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Chronic Illness
Living With Chronic Illness
Suffering from chronic illness can change our lives in significant ways.
Posted January 9, 2022 Reviewed by Jessica Schrader
Key points
- Chronic disease can change the quality of lives.
- Chronic disease is often invisible to those around us.
- We must hold hope and have compassion for ourselves while we search for answers.
As far as medicine has come in treating disease, we still often come up short for those suffering from chronic and complex illness. These illnesses are poorly understood, and physicians often don’t know where to start and can get lost in managing the chronicity of a patient’s symptoms.
I regularly hear from patients that they have seen multiple physicians while trying to get a diagnosis or an understanding about why they don’t feel well. Their experience with these physicians usually leaves them feeling sad and frustrated as well as doubting themselves.
They describe stories of their visits and being told that it was due to stress, anxiety, or depression. At times, they are told it is because of their age or even their weight. This seems to happen disproportionately to women.
When we suffer physically for a long time and when physical symptoms change the way we live our lives, it is no surprise our mental health is affected.
Chronic illness alters the way we interact with our families, our colleagues, and our friends. It can change the way we move, breathe, and think. We can go from being highly functional, productive, and content to feeling like we don’t what will happen from one day to the next.
These illnesses are often invisible, though not always. When not obvious to those around us, we may feel obligated to repeatedly tell people about how we feel and why we cannot participate at a level that we wish we could.
Our lives are compromised.
So, we look for answers. We seek out physicians who can assist in investigating our symptoms and hope to find answers. Adding insult to injury, we are told our symptoms are in our head and if we can just learn to manage our stress and our anxiety, or sleep and eat better, then we would be cured.
But we know that is not always true.
The reasons behind chronic and complex illnesses are not always clear on exam and are not always obvious in the patient's history—unless a very comprehensive one is taken but unfortunately that takes time. And unfortunately, time is a commodity most physicians don’t have.
Basic labs and testing are usually normal and too often the investigation stops there.
It takes curiosity and a side of compassion and empathy to continue to pursue answers for those that are suffering. There are answers to be had and there is usually a common root that is causing the continued and persistent symptoms.
When we suffer, we need—and deserve—validation. When we are validated and believed, we are motivated to find ways to dive deep into our bodies and figure out what is happening and how best to advocate for ourselves.
Advocating for ourselves means we learn how to present our symptoms to physicians while at the same time recognizing their limitations in our current health care system.
We should prepare a list of our three most prominent and concerning symptoms. Symptoms that have a direct impact on our quality of life. Usually presenting with those critical symptoms helps the doctor know where to start, what to look for, and even how to begin a treatment option that has a chance of reducing suffering.
We can also feel comfortable to ask in return what the physician’s initial thoughts and concerns are with regards to our health and what the initial plan for diagnosis may be.
There may be a recommendation for therapy, such as talk therapy or cognitive behavioral therapy, and that is OK. Because while the illness is not due to our mental health, it does have an effect on our outlook, so therapy is always a good part of the plan. It can also help provide clarity into your illness and improve your communication with your doctor. And communication is crucial for ongoing care and a therapeutic relationship with your doctor.
Finally, it is important to maintain hope. Hope is not destructive, and it is not false. It helps us make sense of our suffering and gives us purpose to continue our fight to regain control in our lives. It can motivate to find a way to be present, be happy, and find joy and gratitude.
To find a therapist, please visit the Psychology Today Therapy Directory.
