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What They Don’t Prepare You For When You’re Chronically Ill

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The truth is, nobody warns you about or can prepare you for a life of living with a chronic illness.

They don’t tell you about the emotional agony, often a good rival for the physical pain, of watching yourself lose power over your own life as plans and dreams have to go to the side, in favor of simply trying to get through each day. How you feel the years ticking past and you shake in fear that this could be it for the rest of your life, that no matter how hard you fight against it, you can’t guarantee you’ll win.

Nobody tells you that you can try all the advice: the diet changes, the sleep schedules, the physiotherapy, the medications, the lifestyle adaptations…and you still can be “stuck” in the grips of a chronic illness. You can rearrange your whole life and sometimes, just sometimes, it still won’t be enough.

They don’t warn you about the constant debate of feeling a new symptom, or feeling one get much worse and not knowing whether it’s bad enough to go to the doctor’s again (or even the hospital). Worrying that you may get there and it turns out to be fine, and you feel anxious that perhaps people will think you are a fraud — that they have deemed you attention-seeking or a “drama queen.”

They never warn you that there will be people questioning you, doubting you, forming their own judgments and opinions on something you have such little control over. Hearing “but you look fine” time and time again, and wondering if you even have the energy to explain to them what is really going on behind the surface. Often well-intentioned (but not always), people will try to offer their advice and tell you what you need to be doing to get better, and when you are still not better after fighting with 100 percent of what you have, they will tell you you just need to “try harder.”

Nobody ever tells you about the shame and the loneliness. How it starts with the shame of feeling like a “nuisance” and not being able to do most things, and then the friends who slowly back away, not sure how to relate to you anymore and not even trying to. The weeks that go past where nobody replies to you, and you feel so bad that you had to bail on plans again that you are scared to even make plans. The family gatherings where you dread the questioning, hearing how successful people are and feeling so embarrassed that your greatest achievement was being able to shower and make breakfast yourself that day. How you go home to your bed each night, and long for someone to understand and to be prepared to walk the unknown journey with you, for people to realize you still have something to give.

But most of all, you can never be prepared for the pain. The emotional pain of how the thrill of an improvement is nearly always followed by the agony of a setback and starting from scratch. The physical pain of feeling yourself hurt in places you didn’t even know you had. How you wonder if you’re “good enough,” if you will ever be good enough for a world that often measures you by what you can do. How you feel your body slowing down in front of you, not knowing if it will ever get better, if you will ever be able to chase your dreams and live the life you want.

When I think back to the medical room, when I was first diagnosed and told about how my illnesses could affect my life, these are the things they didn’t mention. But I think even if they did, nothing in the world could have prepared me.

Getty image via MarinaZg.

Originally published: October 18, 2019
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