Few life events outweigh the significance of a chronic medical condition diagnosis.
Trying to make sense of the diagnosis can provoke a range of difficult emotions for both patients and loved ones alike—including fear, loneliness, anger, anxiety and depression.
While the severity of symptoms varies by condition, coping with a chronic medical condition or diagnosis is never easy. Despite the challenge, Karolina Lieponis, licensed clinical social worker at Meridian, says it is key to maintain a positive perspective.
“Those who cope well seem to be constantly grateful for what they have and often tell me, ‘Things could be worse,’” she explains. “Perspective is the greatest gift I have been given from those I have worked with over the years, especially helpful during difficult times in my own life.”
Lieponis also notes that maintaining a regular schedule, continuing to enjoy hobbies, connecting with others and finding a strong support system—including a therapist—can be highly effective for helping patients navigate this challenging life event.
“I hope that everyone [struggling] has the courage to find support for themselves, in whatever way feels best for them,” she says. “For [my patients] who choose individual therapy, I feel lucky to have been invited on their journey toward creating a healthier, more manageable and more joyful life.”
Read on below for a lightly-edited interview in which Lieponis discusses how patients and loved ones can cope with a chronic medical condition.
What are the most important behaviors for a patient who is attempting to manage a chronic medical condition?
One way to help make chronic illness manageable is to continue participating in as many “normal” activities as possible. It’s important to continue attending family celebrations, socializing with friends, participating in a faith community, working or volunteering, traveling and having hobbies.
Yes, your participation may look a little different than it did before due to physical limitations or other restrictions. Nonetheless, those who continue to live life to the fullest are often those who feel like their diagnosis is more manageable. Things like a sense of community, a sense of purpose, focusing on what you are capable of and the ability to experience joy are important keys to happiness for everyone, including those with chronic medical conditions.
What specific, day-to-day actions do you recommend for patients?
There are day-to-day actions that all of us, including those with a medical diagnosis, can participate in on a daily basis to improve our quality of life. Take some time each day to:
- remember the things we are grateful for;
- engage in activities that bring us joy;
- connect with family and/or friends (in person, via email, via social media or on the phone);
- move our body (however you are capable);
- nourish our bodies with food, in moderation, that is healthy and delicious (if possible);
- and participate in something that gives us a feeling of purpose greater than ourselves.
Creating a schedule can also be a useful way to motivate ourselves to get out of bed, get dressed and get going! Some people have a natural schedule because they work or have other responsibilities. However, if you don’t, creating a schedule for yourself can be incredibly powerful.
A chronic medical condition diagnosis must be especially devastating for teens and children. How does a young person best cope?
It would take me a long time to talk about all the ways we help children and teens cope. However, a good starting point is honesty. By honesty, I mean that medical providers, parents and caregivers should be honest with the child or teen regarding their diagnosis and provide age-appropriate answers to all their questions.
This is a difficult time for them, and they need to know that they can trust the important people in their lives. If children are not given up-front, honest information about their diagnosis—for example, they are not told they have “cancer”—this can lead to significant distress. Part of the issue is that children are perceptive, and also because it is likely that someone will accidentally say the word “cancer” even if the parents request this word not be used. I have found that the consequences of being lied to far outweigh the benefits in the long run, even though this is often done with only good intentions.
It can sometimes be difficult to know what age-appropriate information or language to use with a child or teen regarding their diagnosis and treatment. Most children’s hospitals have child life specialists on staff who are educated to help with this exact topic. They are also usually available to talk to siblings who may have questions parents don’t quite know exactly how to answer. There are also several providers at Meridian who have experience talking with children about difficult topics like medical diagnoses.
What are the most challenging demands of your work as someone who provides crucial support to patients in this extremely difficult situation?
The most challenging part of my work is that it does not seem “fair” that some people have to struggle with very debilitating medical conditions, and I don’t have a good answer for people when they ask me, “Why did this happen to me?” This is a common topic discussed in therapy.
Apart from the person who has been diagnosed, the experience must also be incredibly difficult for loved ones. How can these people best care for both the patient and themselves?
There is an old saying that says, “You can’t pour from an empty cup.” This is especially true for caregivers. I encourage caregivers to ensure they themselves are also engaging in [life-enriching] activities; … it is crucial to take breaks and have support, too. Caregivers often feel guilty taking breaks or asking for help, [but it] is physically and emotionally hard work.
If you have limited support from family and/or friends, there are some organizations (both for-profit and not-for-profit) that may be able to provide some respite for caregivers. These organizations tend to be age-specific and sometimes diagnosis-specific, so ask your medical team for resources. Additionally, if a person is already connected to a church or faith community, these organizations often have volunteers willing to help with a variety of tasks. Support groups and/or individual therapy can also be useful and necessary for caregivers and loves ones.
In what way does spirituality play a role in the lives of people coping with a chronic medical condition?
For some people with chronic medical conditions, spirituality provides comfort and hope. For others who are not spiritual or do not participate in a religious community, it simply does not play a role. Unfortunately, for some people, their beliefs or the religious community they belong to make it even more difficult to cope with their medical diagnosis. This can happen when their spiritual or religious perspective diminishes hope, instills fear or discourages (sometimes punishes) the individual from pursuing recommended medical treatment that could improve their quality of life. Hospital chaplains and/or social workers can often act as advocates in these situations, especially if the patient is a child.
I know that you are a relatively-new addition to the Meridian team, having come on board in 2020. What do you hope to achieve in this latest chapter in your journey as a mental health care provider?
I am excited to be one of the newest members of the Meridian team. I hope to be able to help people cope with the challenges that life has given them, and at the same time help them live their lives to the fullest despite them.
Karolina Lieponis, L.C.S.W. obtained her master’s degree from Loyola University and has been a mental health care provider for 13 years. She has extensive experience supporting patients in hospital settings who are up against new diagnoses, chronic illnesses and caregiving stressors. Her additional focus areas include anxiety, depression, health issues, work-life balance stressors, spiritual struggles, relationship challenges and infertility.
Struggling to cope with a chronic medical condition diagnosis?
Photo by Federico Respini via Unsplash.com