Being sick means a lot of things in my world. It is a type of sick that is well beyond the common cold. Being sick is like having someone else in charge of my body and by extension my life. It means waking up full of plans and being unable to get out of bed. It means pills and doctors’ offices and hospitals. It means a whole host of things healthy people can’t really ever understand.
Being sick means both learning the limits of my broken body and paying attention to them. Blowing past those limits can mean a day or two in bed later. It is all about cost. If I do this, what will it cost me? Will the good outweigh the bad? Will it mean that I get a sense of accomplishment and pride with a side of sick in bed? Everything I do has to be weighed because it all costs my body. Every step is important and counted. Every minute is precious. It all has to count because the chronic pain and fatigue that haunts my body only allows me so much time or movement in a given day.
Being sick is also about being tired all the time. Some days it just a simple kind of tired that a nap could fix. That is a functional kind of tired that anyone can relate to. There is another kind of tired though that is unique to being sick. I will never understand how this one works. This kind of tired is a bone-deep fatigue that sneaks up on me. It is like a switch is flipped in my body and suddenly I have nothing left to give. I don’t slowly get tired or run out of energy. It is instant. I’ll pause in my day, sit down and rest for just a moment, let my guard down for just a bit and that is all it takes. Suddenly I can’t get off the couch. I can’t walk to the bathroom. I can’t reach the phone that is just beyond my fingertips. I always imagine it is sort of like being a shark. They stop swimming and they drown. I stop moving and exhaustion pulls me under.
Being sick is about disappointment. I am constantly disappointed by what I’ve had to give up because of my health. I’ve had to stop playing sports, I’ve had to stop running each day, and I’ve had to give up riding horses competitively. I have given up dreams and career goals. I will never stop being disappointed about those losses. This disappointment isn’t just all mine though. Since I never know how I will feel from hour to hour I am constantly cancelling activities with friends and family. Their disappointment hurts the most. I don’t want to be held hostage by my illness. I want to be a person who can be counted on. I can only really be counted on to cancel.
Being sick is about isolation. Sometimes, I have to isolate myself from others for my own health. My illness is primarily about having an over active immune system so I have to take medication that suppresses my immune system. This means I get sick easily and stay sick much longer than the average person. That self-imposed isolation is bearable because it is always temporary. The worst isolation though comes from a lack of understanding. Friends and loved ones don’t always understand that I cancel plans because I am sick. I don’t look sick, they reason, so I must be faking. They don’t understand that I refuse to take a quick weekend trip because it takes me an entire day to recover from any sort of travel. They don’t understand that going to work leaves me with nothing else by the end of the day. They don’t understand that a weekend outing has to include plenty of places for me to sit down to rest. They often think that I am ignoring them or don’t want to spend time with them. The isolation that is born of misunderstanding is the most painful form of isolation.
Being sick means an endless parade of medications. There are meds that help with the pain. There are meds that stop the damage caused by my immune system. There are meds that reign in my body’s attempts to destroy itself. There are steroids and immune suppressants and anti-inflammatories. There are vitamins and supplements. There are shots and infusions. There is a medication for everything. There is also a side effect for every medication. I’ve had meds eat a hole in my stomach and put me in the hospital. I’ve taken weekly medications that left me trapped in a cave of debilitating nausea an entire 24 hours after taking them. I’ve had meds wreck my liver, make me sensitive to sunlight, and even made my brain swim with confusion. The worst ones plunge me deep into depression or make me unable to get up and get out of bed. The best ones work so well that I flirt with addiction. Sadly, the one thing all those medications never do is work consistently. That is why they’re so ever changing.
Being sick means pain. Being in constant pain is like having static pumped into your brain 24/7. You can try to tune it out. You can pretend you don’t hear it. You can function but it wears on you until, even though it hasn’t changed, your perception of it has, and it is suddenly unbearably loud and you would do anything to make it stop. Chronic pain picks at you and wears on you until you can’t function. Chronic pain can make you feel like your limbs are wrapped in concrete. It makes simple things like a heavy coat or a thick blanket too heavy for your screaming body to bear. It can make a hot bath as addictive as the strongest street drugs. Chronic pain makes you tired, angry, and short with all the people around you. And then makes you feel guilty for being tired, angry and short. It is like having no control of your body and your emotions.
Being sick isn’t all bad though. I’ve found that it also means support groups. Through my support group I’ve been able to connect to people who understand what this life is like. I am finally not alone in all of the turmoil that being sick creates. My little support group understands things that no one else in my life can. We don’t all have the same diagnosis but that doesn’t matter. We understand side effects, medication fears, loss, personal relationship struggles and all the other ups and downs that come with being sick. We came together because we’re sick. We stay together because we’re friends.
Being sick also means learning to be still. If I were a well person I would be an unstoppable force of energy. I would go, go, go all day long. Being sick makes me stop and slow down and truly see the world around me. My illness grabs me by the shirt tail and tells me to wait, slow down, and relax. Because I’m sick I can appreciate the beauty in just sitting still and watching a breeze move the leaves of a tree. I have learned to, in the words of a favorite poet, “Be still and enter the quiet.” Because I’m sick I have found peace in watching the world move around me.
Being sick also means learning to count your blessings. The stress of being part of the life of a sick person is great. It has cost me both in friendship and in love. Yet I count my blessings each day because it has filtered the people in my world, culled the ones that weren’t good for me, and left me with the very best of the group. I now have friends that will leave presents on my back porch when they know I’ve had a rough day. I have friends who will come by just to give me a hug. I have friends who will take care of me without making me feel weak and broken.
I have been sick for over half my life. I have no concept of what it is like to get well or feel healthy. My illness is always hovering in the back of my life, ready to swoop in and knock me down at a moment’s notice. Being sick is not something I would wish on anyone. It is frequently hell on earth. It takes and takes from your life. It is filled with tears and anger and loneliness. But it is also filled with learning and changing and unexpected kindness. Being sick has shaped my life and brought me to a place I know I wouldn’t be if I were well. Being sick is the worst blessing I never wished to receive. I wouldn’t trade it for anything.
Did you know that May is National Arthritis Awareness Month? If not, you do now. Brace yourself for a month of posts about arthritis and all the fun (and unfun) things that go along with it. If you want to know more about arthritis visit The Arthritis Foundation at www.arthritis.org.