It can be challenging to live what people consider a normal life when you get reminders every day, throughout the day, that you live with numerous health conditions.
We all know that person—the one you avoid asking, “How are you?” You don’t ask because you know their response will be much more than you wanted. Did you want the details of their latest blood work? Or hear about their recent knee injury? Want to listen to their frustration over sitting for hours in waiting rooms? Did you know they were prescribed yet another medication?
No one wants to be around that person. For emotionally healthy people, no one wants to be that person either. After cardiac arrest, I found out first hand how easy it is to become that person.
As someone who has seen over 45 doctors and medical providers in just over eight years, I can say from experience—it’s hard to escape.
I read an insightful article in Psychology Today, 4 Illness Identity States and How to Work With Them, by Katie Willard Virant MSW, JD, LCSW. It shows how chronic illness can affect one’s identity and self perception. They are: Rejection, Engulfment, Acceptance, and Enrichment.
Ultimately, enrichment is the ideal identity state to have. You’ve seen war veterans or professional athletes who have experienced a tragic accident. Many of them, after much hard work, use that illness to inspire others to greatness. None of us can imagine what it took for them to overcome the impossible, only to turn around and encourage others with less tragic lives, for the most part.
I’m thankful to have doctors who are passionate about their work, and deliver genuine care to me because of that. I shared that article with one of my doctors. He further explained that people with chronic illness have a primary illness identity state, but we also move from one to the other. That can be based on circumstances, changing health status, and even our mood.
I have numerous health conditions that have various symptoms, so I get reminded of them every day. As a fellow cardiac arrest survivor and friend put it, the moment you survived cardiac arrest was as if someone handed you luggage you didn’t ask for. You have to carry it around with you the rest of your life, every day, all day. No one can carry it for you, and you can’t skip a day.
Many of my doctors find it amazing that despite not breathing for 11 minutes, I can still drive and I can feed myself. Do I sometimes drop my fork? Frequently. Do I sometimes knock over my glass instead of picking it up? Too often. Do I stub my toes or crack my elbows from running into walls or furniture in my house? More times than I can count. Those are friendly reminders of my health.
Everyone stubs a toe occasionally, or bumps into furniture. I have balance and coordination issues, plus movement disorders and dizziness. Cracking my elbow through a doorway in my home hasn’t happened just a few times. It’s a matter of how frequently. I’ve gone for several rounds of neurological and occupational therapy, and it’s helped me to function better. I’m grateful for it.
Each doctor, therapist, or provider tells me up front they want to set expectations. That means therapy will almost definitely help me improve from my current state. It also means I must acknowledge that I will never be back to what I was before a brain injury. So each doctor and therapist are very hopeful, and also realistic.
Practically speaking, that means potentially I may spill things less often, trip less often, and remember to get a fork instead of a spoon to eat eggs at breakfast. That also means I still do those things. I can’t avoid them.
Managing chronic health conditions can feel like a part-time job. It’s not just the symptoms. Any given day might include: scheduling follow-up doctor appointments; rescheduling appointments that were cancelled by the doctor; ordering medications on schedule so I don’t run out; battling, when necessary, my health insurance company to pay for prescribed medications, tests and therapies ordered by specialists; doing therapy exercises at home consistently; and refilling medication pill boxes, trying not to be confused why a pill that was always rectangular and yellow is now white and round.
Do I want to talk about these issues with every acquaintance I see in public? No. People love and care about me, and I find that humbling. So people do ask me how I’m doing, and their concern is sincere. How do I answer that? I’m fine? I’m not. Today I spilled coffee on myself, and I hurt my knee again. Nobody wants to hear that, and I got tired of hearing myself say it.
Anyone living with neurological disorders or other chronic conditions would rather not dwell on those things. We wish to live life just like others do. In fact, not being able to live life just like others do is part of the frustration, discouragement, and struggle of carrying that luggage I didn’t ask for. I don’t wake up thinking about my symptoms. I just get reminded of them within the first 15 minutes of my day.
Has illness ever been my identity? I’d like to think not, but those around me could answer objectively. At the least, I’ve jumped in the water of illness engulfment—not for desire, pity or enjoyment, but because it’s challenging to escape.
Is illness my identity? No.
Is it my reality? Yes.
I’ve chosen to make a deliberate, frequent evaluation of my identity when it comes to chronic illness. That choice is because I felt engulfed too many times. These days, when someone asks how I’m doing, my response depends on the relationship. To some people, my response is, “I’m fine.” To others, I say, “It’s rough, but I’m taking steps forward. Thanks for asking.”
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