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What Doctors and Media Leave Out About Living With a Chronic Illness

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There are a lot doctors, advocates, and media leave out when they tell you about living with a chronic illness. There’s a lot that’s impossible to communicate, that can’t be understood, and that can’t be known — until you live it. When that illness is largely invisible, multiply everything by a hundred.

They don’t tell you that you’ll try, time and time again, to justify your symptoms to others — even if you’re so incredibly lucky enough to have people that listen and believe you unconditionally. Pain, fatigue, depression, and lethargy cannot be seen, and you will know that. When you symptoms begin to stretch into the weeks, months, and years, seemingly unchanged, it gets harder and harder to believe that others don’t doubt you. It becomes harder and harder to not doubt yourself. In the beginning of this transformation, you start doubting yourself, your own senses, but in a different way than you did when you were bouncing around doctors’ offices, begging for someone to believe you. No, this is different. Then, you were desperate.

Now you wonder if your symptoms are psychosomatic, if you aren’t exaggerating everything in your mind. The people around you might not understand why the treatment hasn’t “worked.” After all, when they go to the doctor and get medicine, they feel better! Why don’t you? It’s inexplicable, this life of constant flare, of trying treatments for months only to realize that this one won’t cause remission, but let’s try another med or add something else…over and over again. Weeks become months. There might be some improvement, enough to trick you into believing that you’re on the way to remission, but not enough…and you stagnate. If you’re lucky, maybe your doctor really cares, really believes you, and does everything possible to get you as close as possible to your previous ability. Maybe that’s possible… But maybe it’s not.

They don’t tell you that living with hope is more debilitating than living without it. The small improvements you might achieve from different medications give you a glimmer of what might be possible. You remember what your life was like before the illness, of what you used to be capable of – those incredible feats of energy and ability that were possible before you got sick. Doctors even tell you there’s no reason you shouldn’t have that again, one day.

One day.

You used to run many errands in one day, going to the bank, the grocery store, the pet store, the post office, the gas station, a different grocery store, while think nothing of it. You used to enjoy work; you used to be able to work. I loved working. I would work until I physically couldn’t any more, and then I’d go home and work some more. Cleaning house was a high for me. Sundays would be spent scrubbing, cleaning, burnishing every surface until it all shone. These are things I can no longer do. I have to take breaks when I vacuum. I can’t leave the house to work any more. A trip to the grocery store leaves me exhausted. And still, I hope that I will, one day, return to some semblance of what I was like before illness. With that hope, I refuse to adapt to this new life. I refuse to put permanent limitations on my abilities. I tell myself and loved ones: this is not permanent. One day, I will be “better.” One day, we’ll be able to pick up where we left off. This is incredibly damaging. It keeps me hovering in the bounds of denial, and I cannot accept this new “normal.”

They don’t tell you that taking medications is hard. I was talking with some friends recently and they brought up how much they loathe getting shots, and how much they’ll do to avoid having a shot. They laughed and commiserated together. I sat in silence, trying to join in on the laughter and fun, but unable to move past my own reality. I give myself a shot every week. It hurts: the medication has air bubbles; the fluid is always cold. I numb the area for 30 minutes beforehand, but it’s always painful, and the injection site is always sore afterward. I was on a medication that was incredibly hard on my kidneys, and I had to drink upwards of a gallon of water every day to prevent kidney damage. Traveling was an issue with that much water consumption. I always had to be within immediate range of a bathroom – and there were instances I didn’t exactly make it in time. (I learned quickly to carry extra clothes with me while I was on that medication.) It’s not just embarrassing, it is incredibly degrading. No one tells you that you might have incontinence issues as a 30 year old woman because of what you have to do to avoid medication side effects. I’m now off that drug, but in it’s place is another, and this one – in a lot of ways – is scarier than the other.

They don’t tell you the emotional impact these drugs will have on you. I don’t have cancer, but a drug I take has chemo in it. It is used by about 90 percent of RA patients at some point in their treatment, but it’s still hard knowing that you’re on chemotherapy. I have a near obsession with hair and, even though I recently cut it short, I always take great pride in my hair care knowledge and regimen. My hair may look noticeably thinner. I won’t lose all of it, but that’s because the dosage I’m on doesn’t cause full hair loss. In some ways, though, this will be worse for me than just losing all of my hair. Being in-between only serves to sharpen the difference, leaving just enough room for hope that it is unbearable and stifling. If I lost it all, I could embrace my bare-headedness; I would wear bright, floral scarves, or skin-safe metallic paint (a la Cara Delevingne), or invest my hair-product budget into beautiful, fabulous wigs. In not losing all of my hair, I’m caught amid fear and denial, and I find it inconceivable to confront the issue head-on.

They don’t tell you how your understanding of words will change, how the word “pain” will come to mean very little, and how adept you will become at describing it. Sometimes this will unnerve those around you; most people don’t have to think about pain every second of the day, and it can be jarring to realize how intimately acquainted with it you have become. Before I was sick, I prided myself on how high my pain tolerance was. I rarely complained about it; I had blocked it out to the point that I was having constant, daily migraines, and I only rarely noticed them. Even though I am still in constant pain, I only recently realized how much I have begun blocking out. While at a doctor’s appointment, she prodded and gently squeezed my joints. While I had thought that, since I was typing with very little difficulty, I had no pain in my hands, the sudden pressure from an external source made me aware of the sharp aching that was there. I still have a high pain tolerance, it’s just that I’ve become accustomed to the ones that never go away.

They don’t tell you about the isolation—both necessary and consequential—that comes from living with an immunological chronic illness. Because of my fatigue, I rarely venture out; I don’t have an abundance of friends anyway, but I rarely get to see the ones that I do have. When I do see them, I’m terrified of getting sick. My immune system is compromised as a result of my medications. Visiting with people usually entails going out: to coffee, to a bar, to lunch. To places where people, of varying stages of illness and contagiousness, enjoy congregating. Getting sick would mean I would have to go off my meds in order to allow my body to fight off the bacteria or infection, which would mean that my RA would immediately flare and begin attacking my body in full force again. I cannot get sick; I’m utterly petrified of that happening.

Isolation also occurs with chronic illness because you’re different in a way that very, very few people without chronic illness will be able to understand. It can be scary for others to see—the pain, the fatigue, the changes in the person they knew and the life they thought they understood. It’s easy to self-impose that isolation, to not want to ask others for help, to not want to burden other people by telling them about your illness. It’s important to understand, though, what issues are yours and which ones aren’t, and to trust your friends who genuinely try to support you.

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Thinkstock Image By:JNemchinova

Originally published: May 30, 2017
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