Living with chronic illness feels much like a sea churning within.
Therapy for Chronic Illness is useful in treating one layer of chronic sickness or chronic pain. At the bottom is the baseline problem in the body causing the chronic illness. This is something like POTS or cancer. The second layer is the physiological symptoms. Here you find dizziness, joint pain, exhaustion, etc. The top layer, where therapy is helpful, is the psychological contribution to the body’s suffering. This is the stress your teen experiences because of and about the disorder. Your teenager probably has a level of isolation and modification to regular life that is depressing. Also, your teen may experience fear of causing a flare-up with increased activity. These psychological aspects of chronic illness and chronic pain/injury decrease emotional and relational quality of life, which we all know leads to slower physiological healing.
Counseling helps a lot with the top layer. So why should you consider therapy if your teen has chronic illness or pain? To reduce isolation, strategize about how to work through fear of relapse when the fear limits activity your teen is capable of, focus on purpose that can be achieved even with physical limitations, and work towards finding joy even when your teen isn’t happy. In other words, some form of counseling or support for chronically ill teens is essential.
An Example Case: Therapy for a Teen with POTS
When you have something like POTS (Postural Orthostatic Tachycardia Syndrome), you can spend a lot of time feeling dizzy. Some people find they faint. This especially happens when they get too hot or go from lying down to standing. It also occurs at random. Knowing you could faint without warning and that you are apt to feel very dizzy at any time causes fear of feeling that way.
Several years ago I saw my first POTS client. I don’t even know how she came to see me for therapy because I had no experience with chronic illness at the time. In fact, I didn’t even have my own diagnosis of lupus yet (although by then I wasn’t feeling well on a regular basis). This sweet, gentle, kind teenager was living with constant anxiety. It turned out she was really, really afraid of getting dizzy. When she had been at her most ill, the room spun so much that she dared not even open her eyes. She spent days and then months in bed.
So, how did therapy help her? She was sent to me because I had experience using cognitive-behavioral therapy with teenagers. When it became evident that she had already done a lot of the medical work necessary to live tolerably with POTS, then I realized she had the aforementioned layering to her symptoms.
Layering for the Teen with POTS
At the root of this particular teen’s issues was POTS. The second layer was her miserable symptoms. She felt a lot of brain fog, dizziness, nausea, and fainting without much warning. The top layer for her was a fear of fainting unexpectedly. It generalized to fear of dizziness because to her that was a sign fainting was likely. She developed a lot of anxiety. To control the possibility of fainting, she lay in bed for hours every day. She became physically weak and socially isolated. This increased her anxiety. But, what does anxiety cause if it rises to the level of panic? It causes brain fog and dizziness. So now, how was she to tell which was which?
After she attended the fabulous Mayo Clinic PRC in Rochester, MN, she came home knowing how to manage a lot of her physical symptoms (the middle layer). She still had dizziness and brain fog related to anxiety. Therapy made a significant impact on the top layer of her suffering as she was taught to use cognitive behavioral therapy methods to confront her fear of dizziness and associated anxieties. In her case, the Mayo Clinic doctors told her there wasn’t a direct cure for the bottom layer of her illness (POTS), but that it could be tolerably managed. Because of hard work, her life improved enough for her to return to school and start socializing again.
Counseling for Chronic Illness
How does therapy help with this? Counseling isn’t medical healthcare. So, it doesn’t help at all with the root cause of your child’s disease. Counseling also has little impact on the middle layer of the cake, which is the physical discomfort that you and your teen seek to manage with medical intervention. Counseling for chronically ill teens is quite helpful with the top layer of the cake. It can help your teen learn to discern when pain is caused by a physiological process in the body versus when it’s caused by stress and anxiety about the illness. By reducing stress, anxiety, loneliness, and depression, therapy for chronic illness helps bring the intensity of suffering down a notch or two.
Support for the Family
The counseling process also helps families living with the person suffering from chronic pain and illness. You have to walk on a tightrope of doing for your teen where they can’t without being an enabler. You must not do for them where they can do for themselves. Firstly, you will create a learned helplessness in your child. Secondly, if your teenager does all he can, then they can retain as much physical and emotional strength as possible. It’s just that it’s incredibly difficult for a parent to know which side of the line they are on. You don’t want to convey a lack of sympathy, but you also don’t want to prevent your teenager from living as fully as possible. Therapy can help you ferret out the mixture of flexibility and discipline your chronically ill adolescent needs from you.
Helping teens grow and families improve connection,
Whether your teen is suffering from POTS, cancer, an autoimmune disease, or one of the many other thousands of things that can go wrong with the human body, living with chronic illness is hard. These include breathing exercises, regular exercise, better sleep, distraction, and proper emotional support. While none of these steps will cure the chronic condition, they are steps that can mitigate some of the misery.
Living with a chronic condition is lonely for an adolescent.
Physical Ways to Help Teens With Chronic Illness
Breath Techniques
Breathe in deeply. Hold your breath. Breath out slowly. Breathe in deeply. Hold your breath. Breathe out slowly. Controlling breath is one of the relaxation techniques that is helpful for teens with chronic illness and chronic pain. Slowing the heart rate down through concentration on breath control helps lower anxiety. Lower anxiety means a more relaxed body. This usually translates to a reduction in physical suffering.
Imagine breathing calming, healing breath into the area of pain. Picture the breath filling the lungs, exchanging oxygen for carbon dioxide, and adhering to your red blood cells. Picture it moving through your body into to area(s) of discomfort. Imagine the area of discomfort relaxing. Imagine your red blood cells taking the carbon dioxide away from your pain, exchanging in the lungs, and exhaling from the body. With that, picture some of the pain leaving the body too.
Exercise
I read an article that people with chronic injuries tend to baby their injury. They probably don’t mean to. I believe they fear causing a setback or that it will hurt while exercising. However, this researcher went on to discover that people who were pushed to continue some form of exercise eventually found their pain receded. In many cases it disappeared. For this reason, I love the idea of asking your treating physician for a physical therapy referral whenever appropriate. PT helps me manage my lupus symptoms, and I have attended at least a few sessions per year ever since getting diagnosed. Consistent exercise in line with my doctor’s recommendations has also helped control my pain. I hope it can do the same to help your teen living with chronic pain or chronic illness (more here).
Sleep
You already know this. I know you do. However, it cannot be overstated. Protecting sleep is one of the most important things people with chronic illness can do. My rheumatologist told me right from the outset that this was the single most important change to make in my life. She said I must lie down for 8 hours per night so that I at least have the chance to get enough sleep. Now I guard my sleep time carefully. You must also prioritize this for your chronically ill teen as it is a key way to help them feel somewhat better.
Mental Techniques To Help Teens With Chronic Pain and Chronic Illness
Distraction
My aunt just had knee surgery. She has been in considerable pain for the past 4 weeks since the operation. A couple days ago she said to me, “It’s the weirdest thing. When I get on the phone with someone and start chatting, the pain recedes.” That didn’t seem strange to me. The brain is amazing in the ways it focuses. When we are enjoying relationships and conversation, other things fade. When we have something urgent to focus on, we tend to lose sight of everything else. While extreme pain will always cut through to the forefront of your conscience, dull chronic pain can recede somewhat. So, make a concerted effort to help your teen focus on something challenging that isn’t overwhelming. Then your teen dealing with chronic illness or chronic pain will have some relief.
Emotional Help for Teen With Chronic Disease
Empathy and Understanding
This is where a support group and/or therapy play a huge role! Sitting with someone who understands the frustrations, need for modification in activities, the sadness, and the fatigue that comes with constant suffering and vigilance against suffering is a big deal. Your teenager often feels like the only teen who is living a less carefree life than his or her peers. It gets lonely. Working with someone who understands the feelings that come with chronic pain/illness helps your teen make better choices. Your teenager is more likely to find purpose in the suffering too. According to the National Institute of Health, people who have support from a counselor or peers who really get chronic conditions have better psychological health, shorter healing times, and better preventative behaviors. I would add that it is easier to find meaning in the suffering when talking to others who also understand.
At Teen Therapy OC we are here to help. You are welcome to call or connect with us if your child is living with a chronic condition. Not only do I (Lauren) live with one, our whole team is happy to listen or pray with you as you navigate this extremely challenging journey.
If your teenager is living with a chronic illness, then you know your teen feels different. The limitations your teen faces vary from other teens, but there are things in common. Every chronically ill teen we’ve worked with at TTOC hates feeling “other” than peers. Each young man or woman wants to do what other teens are doing without limitation. CBT for chronically ill teens can help alleviate some of this emotional pain.
Cognitive Behavioral Therapy helps with this. Chronically ill teens need to find the precarious balance between doing as much as is possible while not pushing too hard. If your son or daughter pushes too hard, then they can experience a physiological setback. This is more isolating. If your teenager spends a majority of time trying to think about how to prevent a flare-up of physical symptoms, their life becomes entrapped to careful rule following instead of freely enjoying the moment.
How Does Cognitive Behavioral Therapy Help Chronically Ill Teens?
Cognitive Behavioral Therapy (usually called CBT) leads your child to challenge his or her self-imposed emotional and sometimes physical obstructions. One chronically ill teenager I had as a client had come down with POTS and EDS as a 16-year-old. She had formerly been the life of the party, the most energetic, and the most athletic of her friends. Because she could no longer sustain the energy needed to play those roles, she completely withdrew from her social circle. We used CBT for chronic illness to challenge her belief that she was “only a valuable friend if I can entertain everyone.”
Another young woman was dealing with a physical problem that caused her to feel dizzy and faint. Because of this, she developed a fear of going out in public if she wasn’t in a seated position. I can 100% understand how this happened to her; I would fear it too. However, she underwent treatment, which stopped the fainting. However, the dizziness continued. Whenever she felt dizzy, she feared fainting to the point where she wasn’t going out with friends at all. The social isolation became depressing. We used CBT to challenge her fear of feeling dizzy. Once she faced that fear, she started socializing more, which led to increased joy.
CBT Increases Mental Flexibility in Adolescents
CBT can increase your chronically ill teenager’s mental flexibility. Oftentimes teens want to do things the way they did them before they got sick. However, this is no longer possible. Your teenager has to learn to still participate in as much as possible, but it is okay to modify activities. We challenge all or nothing black and white thinking patterns about life. Your teen can likely do more than he or she thinks. Rarely, I see a chronically ill teen who consistently overdoes it. Usually, the effort to control flare-ups and miserable symptoms causes your teen to pull back farther than is necessary. For example, rather than no longer seeing friends, why not have friends come to the house to watch a movie? There are a lot of ways to do part of something.
For your teen, partially participating does a lot to keep up joy, connection, and overall mental health. If these are better, then your teen is more likely to retain some level of physical activity. As you can see, this improves overall health.
Chronic Illness and Chronic Pain Aren’t Easy for Teens
At TTOC we know having a chronically ill teen isn’t easy. We know this isn’t what any of you signed up for or how you wanted life to go. We agree that it stinks, and we wish you weren’t facing this. However, learning first to accept the unacceptable and then to live life as fully as possible is the best option your teenager has right now. CBT can help with this.
Please feel free to reach out with questions. While we don’t pretend to have all the answers, we might have a few things that can improve your teen’s quality of life. Read more to find out how.
Hello, I’m Lauren! If you notice your teen struggling, you might be feeling helpless, hopeless, frustrated or concerned as a parent. Try to remember, there is hope. I want to help your adolescent feel better. My hope is for them to enjoy their life again. I want them to feel confident they can handle whatever situations arise.
