People with chronic illnesses go through a lot on a daily basis. From the horrid array of physical symptoms to the dreaded psychological torture, we are warriors constantly battling an invisible war within our very own bodies. Some days the pain, both physical and psychological, is somewhat bearable and we are able to push through the day without having to explain how we really feel. On other days the pain is unbearable and we are not able to function properly. I have created a list of some of the worst symptoms people with postural orthostatic tachycardia syndrome and other chronic illnesses fight through on a daily (and sometimes hourly) basis.
I strongly believe that guilt is in my “top five worst symptoms of chronic illness” category, along with
grief and anxiety. We’re always asking the questions, “Is this my fault for being sick?” “I’m not trying hard enough, am I?” “Is it my fault that my friend got mad that I had to cancel?” I have recently been
overwhelming myself with the feeling of guilt, especially when it comes to canceling plans. When we cancel our plans with someone, the other party will often get upset whether they try to be understanding or not. But believe me, we feel it a lot worse than the people we cancelled on. Not only do we feel the pang of guilt believing it is our fault, the weight of the said person’s hurt also rests heavily on our shoulders.
Just like when you lose someone close to you, we may experience the stages of grief. And again. And again, and again. We grieve over the lives we’ve lost, our healthy lives that we lived before we became chronically ill. We grieve over the abilities we took for granted, like the ability to stand, shower, eat, and even think. These are only a few examples.
Denial: We deny our diagnosis. We deny that our former lives aren’t going to come back. We deny the explanations the doctors explain despite all the proof leading to said diagnosis.
Anger: We’re mad at the world. We’re mad at the doctor, how could they diagnosis me with such a thing? We’re even mad at ourselves, what did we do to deserve this?
Bargaining: We try to believe we have something lesser. Perhaps if we went to another doctor, they would diagnose us with something more treatable. Maybe if we pray more, it will go away.
Depression: We mourn over our lives we lost. We don’t see any hope for our futures. What’s the point in going on?
Acceptance: This one is hard to decipher because we all have different definitions of “acceptance.” To some, it’s throwing in the towel and giving into the illness. To others it’s a gateway to physically and mentally recovering.
3. Anxiety and “what ifs”
Let’s face it. If you had no idea what your body was going to do from one minute to the next, wouldn’t you be anxious? This is the nerve-racking reality of a person with chronic illness. We may get anxious over things like new treatment plans (what side effects will they have on my body?), going out in public (what if I have another relapse?), going to school (what if I have to drop out of school?), even eating (if I eat this, how is my body going to react?). To me, it’s the most heartbreaking symptom because you always have this constant feeling of impending doom. You worry about your next symptom, even if you are out having fun with friends and family. It’s always there, looming over your shoulder like an ominous black cloud, ready to strike you down with petrifying panic.
Fatigue is such an understatement. I prefer the term “swimming upstream with a flooding hazmat suit on while dragging an elephant.” And even that feels like an understatement! Fatigue isn’t just weakness or tiredness. It feels like your body is three times its normal weight and some days it’s even hard to lift your head off the pillow. And to make it worse, it doesn’t go away with extra rest or sleep. It’s consistent, always there. We’re just so good at hiding it. Because of the fatigue, we’re often incapable of preforming life’s simple daily activities such as showering, cleaning, going to the store, or even getting out of bed. Exercising is also extremely difficult to us, so we get labeled as “lazy” or “couch potatoes” or “not trying hard enough.”
5. Brain fog
All right, sometimes we can have a sense of humor when it comes to brain fog. But the majority of the time, brain fog isn’t so humorous. It’s annoying, embarrassing, and saddening. We could be having a conversation with you, then suddenly stop mid-sentence. We may begin to stutter as mumbling nonsense pours out of our mouths, or even just stare blankly into the distance as if you weren’t even there. We may become forgetful and not remember something you said. Please, don’t get mad at us!
Following these symptoms would be the symptoms like nausea, vomiting, migraines, headaches, tachycardia and/or bradycardia, hypotension and/or hypertension, tiredness, insomnia, numbness, chronic pain, palpitations, adrenaline rushes, weight fluctuations, blood sugar fluctuations, dehydration, menstrual irregularities, fevers, and even seizures, just to name a few. Yes, only a few. A fragment of the things we face on a daily basis.