Perceptions

During times of hardship, pain, relapse and stress the chronically ill are placed in a very difficult position and judged much more harshly than any of their healthier counterparts.

For example, if a chronically ill person is in pain and they have been battling the unrelenting agony for hours, days, weeks or months on end, if they should slip and give way to anger, remorse or frustration they will be scolded and rebuked much more severely by those around them and can be met with “don’t yell at me! You are always angry!”, “you need to get on top of all this and change your attitude!”, “why should I look after you or help you when you do this?” Or “it’s all your own fault you are suffering!” Our actions can be seen as more evidence of weakness or unworthiness in the eyes of others.

Conversely, should a healthier man or woman give way and snap at a friend, colleague or loved one, due to workload, stress or other, it will most likely be interpreted as a cry for help and illicit offers of help and empathy simply because they are deemed more worthy or help and tolerance. Healthy people empathize with other healthy people who are busy, frustrated and stressed but rarely with someone who is chronically ill.

At this times we may even have our mental health and stability called into question simply for being forced to deal with things unimaginable to the rest of the world.

As well as the constant battle I face with pain, fear, anxiety and disability I also face a huge battle in effectively masking these things from those around me for fear of being judged.

I work hard so people still see the fun, happy, jolly, caring and intelligent person I am whilst trying to choke down the other part of me that is struggling, sad, betrayed, confused, hurting and suffering. It is why I have had to lock myself away from the outside world for most of my life now.

I don’t even share most of these things with my doctor for fear I will exhaust any compassion, empathy or tolerance she might have for me. It’s incredibly difficult to bear.

Many of the healthier people reading this may interpret this as being untrue, an exaggeration or baseless, however, ask a person who is chronically ill if this is accurate and, chances are, they will start nodding their heads emphatically or may even start crying themselves.

My own marriage faces this strain constantly and I force myself, as best I can, to try and step back and discuss what is happening in a calm and rational way to my husband. Even when I do this there is no guarantee that it will be received or be as helpful as I hope.

The alternative to being open about how you feel and experience this world is being closed, hidden, isolated and alone. This is often the shared feeling of so many fellow Autoimmunes and sufferers. The reality Of feeling alone in our most difficult moments and struggles is breathtakingly hard.

Imagine yourselves being in constant pain and struggle all day and all night and then consider how you might still be able to maintain a pleasing demeanour?

The humble way that many female Autoimmunes describe their partners with such empathic and heartfelt terms is taken for granted by the rest of world. For example, I constantly refer to my husband as “my poor D…, he has to put up …..”, or, instead of using his name I add the prefix ‘poor’ whenever I refer to him. As though it is awful that he has to contend with me or be around me.

I can honestly say that I have rarely encountered such ways of speaking outside the chronically ill community. Each Facebook post that I come across from my chronically ill friends always has such self effacing language and recognizes those in our life as more important, kind, generous and virtuous than ourselves by virtue of the fact that they are around and we owe them a constant debt for doing so.

Is this fair? Is this easy? No! But this is how many of us must live with chronic illness and the price we pay for something that is beyond our control or culpability.

At these times in our individual battles It would mean so much to us to be able to feel and tap into compassion and empathy and would be appreciated far more deeply than any healthier person could ever contemplate.

Gentle hugs,

Trish

3 thoughts on “Perceptions

  1. I know in Sheryl’s case, when she went and bought the pistol and loaded it with a clip of 1,000 bullets and put it on the remote control stand that tracks me around all the time. My sense is that I might be down to that first bullet ready to fire.

    Rat Rat Rat Rat a Tat, new husband. 🙂

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  2. I understand how are sense of self becomes eroded with the worsening of chronic symptoms. I reread my posts to see if I use those apologies and self depreciation language. I explained why I don’t reach out to people by saying in the middle of a flu do you think oh I’ll connect with some friends or extended family etc. I was told well you are always Ill. so you have to. Yes maybe that’s true. But it just doesn’t happen really. So slow increasing isolation? Or peace! Xx

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