Sarah’s blog



There are days, like the ones I have had lately, where the word “chronic” literally rings through my head every few minutes.  Constantly popping its head back up like a curse.  It is the word that engulfs my entire existence, and even during times when symptoms are a bit reduced, the truth of the word follows every action I manage to achieve.

Being in my mid-thirties, now, I have lived through seeing many people I know or are connected to, get ill from various illnesses;  some much rarer or confusing than others, and many of them very painful or complicated.  After finding treatment, going through the healing process, they continue on, somewhat changed and more grateful for their health, to live the rest of their lives.  I honestly can’t imagine what that might be like.  Of course I have had many temporary things wrong with me through the years, whether they were illness or injury, just like you probably have, but all those things, from the least to the most painful, are so very different than what it is like to have a chronic illness and chronic pain.

I think it is pretty human to get used to things as they are once they are the same for long enough.  I imagine this is why people say things like “time heals all wounds”, or “it gets easier every day”, when something terrible happens.  Obviously the idea is that the bad thing has happened, life is continuing on, and the longer you spend living back in that reality, the more the terrible thing starts to fade from your foremost thoughts and emotions.

I say that to try to impress on you the true heartbreak a life of chronic pain and illness carry along with it.  As symptoms flare and subside, which can happen for days, weeks, months, or even a year, we get used to the new reality.  If we are “lucky” enough to have something that has hurt for five years finally start to subside for a small amount of time, our human nature, the part that lets all wounds heal with time, cannot help but get used to that small new freedom.  It isn’t without complete skepticism, of course.  I am well aware that any one of my symptoms subsiding momentarily just means they will be back at some later point.  When that later point finally shows up, though, the heartbreak is hard to explain.  “Chronic” also means a life of chronic disappointment.  Something you could do last week isn’t necessarily going to be something you can do an hour from now.  When enough hours have passed, though, where you could do it, the moment it is snatched away again leaves a hole much bigger than the last time it happened.  The holes get so big over time that the abyss it creates swallows you, sometimes completely.

As you grow older with a chronic illness, you have to accept new losses completely outside of yourself.  When everyone I knew had just graduated high school and were planning to go to college, I was calling the admissions office of the school of my dreams to keep persuading them to push off my start date because at the time I had a home nurse and was on IV medicine.  I did this over and over again, so thoroughly determined to achieve this dream of mine.  Except that dream, and many more, would never really be achieved.  After so many delays I was finally told I would have to reapply for admission, understandably.  I never did.  I would never be in a position after that point where moving out of state, on my own, and doing every little thing from morning to night that every normal person does, would be achievable to me alone.

So you watch as everyone moves on to new aspects of their adulthood.  Exploring the things they love and discovering what might one day end up being their careers.  It happens around you much the same way you see those clips in movies where everyone in a city is moving sped up but the camera is focused on the one still person in the crowd.  You watch the entire world move and grow around you, and you do not grow with it.  You do not move on, you do not enter these different phases of life most adults you know do, because you simply cannot.  

Being someone who absolutely loved school, I was hell-bent on finishing it.  I took community college classes when I could, went to a tech school near home, and tried to finish a degree however I could manage.  I took a lot of classes at home, far-removed from the active classroom environment I sorely wished I could be a part of.  But symptoms don’t care about plans, and in order to keep my grade point average intact, I was forced to stop school every time symptoms flared up and made it impossible to continue.  I left and re-entered schooling repeatedly over the years for this reason, until I realized it was yet another pointless thing for me to fight for.  Following schooling to its logical conclusion would be that you hope to get a job or a life doing what you dedicated your time to learning.  This could not be my life, I could never do that, even if there was some miracle that allowed me to get through the education part.  With that, my dreams of achieving those milestones vanished.

As more and more of the normalities of life the average person experiences escape you, you become much further-removed from the world around you.  Despite the fact that I never wanted children, it never escaped me, while seeing more and more people I know start families, that even if I ever wanted to, I couldn’t.  Even if my body could carry a child to term, or at all, (most likely it can’t), I would never be well enough to give it the care and attention it deserved to have.  I might not have ever wanted a house full of children, but it never stopped me from understanding that if I did, it would be one more thing I would have to watch pass me by.  Another thing my body would decide for me, without my consent, without my cooperation.  Because “chronic” also means every second of your life is dictated by something you cannot change or control.  A reality you cannot control.

As the ones you love go on to settle down into their careers, their marriages, their daily lives, you are essentially still in the same position you were when it all started.  The only difference is you are most-likely more alone than ever, and have even more symptoms and pain than when it all started.  The truth is, people are usually very understanding, sympathetic, empathetic, when there is a direct and sudden threat to the health of their loved one.  When someone is going through an immediate crisis, whether it be a much-needed surgery, an accident, or something else, people seem to line up to offer support.  These things, in people’s minds, have time frames.  You might not know what it is at that moment, but you can be reasonably secure that ten years down the road the person isn’t going to be worse-off or still suffering from the same issue.  

But when you’re chronic, people don’t really know how to react to those endless spans of time.  There is no time limit, or implied time limit, on my illness, other than death.  The things I was complaining about hurting and disappointing me at nineteen still exist today and are still things that are a main focus of my existence at nearly all times. For the average person, cycling through their career, education, kids, and family, this stagnancy is unfortunately something they can’t wrap their heads around and they move on.  Over time, the circle of those called family and friends, gets so much smaller than we would ever have been able to prepare for.  I’ve often said in the end maybe it is better to know who you have in your life that will truly be there for you when things are bad, but in their absence, it is not always easy to not wish for pure optimism experienced in the face of ignorance.

I would like to think it has been more my personal experience than the experience of many with chronic pain and illness, but I know that isn’t the case.  I’ve heard too many stories of people who lose more and more people from their lives as their illness takes yet another year away from them.  That is another thing that being chronic means.  It means chronically being left behind, by the world, and by the people you love.  I imagine that, aside from the depressing nature of someone talking about being in pain you have no way of helping, it is much like one of those people from the earlier example, one of the sped up people in the background moving through the sped-up city, being asked to stop everything, to slow down and be in the still frame with the sick person.  The still frame is always the same, never changing, never growing, never really being very different.  It is more than most can, or want to handle, I understand this simply because I’ve had no choice.

I can remember when first getting sick, my stubbornness somehow still having any power in my life. What I mean is, there was a time I was too stubborn to ask for help a lot.  I would struggle to do things forever to not ask for more help.  The luxury of that stubbornness isn’t something I could hold onto for very long, though.  I need more help than I like to admit, and that is more of what chronic really means.  It means that your feeling of owning yourself, your independence, gets chiseled away bit by bit, as you are forced to ask for things you don’t want to ask for, to need things you don’t want to need, to stay behind from things you wish to experience.  At this point, it seems clear that independence becomes a bit of a joke, and the independence of a chronically ill person isn’t wrapped up in who they are as a person or what type of mentality or fortitude they have, but much like everything else, it is decided by the illness that cannot be removed, the pain that cannot be taken away, the disabilities that can’t be overcome.  Nearly all decisions must be run by the illness to be approved, and you essentially ask permission just to exist.  And you will exist, in whatever way it determines, for only as long as it determines.

I was once told someone understood the pain I must be in because they had a major illness and surgery many years earlier.  It bothered me.  Not because I was downplaying their experience, because all suffering is suffering no matter what form it takes.  But simply because they got over it, moved on and lived the life they wanted.  I have been told by people sometimes that they understand the pain I am in because of some injury they once had.  I wonder if any one of them ever wondered what would have happened to them if whatever they had never went away.  

Some days I lie in bed and look down at myself, counting all the body parts that no longer work.  I try to wonder or understand how much has to be taken away before the “me” is no longer there at all.  I sometimes imagine myself as being a lot like a houseplant, or a brain in a jar.  Sitting and watching, experiencing things that happen to it, without actually being able to make fully independent choices about itself.  On many days, I don’t see myself as much more than one of these examples.  

Chronic also means constantly having to relearn how to do things that once came much easier to you.  I’ve also been a diabetic since I was eleven, and every time my hands hurt, or become more useless, I have to find new ways of testing my blood sugar.  The few fingertips connected to my almost fully-contracted fingers, that I can reach are so calloused from being the only few I can lance, that getting the blood to come out at all is a constant struggle.  You end up having piles of random doo-dads all meant to make some part of life easier or more bearable.  As my hands got worse and worse, years ago, I switched from books to mostly audiobooks as it hurt to hold books most of the time.  The way I have to hold a pencil or a fork looks ridiculous but it became too painful to hold most books with my hands.  When it hurts too much to stand too long I sit on a bench in order to get a shower.  I have to make sure there is something for me to hold onto if I sit down somewhere, otherwise I couldn’t get up on my own most of the time.  All the little exceptions we have to make for our disabilities come at the price of piling even more constant reminders onto your shoulders.  Reminders of the waning independence you have in all things, in anything, at all, really.

About two years ago I achieved a goal I was ridiculously proud of.  I was able to walk all the way from one end of the boardwalk to the other, slowly, partially-limpy, but I did it.  I didn’t use a wheelchair or crutches.  It felt amazing.  But like every other time, that small bit of freedom was swallowed by the next wave of pain and disability.  It has been two years since then and the flare up of symptoms has still made it impossible for me to get back there.  I am probably much further away from it now than I was before I achieved it at all.  And just like that, those small moments of freedom and achievement become bitter memories of something you lost and might not ever get back again.  Every time you lose the ability to do something, the first time, or after many times, the chronic question pops its head up and asks “will it subside this time, will I ever be able to do that again?  Was that the last time I will ever experience that?”

Chronic pain is hard for people to understand, I think mostly, because of the constancy and never-ending nature of it.  It is hard to imagine something happening -to- you at all times, in sleep or awake, with every move and at every moment.  What it is like to blueprint every step you take so as not to hurt some tender part of your body, or what it is like to ration out small portions of what energy you have left to achieve something that people would probably find laughable to even call an “achievement”, at all.

I wish the people who shared my struggles had much less of these experiences than I know they do.  A burning building has a time limit, but it is very hard for someone to imagine a building burning forever.  Because of this, having a chronic illness means a life lived mostly inside of yourself, but sometimes having to live inside of a burning building becomes much more than could ever truly be explained or fully understood.  

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