I mean, I would like to think that it's common knowledge that living with chronic illness is difficult. But is it just something we know? Or is it something that we generally understand, in actuality? And do we truly understand that just because something is difficult, or painful, does not mean it's a miserable existence? Chronic illness and chronic pain do not necessarily mean a person is in a constant state of unhappiness.
I thought I would break it down a little bit, based on my own experience. This is not for sympathy, this is for education and awareness. Do we really understand that the basic, necessary, and innate parts of life that healthy people experience without even a thought about it is often painful for people with chronic illness. A reminder that 'chronic' means it never goes away, and even if you're lucky enough to go into remission, the threat of it returning to fully active disease is always a cloud over someone's head.
So here it is - from my experience of things:
It hurts to eat.
Due to Crohn's Disease, everything I ingest is painful. Some foods/drinks are less painful than others, but literally everything I ingest causes some level of discomfort in my intestines. All the time.
It hurts to see.
Due to a Diplopia (double vision) syndrome and Macular Degeneration, my eyes are constantly straining to adjust my vision. The more I focus, the more pain I experience. The longer I focus, the more eye rest and eye drops I need. All the time.
It hurts to walk.
Due to Ankylosing Spondylitis, an arthritic condition that started in my SI joints, walking is painful. Now, I get radio-frequency ablation done in my SI joints and my spine to combat this pain, so my pain is a slight twinge instead of severe pain. All the time. When it was severe pain, I was using a cane and then an ambulatory wheelchair.
It hurts to breathe.
Due to Costochondritis; inflammation in my ribs, any lung expansion is painful. So deep breathing, yawning, sneezing, plus twisting/moving/shifting/lifting, all of this is painful. All the time.
It hurts to go to the washroom.
Crohn's Disease, yet again. Every bathroom break is painful/uncomfortable. Some days are worse than others, some are minor twinges, but it hurts every time. And also keep in mind that 'every time' for some people is multiple times a day. Double-digit times a day.
It hurts to be intimate.
This is from previous surgeries, previous adhesions, anatomy, Hereditary Angioedema, and Crohn's Disease. I was diagnosed with IBD a few years before I ever became sexually active, so I have never experienced intimacy that was not painful. A handful of times, if I've had enough alcohol, sometimes my brain won't register the pain during, but it floods in afterwards. It is painful. All the time.
It just hurts.
Then, of course, many of these chronic illnesses just hurt sporadically, regardless of what I am doing or have done. Crohn's Disease is one of them. Migraines too. The Ankylosing Spondylitis & Costochondritis. And so many diseases cause constant or near-constant pain. The levels may change and morph, but the discomfort is always there.
Luckily, our brains are fascinating pieces of biology, and all types of medicine can be incredible puzzle pieces to add to our big picture. With distraction, endorphins, adrenaline, medicine & other therapies, sometimes these pains can be ignored for a short time. This allows us to participate in activities, go out with friends, and enjoy some life in small bursts where we can ignore the pain, sort of. Twinge days are great for getting out and enjoying life.
