I recently heard someone say that the first 1-2 years of chronic illness are always the hardest because you are simultaneously managing new distressing symptoms for which you have no tools, going to doctors searching for answers, trying new treatments, tracking their efficacy and side effects, and reorganizing your life around the changes in your body. But this statement made me recognize that there is more to say about the experience of being chronically ill long term, about what happens after those first hard years are over. Now that I am coming up on 10 years of chronic illness and dynamic disability, I wanted to reflect on some of the lessons I’ve learned during that time, and what I wish I’d known about chronic illness from the start.
CN: Extensive discussion of the experience of chronic illness including dietary restrictions, pain, dismissive doctors, and grief.
You’ll Find Your Baseline
Every time I have a conversation with someone whose chronic illness is significantly different than mine, one or both of us will have the reaction, “I don’t know how you manage all of that. That sounds so hard.” These comments are distinctly different from the common, abled iteration, “I don’t think I could live like that,” which stems from a desire to avoid thinking deeply about what living like a disabled person would entail. Instead, these comments stem from an intimate knowledge of the ways symptoms and the adaptations you make to treat them can completely turn your life upside down.
But the truth is that no matter what assembly of symptoms your illness throws your way, if you find tools that prevent them from escalating, you find your new baseline of living your life and then you just… do it.
When you are looking from the outside at someone’s symptoms and treatment regimen, you are missing a few things.
When you are struggling with a new symptom, there’s a lot of intrinsic motivation to find a solution because you don’t want to be experiencing that symptom anymore! I’ve already written about the risks and resource management of trying new treatments that make the process fraught. But once you find something that works, even if the treatment itself is resource-intensive, you have a direct incentive to keep doing it. You know from being in your own body how much better you feel if you follow your treatment regimen. It is so much easier to manage complex dietary restrictions or elaborate pain management routines when you know it helps.
And then there’s the fact that when you are incorporating a new treatment regimen into your life, you are going through the process of forming a new habit. Habits aren’t just things you decide to do every day. Habits are an external manifestation of a structural change in your brain. Once you have repeated the same action in the same context enough over time, you no longer have to consciously choose to do that action and instead your brain is able to do the action on autopilot. This is why you can be thinking deeply about a personal problem while driving home and you don’t end up in a different neighborhood. When the illness is your own, you are constantly adding new habits to your routines, slowly building them up over time. To a person who has none of those habits, they can only imagine what it would be like to consciously choose to do each of those individual tasks back to back every day. But thankfully, your brain is lazy and knows how to do it an easier way and while building those habits might be hard in the beginning, the longer you do them, the easier they get.
Health is Always Changing
While some health issues have remained constant throughout the last 10 years, my daily routines and treatments look completely different from how they did 8 years ago.
For example, in 2018, I developed chronic bladder irritation and the primary treatment recommended to me was dietary changes. I spent a number of months when I couldn’t eat anything spicy, acidic, anything with caffeine, anything highly concentrated and anything fermented or cultured. I suddenly had only a handful of meals I could eat and I took to eating just those, over and over again, for weeks on end. I sometimes felt despair about losing so many of my favorite foods (chocolate and tomatoes were the two hardest) because, at the time, I thought I would be eating this way indefinitely.
But then I learned my bladder issues were caused by pelvic floor dysfunction and that while diet was a component of treatment, I had other options which, once I pursued them, proved very effective. Five years later, I still keep certain very acidic foods in moderation but I am no longer stuck with nothing but mild, next-to-flavorless repetitive meals. Instead, my diet has transformed yet again to a different set of (less intense) requirements that never would have been necessary for me to follow five years ago.
I used to need to shower every day to manage my pain; Now it’s better to shower infrequently. I used to be incapacitated by Mast Cell reactions from the beginning of May through the end of August, and now I have a moderate decrease in functionality for just a couple of months. Exercise used to cause my pain to flare; Now I need daily walks for my digestion. I used to require PT exercises before anything vaguely physical or I risked a flare; Now I sometimes go several days without PT and don’t lose any functionality.
You’re Never Done Problem Solving
The more challenging part of the ever-changing nature of chronic illness is that sometimes you lose access to effective tools and have to search for new ones, or a new problem pops up that you now have to assess and find treatments to experiment with. Plus, you don’t always know where you are in the process of seeking your next solution. If I read old blog posts about my symptoms, I’ll sometimes find a description of a treatment method I used and how it helped me, when I know now it turned out to not be effective. For your own sanity, it makes sense to describe your health and the treatments for it in definitive terms and trust that assessment in the moment but sometimes it does turn out that you were wrong.
Your Well-Being Isn’t Always Dependent on One Amazing Doctor
One of the main strategies for chronically ill people in accessing medical treatment is, unfortunately, continuing to seek out second and third and fourth opinions until you find a doctor or specialist that listens to you. This is a harrowing process and as a result, the thought of losing that doctor can be terrifying.
I credit a huge amount of my progress in pain management to my two original physical therapists who were two of the most knowledgeable about EDS in my state. When I learned that one of them was retiring, I got really scared. Who would I see instead? What if they couldn’t fix me the way Rachel could? What if we didn’t get along? But now I’m more than a year into seeing the new physical therapist and while I miss the closer relationship I had with Rachel, my body continues to make good progress with my new PT.
I had similar trepidations when I learned my primary care doctor was leaving her practice for a position at the local hospital. On my first visit with my new doctor, my blood pressure was higher than I’d ever seen it. I was nervous, to say the least.
But several appointments in, he found a way to earn my trust. When I raised my questions about POTS, he set me up with a tilt table test right away. But despite having many of the symptoms, my results were negative. I didn’t have POTS.
I was confused and worried. If I didn’t have POTS, why did I need so much salt and water all the time? Why did taking showers wear me out? Why was my circulation so bad? My new doctor saw my concern and he said something I’d never heard a doctor say before: “Just because the test came back negative doesn’t mean you don’t have it. You might have a mild version or you might have something similar. I know it’s frustrating to not have answers but if what you’re doing makes you feel better, then keep doing it.”
There are plenty of bad doctors out there and chronically ill people are unfortunately more likely to see the worst of them since our bodies are not compatible with the systems these doctors need to work within. But just like teachers, therapists and coaches, different doctors can have different perspectives and tools to offer. Leaving one for another does not always mean a net loss.
Medical Trauma is Comparable to Childhood Trauma
Years ago, a friend of mine came to me, deeply distraught because a new doctor had yelled at them when he heard they were there to be treated for chronic pain because in his words, “we don’t do that here.” I knew the feeling they were experiencing well since I had had my own experiences with dismissive doctors and heard so many horror stories from other friends who dealt with chronic illness. My friend expressed confusion to me about why this experience had been so destabilizing, which also echoed my own experience.
It was then that I recognized that abuse or mistreatment at the hands of doctors is uniquely awful because it is their literal job to take care of us. They don’t just have power over us, we come to them at our most vulnerable when we are in need of help, and the bad ones use that opportunity to hurt us instead.
I think the confusion around the depth of the impact that abusive doctors can have stems from the fact that we think of exchanges with doctors more like exchanges with acquaintances or strangers, where it’s a little easier to shake it off and recognize that that’s about them not you. But a doctor/patient relationship is much more similar to a relationship with a parent or caretaker– harm done by a caretaking family member is way more damaging than if a friend or an acquaintance does the same action. It’s strange to have that kind of vulnerability and self-worth tied up in a person we’ve had little to no interaction with before so we don’t expect it to happen.
Motives for Health Professionals
Looking at my own experiences with dismissive doctors, nurses, and techs as well as those of others helped me recognize a pattern that might explain their hurtful behavior. There is a very common motivator for deciding to work in the medical world: The feeling of solving someone’s suffering can be deeply affirming.
However, if that is someone’s motivator for working with sick patients, sometimes the inverse is also true: Someone’s suffering failing to resolve can be distressing or even invalidating of their worth or skill. Chronic Illness, by definition, is a form of suffering that cannot be fully resolved. For someone who defines their success and even their worth as a person by their ability to fix patients, chronic illness patients are walking talking evidence of their failure.
Knowing this potential motivator in no way excuses dismissive or hostile behavior toward chronically ill patients but I have found it easier to not blame myself for their reactions if I keep this concept in mind.
Make Room for Grief
It’s not an exaggeration to say that my life turned upside down after I injured my sacrum. Every routine was completely revamped. My energy was focused on resource management at all times. Every decision was calculated and analyzed because, without that level of oversight, I’d run out of energy before I could ensure I had access to crucial things like clean clothes, cooked food, or the ability to finish my shift at work.
When you are in the midst of that kind of all-consuming survival mode, there simply isn’t time or space left to devote to actually feeling the emotional impact of watching your body transform into your primary cause of suffering and the loss that accompanies that transformation. I couldn’t stop and think about how scared I was that my physical therapy exercises would never be enough to actually reduce my pain and how badly I missed the ability to start my day without being chained to the requirement of exercises before anything else. Dwelling on the fear that this daily chore may never work would only make doing it harder.
Given that those first few years are the hardest when adjusting to chronic illness, it makes perfect sense that our instinct is to push that grief and fear and resentment away, to try to accept what we cannot change in order to prioritize survival, to just focus on putting one foot in front of the other.
But once the chaos has died down a bit and we’re finding our routines, we frequently never return to revisit that grief that we pushed away. Unfortunately, this does not dispel the grief. It never leaves us. And it can feel silly to feel consumed by emotions caused by the loss of something that happened several years ago, especially when you have spent those years being so constantly dedicated to being fine with the fact that it happened.
Losing the person you were before your illness, hurts. Losing access to more energy, focus, freedom, in all areas of life, hurts. Letting go of beloved hobbies hurts. Watching friends or family who aren’t able to adapt to your changing needs fade from your life, hurts. Discovering that if you fall into the world of chronic illness and disability, there is no societal safety net for you, hurts. Moving through a world not built for you, hurts. The grind of existing in a body 24/7 that spends far more time fighting with some form of suffering than not, hurts. At some point, it will be necessary, and valuable, to face that fountain of grief.
Learn to Balance Apathy Vs. Acceptance
While pain is absolutely real and cannot be fixed simply by mentally pushing through it, it is also true that one of the most effective methods of pain management is accepting the existence of the pain and taking your focus off of it. Pain is intended to be an alarm to your brain that something is wrong and needs to be fixed but in chronic pain, that alarm is simply wrong. Research shows that if you hear that alarm and continue to believe that it is an indicator that you are injured and in danger, your experience of the pain will actually worsen. If instead, you mentally reframe the pain as a normal part of your baseline and take your focus off of it, it actually relieves some of the experience of the pain.
There are lots of places this principle applies to chronic illness. Being in a constant state of wanting your symptoms to stop is stressful and stress causes symptoms to worsen. Continuing to fight for your old life back can prevent you from making changes in your life structure that are necessary to stabilize your health. Accepting that illness is your baseline makes it easier to create habits, systems, and plans that actually match your current needs.
But at what point does this acceptance turn into apathy? Knowing that EDS is incurable and that I have good physical therapists, I stopped looking into additional treatment options or further pain management long ago. But more recently, I’ve spoken to some other EDS patients who are using protocols I’ve never heard of and it occurred to me, I may have inadvertently blocked myself from accessing additional improvements to my quality of life by accepting that my life would always look like it does now.
Don’t Deny Yourself Care
A similar problem can arise when you encounter a new acute health issue, like an infection. Last fall, I got tonsillitis for the first time ever. My primary symptom was pain when swallowing. When the pain got worse late one night, I called a nurse hotline to ask if I should go to the ER. The nurse seemed most concerned by my report that I was following all the guidelines for pain management and was still worried I wouldn’t be able to sleep that night. This response surprised me because I was so used to simply accepting and living with pain, it didn’t occur to me that what I had might be serious. Once at the ER, I was again surprised when I was evaluated and given stronger pain meds, further emphasizing to me that I was tolerating more pain than actually necessary.
I had made a habit of only seeking additional solutions to my health issues in response to obvious emergencies or new health problems and I might be missing out on helpful treatments as a result. I was unintentionally denying myself the care that I deserved.
My experience with long-term chronic illness is likely quite different from many other people’s. For one thing, I’ve been exceedingly lucky in receiving the financial support from my family that I need to focus on my mental and physical health instead of pushing myself to work and exist on very little money. I have a good health team that has been motivated to find effective tools for me. I have a very supportive partner and community that never second-guesses my needs or the severity of my issues. And I have a beautiful home that has itself become a daily source of accommodations for me in ways my previous apartment was not.
And even with so much help and support, it’s likely that I will always be chronically ill and dynamically disabled, to varying degrees. They call it chronic illness for a reason. But I think with the hard-learned lessons I’ve outlined above, my next 10 years of chronic illness will be substantially easier than the first.
About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. She specializes in educational writing about civil rights, disability, chronic illness, abuse, and Dissociative Identity Disorder. Her work has been published in Ms. Magazine blog, The BeZine, and Splain You a Thing and in 2022, she released a self-published book of poetry, “Pet: the Journey from Abuse to Recovery“. You can find her @KellaHannaWayne on Facebook, Instagram, Pinterest, Medium, and Twitter or view her wide range of creative projects on KellaHannaWayne.com.
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