Can you tell how I’m feeling by looking at me?

On 07/03/2020

"Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment."

Can you see the ice pick type pain stabbing my brain, nausea, the dizziness? The way it feels at times is like my hand is armed with a sledgehammer which is trying to break through my skull!

How about the swollen ankles and feet causing me to walk so carefully because I’m not sure at times I can trust my balance to get me from point A to B.

How about the way I cringe from a hug because of neuropathic tingling pains smattering across my back which means I hurt all over? The way I wince in pain when this debilitating pain strikes unexpectedly. Surely you can see that… surely you notice. Maybe you don’t do you!

Let me tell you now you can't tell by looking at me that I suffer from this invisible pain. Just over 8 years-ago a stage four cancer diagnosis came crashing into my life like a demolition wrecking ball, it shook my entire work pattern, dreams, and family. The unforeseen changes after my diagnosis left me and my family feeling quite vulnerable and lost at times. Tough times happen for everyone however, the road back to normalcy from a cancer diagnosis is never the same again... Much of what goes on with me on a day-by-day basis you cannot see. Can you tell how I’m feeling by looking at me? Because pain does not show itself in a tangible manner.....

I have often wondered what goes through the minds of people when they see a large strapping healthy-looking male sitting in a disabled seat area on a train or a bus. Unfortunately, many people make judgments about the capabilities of others based on the way they look.

Let me tell you sometimes I have just barely made it onto a train or bus, hoping that there’s a seat available, any seat will suffice. 

These invisible symptoms may not be obvious to you the average observer but to me a person with this invisible illness, I at times experience severe limitations on my daily activities and overall quality of life.

You may see someone who looks healthy park in a handicap spot and immediately assume that their handicap placard is being used illegally, when in reality that person may legitimately be in a lot of pain during their brief walk across the parking lot. 

I’ve known friends and family get frustrated at me that I am not available for social engagements anymore or that I am not feeling better yet. Looking fine on the outside can be extremely difficult to explain to others with what I am really dealing with on the inside. How do I make someone, anyone, understand and realise how much pain I am in when there are no visual signs of my pain other than my screwed up contorted face, which anybody can do. Even though I am able to keep going through my day that does not mean all is well, I am just an old soldier saying very little and trudging along through my life doing the impossible most times!

Trying to explain what you are going through to someone who does not truly understand life with an invisible illness can feel like a daunting task. And, at least in my experience, my efforts are often unsuccessful. This invisibility and lack of understanding can make people like me with advanced metastatic prostate cancer feel very isolated.

This is occasionally why I find myself feeling strangely grateful when I see my contorted or visibly swollen hands or when the pain in my toes and ankle forces me to limp whilst I walked. I felt like I finally had some “proof” that I could show to people who I knew were judging me by my appearance. Like maybe it would help some of them finally understand what I deal with and continue to deal with most days.

Please don’t get me wrong – I would never, ever wish for a physical deformity. I am extremely grateful to have access to medications that prevent my situation from going down a path such as this. And in no way do I mean any disrespect to people who live every day with physical disabilities.

All I am trying to do is get people, loved one's friends and family to recognise that sometimes the invisible painful aspect of life with Stage four cancer can be particularly difficult to cope with.

I never signed up for this, never in my wildest dreams could I have imagined that my life would be like this, day-in-day-out for over eight years...When you live with persistent pain it poses a threat to your overall mental well-being, involving obvious distress from the pain itself, alongside effects on daily functioning, fatigue, and ongoing uncertainty - all ultimately adding up to a chronic stressful situation, one to be avoided at all costs.

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