My life unexpectedly changed just a few short days after I married my high school sweetheart four years ago. I woke up with excruciating neck pain, migraine, fever, swollen lymph nodes and achy joints. Not a single day has gone by that I have not had some degree of pain. Some days are better than others, yet some are almost intolerable.
It’s been going on for eight and a half years now. That is eight and a half years of illness, a slew of annoying and even debilitating symptoms, doctor’s visits, treatments, blood draws, unanswered questions, incorrect diagnoses, excruciating pain and immense fatigue. First it was a severe case of mononucleosis, then a chronic salmonella infection, and then a small, blood-sucking insect bites me to transmit Lyme disease. Being sick for this long makes one actually get “good” at being sick. It sounds terrible, but if you’re chronically ill, I think you’ll understand what I mean. You get good at getting your blood drawn, taking your pills, masking the pain and refraining from chewing someone out when they say “but you look so healthy” or “maybe you should be a little more positive.” Even after such a long and tortuous struggle, I still get judged. I never would have envisioned a small insect changing my life forever… but it did.
Pain becomes a part of you when it is constant, like an evil twin. Some days she is tranquil, and others she rears her ugly head. Pain can be all about the person and perspective. What may feel like a pin prick to some may feel like a laceration to others, and what may feel like a broken bone to some may feel like a bruise to others. When you’re chronically ill and have chronic pain, symptoms start piling up and getting muddled together. Sometimes there is so much pain, it can simply leave you crushed and perplexed.
Why me? How is this possible? When will the pain end? Is this what the rest of my life will be? Filled with pain, questions and doubts, yet I trudge on. I continue living, enduring the pain, pushing myself and doing the best I can. I’m not saying chronic illness and pain do not change a person. But I ask myself, will you be better or bitter?
Please don’t mistake my realism with negativity. There is a huge difference between the two. I’ve divulged my true concerns and described my pain to someone in the hope of gaining understanding, but what I received was judgment. This person doesn’t know what it’s like to have chronic Lyme disease, arthritis, fibromyalgia, chronic fatigue and POTS. I have pushed past excruciating and debilitating pain just to carry a smile most days. To run to the grocery store. And some days it’s a feat just to make it across the house to get my medication or water. I have fallen apart and have picked myself back up. I have crawled my way out of the dark hole that can consumes someone with chronic pain. I have carried myself through days where I would rather die than live in this much pain. Hearing judgment about my chronic pain is a big pill to swallow, a bigger pill than the 36 pills I swallow every day for my comorbidities.
The truth is, some days I actually pity myself. Why would I pity myself? First of all, we are all human. It’s OK to feel, to cry, to fall apart. We all have our limits, and we all get knocked down every now and then. It doesn’t matter what brought us down, but if and how we got back up. I know what it’s like to live a life of discomfort and uncertainty. A life full of misfortunes and misunderstandings. But I’m not asking for pity. I’m asking for understanding and compassion. I’m asking not to be ridiculed when my strength wavers.
It’s not laziness, it’s Lyme disease. I’m not exaggerating, I’m enlightening. Most importantly, I’m not weak — I’m a warrior.
In this world, we are all struggling. Whether it be finances, family, work, health… we all struggle to some degree. Wouldn’t it be nice if we could bypass the judgment and be more compassionate to help others lessen that load?
I’ve learned so much more in my years with illness. I’ve learned to appreciate the smallest things. Even if you imagine a life in sickness and pain, you are not prepared for the trials and tribulations it brings — no one ever is. Please remember that you may see me stumble and fall, but I will always get back up and keep moving. I may move more slowly now, but I am not stopping.