The Common Question I Dread When My Health Temporarily Improves

“Aren’t you going back to work?”

Who knew six seemingly innocent little words could sting so badly? My physical state has improved for now, and this time I’ve had a few months that have been pretty good. Unfortunately, these plateaus aren’t permanent. Truly, I wish they were. I gain weight back, my stomach doesn’t feel like it’s eating itself from the inside, and I get out of the house of my own accord more often. I don’t fall asleep unintentionally, and going to the grocery store doesn’t require enough caffeine to power an elephant. But, as it inevitably does, the decline begins again.

I start to notice the fatigue as it builds over the first few weeks. At some point, a doctor or a nurse says, “You’re running a bit of a fever. Are you feeling OK? Have you been sick?” The fever doesn’t go away…for months. I develop coughs and congestion, and medical staff tell me repeatedly that it’s a cold, some kind of virus. Go home and take cough medicine, wait it out. It doesn’t get better for months, or sometimes years. Stiffening joints and pain in strange places, or just everywhere. Water retention. Nausea. Suddenly, I can’t keep up with the every day anymore. Unloading the dishwasher takes up the entire day’s energy quota.

I should really take my own advice, and not let the disbelief and judgments of others harm me. The only part of this that is visible to the naked eye is dramatic weight loss and gain. And even that only fuels the grapevine with whispers about purposely starving myself if my weight is low, or direct inquiries about pregnancy when the weight comes back.

The problem (as is unfortunately the case for many people living with an invisible, chronic illness) is that the judgments of others has caused me to downplay my illness, and accept inadequate, or at times no treatment, whatsoever. I sought the wrong kind of treatment for over 10 years after hearing, “You’re making this up, it’s all in your head,” one too many times and went through a cycle of practically every medication known to psychiatry, many with unpleasant side effects.

For the record, mental illness can absolutely be debilitating on its own, without any underlying physical cause and can be the cause of very real physical symptoms, too.

They say misery loves company, and that’s certainly true with respect to chronic illness. Isolation, guilt, and loss of independence can demolish a person’s self-worth both stealthily and rapidly. Any time I sought help for physical symptoms, I was labeled as whiny or a drug seeker, so I stopped asking for help and learned to put on a mask to force my way through the pain.

I spent so many years being told that I was just lazy and self-centered with a poor work ethic that I believed it. I criticized myself and pushed myself into physical crashes that left me weeping for hours before and after work. I lost physical coordination at times, which caused me several injuries working as an auto mechanic, including fairly serious burns, fracturing both elbows two weeks apart, and finally a crushed finger with permanent nerve damage. I spent hours in the waiting room of an urgent care with blood pooling into the palm of my hand cupped under my smashed digit, unnoticed because I didn’t impatiently approach the counter as people who arrived after me were seen first or shed a tear despite the pain I was in. Even after realizing I could no longer physically work in the field I loved the most, I spent the next two years in two more highly physical jobs.

Everything changed last year when I spent two weeks trying to banish suddenly feeling the worst I’d ever felt in my life with sheer willpower. I told myself I was being overly dramatic and continued going to work instead of seeking medical attention. When I finally convinced myself to see a doctor, I learned that I’d actually had a cardiac event that could have claimed my life because I didn’t seek immediate treatment. I couldn’t wrap my head around the prospect at first…I was 29 years old at the time. Was I really so immersed in my practiced concealment of pain I could overlook those symptoms? It didn’t really sink in until the doctor looked me right in the eye and said, “You have to stop working and take care of yourself, or you’re going to end up dying.” By far, that was the most terrifying moment of my life, but I also felt some sense of relief. It meant I wasn’t lazy, whiny, or crazy. My severe fatigue wasn’t the result of selfishness. Genuinely, truly, I’m sick and it isn’t all in my head.

And what happened when I contacted my boss to tell him I could no longer work? He told me he’d never heard of anyone being sick enough to have to leave a job. I sat in stunned silence for a while, trying to decide if the rising feeling in my throat was the angry words I wanted to unleash or if I was actually going to throw up. I decided to hold my tongue and calmly retract my offer to work remotely at my computer for a couple weeks to lessen the impact the lack of my physical presence would cause, considering I was the facility manager. I chose myself, my health, and my quality of life at that moment.

Now, I advocate for those living with chronic illness any way I can. Whether you’re living under the thumb of physical or mental illness, don’t struggle in silence. I know limitations can be devastating…I couldn’t afford health insurance premiums but didn’t (and still don’t) qualify for assistance. The only two family members I have in the same state are in another town, and the rest are 14 hours away and unable to help. The one and only friend I have nearby who stood by me through everything, because she also lives with a chronic condition, lives in a city more than an hour away. I had no safety net, no savings to fall back on, and very little support.

I’m blessed to have a husband who has seen me at my worst and will advocate for me when I encounter backlash. You’re not alone and you’re not invisible, no matter how small the words and actions of others might make you feel. Regardless of whether your body or your mind are in a state of rebellion, it isn’t all in your head. You deserve a doctor and support system that will hear your concerns and provide the treatment you need. An invisible illness is just as real as a visible one, and no condition, seen or unseen, means you’re inadequate as a person. Naysayers will always exist in every walk of life, but it doesn’t have to define you or diminish your quality of life. And you’re stronger than you know!

Getty Image by Marjan_Apostolovic