ability to bounce back. What really makes my blood boil, is when a well meaning doctor, who happens to catch me on a rough day, immediately makes a rash and incorrect diagnosis, recommending anti-depressants thinking this is the problem, when in reality I am far from depressed, and simply having a hard day. I believe anyone who is in a similar situation, is entitled and it's perfectly acceptable to have the occasional "off" day, without necessarily being "depressed".

I think it would be fair to say that most people, including doctors, may be far too quick to judge, perhaps having preconceived ideas of how a chronic patient should act. They may even assume that chronic disease and depression go hand in hand. Allow me to set you straight; chronic disease and depression are not married to each other, and often other symptoms such as fatigue or continual chronic pain can present themselves mirroring depression. On a bad day I generally hide myself away, hibernating like an old grizzly bear in winter, but emerge the following morning as if it were the first day of spring, determined as ever and ready to battle on.

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