Life with Chronic Illness
Written By: Heather Rolland, LCSW and Dr. Beata Lewis
From asthma to Alzheimer's, chronic diseases are a case study in “mind-body connection.” The way we feel impacts the way we feel, and never is this more painfully apparent than when we are told “this isn’t going to go away.” In addition to physical conditions, addictions, depression, anxiety, and other mental health conditions may be chronic or recurrent. Some chronic diseases are impacted by lifestyle, both positively and negatively, and some are utterly unaffected by even the most saintly of lifestyles. And many chronic illnesses, despite the havoc they wreak upon our bodies and minds, are invisible to those around us.
Navigating life with a chronic illness often unfolds in phases. The search for a diagnosis – a rollercoaster of hope and fear, denial and disbelief – usually comes first. Once diagnosed, the initial adjustment to life with this disease and its treatment gets underway. Then, with any luck at all, there’s the stable (ish) phase of just plain getting on with it – life in the new normal. Let’s take a closer look at each of these phases.
The Hunt for Answers
This phase is rough: hope and fear jockey for primacy as we scour the internet and visit specialist after specialist. The unknown is scary: we can’t help but wonder and “what if” ourselves into spiraling stress with the risk of worsening symptoms. A name – “celiac disease” or “bipolar disorder” – can bring both relief and loss. While it’s great to know why you’re experiencing your symptoms, and having a name to hang your hat upon can really help with the anxiety, diagnosis means the loss of your identity as a person who doesn’t have this disease… that is, a healthy person.
Depending upon how you viewed your health before diagnosis, this loss may feel overwhelming, like a sucker punch. The loss of the self that believed we could make this go away by drinking more water, getting enough sleep, eating gluten free meals, or doing hot yoga, is real. Like any loss, it deserves to be grieved. However, unlike the losses society deems worthy, you may find that your grief is met with a lack of validation or even dismissive and toxic positivity.
Adjusting to Treatment
Figuring out how to live with your disease is hard enough, but as often as not, figuring out how to integrate treatment into your life can be maddening. After surgery, I needed to eat 6 small meals a day, and also take medication 4 times a day… on an empty stomach. Designing a schedule to accommodate these warring priorities felt like an SAT level math problem. Thankfully my doctor made changes, but for a few very complicated days, my stress level was through the roof. And we all know how stress impacts post-surgical healing.
Expect and embrace a deluge of emotions once treatment begins. While it’s normal to want to feel better right away, some medications take time to kick in. And some other types of treatments, like psychotherapy, offer both challenge and solace. The physical changes you experience as your body adjusts to treatment may also be unsettling. After all, you were just getting used to all your symptoms, as unpleasant as they likely were. More changes can be disorienting, even if welcomed.
You may feel better physically as sleep or appetite stabilize, or pain is reduced, but emotions can creep up on us during this phase. No longer white knuckling it from appointment to appointment, we feel a bit better, and have the support of a treatment team, and whoa: it’s as if someone turned on the firehose. Raw emotion just pours out. All the repressed stress, worry, grief, and fear that we shoved aside while we fought to get to appointments on time and retell our tale of woe yet again may well come pouring out. You may feel even more fragile than before treatment started. I’m here to tell you that’s okay.
The New Normal
Do you hate that phrase as much as I do? I hate that it’s become a cliché, but I have to admit it does work as a way to conceptualize what comes next. Who and what we were before we “got sick” is now our history and the new normal involves crafting an identity that acknowledges your diagnosis, treatment, and whatever lifestyle changes you have had to incorporate. A client put this very nicely by saying “I need to figure out which parts of me persist.” What aspects of your personality crossed the bridge with you and what parts got left behind?
Life with a chronic illness can be a bit like living with a wound that won’t heal. Every day we need to remove the dressing, clean the wound, inspect for signs of infection, monitor healing, and assess current needs. Then we need to rebandage it, doing our best to tend to it as well as we can so that tomorrow it’s still in as good shape as possible. But it’s always there and we don’t get days off without consequence. Being aware of the wound and caring for it requires emotional energy. We may not have energy for other things we used to focus on, now that we have had to add wound care to our day.
Tips for Dealing with Your Own or a Loved One’s New Normal
For a loved one:
Resist the urge to advise, fix, or help. Your newly diagnosed beloved has probably experienced enough advice to last a few lifetimes. If I had a nickel for every time someone told me a folk cure for my tummy troubles, I could have paid for medical school. Ask how you can be most supportive, and listen to the reply. Then do what your loved one asked of you.
Resist the urge to “cheer up” your beloved. While it’s natural to seek silver linings or identify unexpected upsides to their situation, keep those thoughts to yourself for now. You probably wouldn’t rattle off a list of positives if your beloved experienced the loss of a close friend or family member; try to remember that this loss might feel that intense and monumental to your loved one. Respect their grief.
For yourself:
Try a support group. Facebook must have a group for almost every diagnosis under the sun – free, accessible, and well, better than nothing. Online public self-help groups are not a substitute for professional psychotherapy, but they can provide a place to vent and be supportive. Offering someone else support can ease the isolation and separateness the illness might create.
Google your diagnosis and search for a “.org” that provides information and resources for people diagnosed with that condition. These online information clearinghouses can provide a sense of being seen and understood. That, in and of itself, can be nice.
Allow yourself to change. Call me Captain Obvious, but trying to continue to be who you were before (waves hand vaguely) all this… may be impossible. There is a beauty in surrender. Let go of old rules about who you were (e.g. I’m someone who goes out dancing until 2 am every weekend; or I’m someone who must clean the kitchen, including mopping the floor, every night before I can go to bed). You may find that by letting go, you make space for new parts of yourself to surface.
Find beauty and joy wherever you can. This might sound dangerously close to toxic positivity or saccharin gratitude, but here’s my logic: your illness will give you plenty of opportunities to be bummed, anxious, frustrated or resentful. Feel free to add your own grumpy emotions to my list. Allowing yourself to experience wonder, joy, and awe may help you balance the rough times. In fact, I suggest you stalk these opportunities – visit a museum or gallery even when you’re tired, or sit on a park bench and enjoy the drizzle on your skin. Let yourself laugh too hard at stupid Tiktok videos or get choked up at the emergence of daffodils.
Express yourself. Take some time to figure out what feels organic and right: maybe journaling with paper and pencils, maybe tapping on the keyboard (laptop or Casio). Singing, poetry, creative movement, writing… find some way to let your inner experience have physical form.
If you tend to sink into low moods when your mind wanders around the hallways of My Illness, try audiobooks or podcasts. Not necessarily about your illness or about healing or self help or anything like that (although if that appeals, go for it). Mediocre fiction is fine. Anything that engages you and takes you out of your own thoughts can be just what the doctor ordered.
And remember, as you navigate life with a new diagnosis, you don’t have to strike off alone. A professional psychotherapist can be a wonderful support and resource as you adjust to a new sense of self. Email us at info@mindbody7.com to discuss any of these issues further.
Mind Body Seven clinicians offer treatment in Brooklyn and via teletherapy for adolescents and adults. If have not worked with us and want to get started please contact us here, so we can set you up with the clinicians that best suit your individual needs. If you are an existing patient get in touch with us here to set up your next appointment.
