If You Constantly Worry About Your Future With Chronic Illness
Is there really any point in worrying? I believe what will happen will happen, no matter how much you wish upon a star, how often you repeat a certain calming mantra to yourself, how much you research a doctor’s expertise, no matter how often you think about the future or how many possible scenarios you’ve run in your mind. Worrying doesn’t affect the outcome. It may prepare you a bit, but it may also scare you more than necessary and do more damage. Worrying, thinking, planning does not create the future. It’s dismal, sure, but I think it’s the truth.
Worrying is a waste of time, yet I think it is unapologetically human.
I know my parents would do anything to take away my many medical issues, that it is the ultimate goal, but there is only so much that can be done to make me “better,” and “better” is not synonymous with “healthy” when managing multiple chronic illnesses. Nineteen chronic diagnoses later, here I am!
Am I any less because my body has failed me and doesn’t allow for the second half of that wish fulfilling? Arguably: Yes; Definitely: No. I believe happy is a choice. I choose happy.
I can’t control the situation that I have been thrust into but I can control how I react to it. I’m OK with reaching 50 percent when 50 percent is the most I can achieve. I will never be healthy, but I may be better than I am now. Now may also be the peak or the plateau of my medical advancement. That is OK. I think there is no need to worry about the future and miss out on the Now (capital “N”). Worrying downplays the joys and triumphs of Now.
In “The Fault in Our Stars,” Hazel Grace takes eight prescription medications three times a day. I have 17 prescription medications (because my joints suck at being joints, my bones suck at regenerating and staying strong, my eyes suck at seeing, my endocrine system sucks at being an endocrine system, my digestive system sucks at digesting and harvesting nutrients, my connective tissues suck at holding together, my immune system sucks at fighting the unwanted stuff yet insists on an internal civil war) along with vitamins because my body sucks at regulation and I take Benadryl (most often multiple times a day) because my body likes to react too strongly when it finally decides to react.
Honestly, most of my body has forgotten how to function as it was “meant” to, but sometimes I just think it wasn’t “meant” to work as a human body typically functions and that worrying about getting it to be “normal” is useless. It isn’t normal and the great and general “we” that is my treatment team and I are trying to trick it into operating as most human bodies do, focusing on the fundamentals first even though “we” are sure that there is no swaying certain processes to release their (literal) death-grip on me. For me, I’m happy for all that I am able to do, all that I have done and will do in the future and it is OK if I do things a bit differently. Goodness knows, “different” is “normal” for a Katie.
Different isn’t too bad. In fact, being different is not too shabby at all!
If there is one thing I have learned throughout this journey with multiple chronic illnesses, it’s that acceptance takes time, even if you are unaware of your own disapproval. I thought I was OK with my illnesses, but I used to hide them. I used to keep it to myself, come up with excuses to cover up my disability, then my invisible illness started to become not-so-invisible and I had to re-evaluate how I was handling my own worry versus my own joy in the life I was dealt.
For all of my fellow Spoonies just trying to navigate through life with a chronic illness, please just know that everyone comes to terms with diagnoses in their own time and that is OK. However you choose to handle your illness is entirely up to you, because it is a very personal and very real part of your innermost identity. It won’t always be easy to come to terms with never being healthy or fitting that norm set forth by society. It may never be easy to listen to holiday songs that wish you a happy and healthy new year, seeing other people your age participate in activities that you know your body won’t allow, hearing people say “health is wealth” and knowing you will always be poor if that’s a true measurement, having to listen to strangers and even well-liked acquaintances offer miracle cure after miracle cure that you know will have no effect on your condition, knowing the possibilities of your future with a chronic illness, and worrying about what lies down the road.
But I sincerely hope that someday, some way, somehow you learn to be more than OK with being your true self, illnesses and all. At the end of the day, your illness chose you, but I hope you choose happiness, like I have decided to do. Try not to waste your days worrying, because you are more than worthy of living a joyful life right now.
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Katie Taaffe is currently a graduate student at UCF trying to navigate through life and find detours when medical issues block her path. It isn’t always easy, but with the support of fellow spoonies, friends, family and her medical team, she’s learning to take things one step at a time while enjoying the little things in life. She always wears mismatched socks, painting is her happy place, and superheroes give her hope.
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