To My Former (Healthy) Self Before My Chronic Illness Affected Me
I’ve got good news and bad news for you. I’ll deliver the bad news first: You are about to become sick with a mysterious and debilitating illness. It will come on slowly at first with minor symptoms that you will dismiss. Then all of a sudden, life will feel like a twisted joke when you no longer have control over your own body.
Your life will change in every way when the illness starts taking things away from you. You will battle aggressively to try to control the disease. Most of your days will be spent managing your conditions and trying to hunt down the correct diagnoses. You will see 30 doctors and visit the Mayo Clinic before you turn 30 years old.
This battle will take many things away from you, but you will gain a tremendous amount in return — but I’ll get to that later.
More of the Bad News
You are about to lose a great deal. Some of your most basic freedoms will be taken away. You will experience periods of time where you won’t be able to use your hands or stand up. That means you will need help showering, dressing yourself, preparing food and eating. You will quit multiple jobs when they make your symptoms worse or do not allow you the time and flexibility to take care of yourself. You will lose your house because you will have to choose between spending an ungodly amount of money on healthcare and paying your mortgage. Worst of all, your disease will take your baby girl before you can even meet her.
You are going to give up so much. For a while, you will abandon dreams, simple pleasures and your creative side will starve. Forget about eating whatever you want. Your favorite foods will cause pain and suffering. You wont be able to party and dance the night away with your friends. Your dreams of holding a successful career will fall apart.
You will throw in the towel on your classical voice studies because you simply cannot be on your feet long enough to rehearse or perform. Cooking is not an option when you can’t stand or hold a knife. The fashionista within will bow out because you won’t be able to wear whatever you want. You wont be able to travel or go out on the town due to budget constraints and the logistics of finding food/getting around.
You will be forced to think about things that never crossed your mind before. You will worry about your ability to physically and financially care for yourself and your family. Your whole day will be planned around finding a place to sit down and preserving the little energy you have. You will have awkward conversations with restaurant waiters about the menu and have tense discussions with human resources staffers about accommodations.
You will wonder, “How will I shop, prepare meals, clean my house or run errands?”
When you arrive at a social event you will worry, “Are there any seats for me to sit down and rest my feet?” and “Is there anything that I can eat at this party/restaurant that won’t make me sick?”
You will have to swallow your pride and rely on other people to do things you would rather do yourself. With much difficulty, you will leave your family and friends to move across country to a better climate.
Illness will affect your relationships. Friendships will suffer when you can’t do the things you used to do. Some people in your life wont be able to handle the changes in you or won’t try to understand. People will make all sorts of offensive and judgmental comments about your illness.
You will doubt yourself and ignore your early symptoms when your doctors and family members say your illness is all in your head.
The Good News
I know this all sounds horrible, but you will figure out how to find peace, joy and still manage to live boldly despite your limitations.
You will gain so much perspective and life experience.
You will develop enormous compassion for those suffering — especially those with invisible illnesses.
You will meet wonderful and amazing people — those who are suffering along side you and those who want to help.
You will learn that relationships are precious and become better at developing and maintaining them.
You will learn priceless lessons on how to listen to your body and take care of yourself.
You will develop a “life is short” attitude and take advantage of your “good days.”
You won’t sweat the small stuff. It will feel liberating when you don’t have to worry about the “normal” stuff women worry about.
Even though you thought you had to give up your dream job, you will somehow end up with an amazing career doing creative things that you love like singing and writing.
You will turn this around and make yourself better. After much trial and error, you will learn how to talk to doctors in order to get them to actually listen. You will learn to become your own advocate, and you will fight tooth and nail to be heard.
Along the way, you will marry an amazing man who will support you and fight with you.
You will appreciate life simply because “I’m still here, damn it!”
My Advice to You
Trust your intuition. It’s easy to just assume you might be losing your mind when people don’t believe you and doctors won’t help. You know your body better than everybody else. When the pain starts, please don’t ignore it.
Please know this illness isn’t your fault. Don’t listen to the people who say you’re not doing enough of “this” or you’re doing too much of “that.” You didn’t bring this upon yourself. Drop the people who don’t support you.
The people who say, “Everybody has aches and pains,” are kind of right. Thousands of other people are also falling ill, and that’s why you need to speak out for them.
Don’t rely on a single doctor to “fix” you. You’re going to feel better due to your own ferocious fighting, intuition, determined investigation, diligent self-care and a team of health care practitioners.
Enjoy your freedom while you still can.
Thank God for every day that you aren’t in pain and your feet don’t swell up.
Remember that you deserve a properly functioning body and you deserve to feel good.
Don’t be scared because you will have an amazing man at your side and God holding you up.
Follow this journey on Tricia Barendregt’s Facebook page.
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