Any chronic condition/disease can feel like it's towering over you and the effort to rise above it may seem insurmountable. It can be unsettling (like the feeling you get when you look at this picture too long). Keep reading so that you can scroll down the page and make the picture go away.
The U.S. National Center for Health Statistics describes a chronic disease as “lasting 3 months or more.” Based on this definition and a list of some chronic conditions/diseases, it turns out I have a few of my own (epilepsy and cancer) with the potential of adding a few more based on my current circumstances (not enough exercise and too much weight).
Having a chronic condition/disease is not anything that anyone wants.
The Word Chronic
Just the fact that a condition/disease is labelled as chronic means that it could last months, possibly years, or even a lifetime. It can feel daunting when you think that there is no quick end in sight. For example, I was diagnosed with epilepsy when I was a child and I know that it will be with me to the day I die. Most days are good for me, but when it’s bad, it’s really bad. I have to believe that each day will be a good one until proven otherwise. With my cancer, now that I am done with surgery, chemo and radiation, my cancer is in a holding pattern, where it could land at any time. Each day I have to believe that the cancer will stay at bay. I can’t think otherwise or it will drive me crazy(ier).
The problem with having something chronic is that it is harder to tell yourself to keep going because it will be over soon. It’s better to count the good days/weeks/months (for example, being seizure or cancer free) instead of focusing on the bad.
Since a chronic condition is not going to go away overnight, medication of some kind is likely to be required. The problem is that medication is not a one-size-fits-all experience. Using trial and error to figure out the best medication and the right dosage is one of the most frightening experiences.
For example, with epilepsy, playing with medication can have some major impacts rather quickly. Since you are dealing with the brain, it’s possible that there can be an increase in the number of seizures. There can be drastic changes in behaviour. There can be other side effects like chronic fatigue or problems with memory. Unfortunately, dealing with medication adjustments is not a one-time-only experience. The cycle of trial and error can be repeated many times. It’s never a fun experience.
Even when you have your medication sorted out, you have to remember to take it, which can actually be a two-step process. If you are going to be away from home, you have to remember to bring your medication with you. If you are having a great time, you have to remember to stop what you’re doing to take your medication on time. You also have to deal with the question, “Did I take my medication?” Sometimes the question comes from someone else and sometimes you ask yourself the question because you just can’t remember. You can use a pill container to try and keep track of things; however, since you may have been taking pills, like me, for a very long time, you may find yourself a little lax in remembering to top up your pill container again. It never ends, but it gives you the opportunity to improve your organizational skills.
And last, but not least, there is the expense of paying for medication. The one medication I take for my epilepsy has actually come down in price. I can’t believe it. I was told when I first started taking it over 14 years ago that it would come down in price, and it’s finally happened. See, miracles do happen.
It’s important to know that there are options available to help pay for medication that you can’t afford. This is what happened with me when I was going through chemo treatments and the cost of the medications I took outside the hospital had a price tag of $2,700 back in 2011. Between my insurance and programs available to help pay for medication, I never had to pay a cent.
Self-doubt and Fear
There is also the constant fear (even if it is only on a subconscious level) that my cancer could return or I could have another seizure and have to reset my count of being seizure free.
Some people have doubts about what they can do when they have a chronic condition/disease. When I say that I will present at a conference, part of me always wonders if I will get through it without having a seizure. I even wonder if my head will show up that day so that it’s clear enough for me to present. I tell myself that anyone (including those without a chronic condition/disease) could get sick the day of a presentation. I just trust that everything will be okay and, to date, everything has worked well.
And so Much More
Here are a few other items on my “I’d be okay to not experience” list:
So what do you do?
I like to think that having a chronic condition from such an early age has not only built character but made me a character too.
Over 30-years of writing experience, about 10 years as a cancer survivor, and a lifetime purveyor of wit and laughter.
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