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Because the physical impact of spinal muscular atrophy (SMA) can be all-consuming, you may be dealing with psychological effects that you aren’t even aware of, but which you should definitely address so you can improve your quality of life.
According to the National Institute of Mental Health (NIMH), people with chronic conditions are more likely to develop symptoms of depression than those who are not chronically ill. This also works the other way around, with mental well-being affecting disease activity. People who experience depression are at an increased risk for developing certain chronic illnesses, compared to those who are not depressed.
Although some people with SMA may veer away from treating mental health conditions because they feel it might take their attention away from dealing with SMA, the reality is that the opposite is true. If you’re suffering from depressive symptoms, anxiety, or mood disorders, treating them with medication such as antidepressants, psychotherapy (also called “talk therapy"), or both "may help improve the physical symptoms of a chronic illness or reduce the risk of future problems,” NIMH says.
Your health care provider can work together with mental health professionals, such as experts in psychology or psychiatry, to ensure that you stay both mentally and physically healthy.
Anxiety is also common in people with chronic conditions, particularly as they deal with the unknowns of what might happen as a result of their disease. This can lead to associated conditions as well. For instance, sleep issues, including insomnia as well as extreme oversleeping, have been found to be associated with a lower health-related quality of life in people who have chronic conditions.
“Anyone dealing with chronic illness of any kind can really come up against challenges, particularly when there is no cure, or there’s uncertainty in the progression of the illness,” said Dr. Sarah Gray, a pain psychologist with Integrative Psychology in Arlington, Massachusetts, and an instructor of psychology at Harvard Medical School.
There are several reasons why having a chronic health condition may put people at a higher risk of mental health difficulties, according to Mental Health America. For example, you might feel isolated because of spending long periods of time in the hospital, or you’re not as social as you used to be. In addition, you may spend excessive amounts of time worrying about your condition, you might suffer inflammation in the long-term because of the stress, and you may be going through chemical and hormonal changes.
In some cases, you may feel depressed or anxious because you aren’t getting the right medical care. Research published in 2011 found that people who felt stigmatized by health care workers had a decreased quality of life, at least in part because they accessed health care services less frequently than people who did not internalize stigma and anticipate a negative response.
This situation can prevent some people from seeking care for their mental health conditions, Dr. Gray noted. “Unfortunately, sometimes there can still be a stigma around seeking help for mental health concerns. Thankfully, that's changing and continues to improve, but that can still exist.”
It’s important to consider mental health when you are dealing with SMA. A study from 2016 indicates that “psychological interventions to reduce emotional distress may improve both mental and physical [quality of life]” in people with SMA. The study authors found that those who had less severe SMA were found to have worse mental health quality of life scores, and the authors hypothesize this may be because they might spend more time comparing themselves to people without SMA than people with more severe cases do.
Psychosocial factors can also affect how children and adolescents experience SMA. The authors of a 2021 study noted that children with SMA and their parents often held incongruent views about the severity of the diagnosis. The authors noted that “a shared perception between child and parent may benefit the child’s [quality of life],” so it is important for there to be open communication among clinicians, parents, and children with SMA.
In some cases, you may not recognize that you’re dealing with depression or anxiety because those feelings came on slowly over time, and you didn’t notice how strong they became. Or perhaps you have gotten so accustomed to being blue or stressed that you assumed this was just a way of life now. But recognizing when you may actually have a condition that requires a professional evaluation is important.
“In my experience, and working with so many patients at different phases and stages, the type of stress that comes up early evolves over time,” Dr. Gray said. “Often, people along the way will find ways to cope, to draw on that inner strength that's there, and hopefully get linked in with a number of supports, but the stressors change over time. And that requires ongoing support.”
Symptoms of depression may include:
Common symptoms of anxiety can include:
If you are experiencing these types of feelings, talk to your health care team or contact a mental health provider for help.
Your health care team will make the determination about what type of treatment you should pursue. In addition to the treatments that your physician recommends, you can also find other ways of treating depression and anxiety with lifestyle changes and therapies that go beyond medication.
Dr. Gray recommends such tools as cognitive behavioral therapy and biofeedback for coping with the many unknowns inherent to having a chronic disease.
She also works directly with people to identify the specific stressors that may be troubling them. “For instance, if there's a family member who is bringing up some conflict and the patient finds it particularly difficult to navigate setting boundaries with a certain person, then we might work on concrete, specific tools to address any troublesome interactions there,” she said.
It’s essential that you remain on your treatment regimen for SMA as you treat your mental health condition, while also pursuing lifestyle modifications. One 2020 study found that for older adults with multiple chronic conditions, maintenance behaviors — such as physical activity and treatment adherence — were the most critical components of self-care to combat depression. The researchers also found that “even mild [depression] symptoms can be associated with poor self-care maintenance,” emphasizing how important it is for people with chronic conditions to be screened for depression of any severity.
In addition, make sure you have a supportive team around you, which can help when dealing with SMA. A 2020 study found that people with certain chronic conditions reported family as the most important psychosocial resource they had. Positive relationships with other people “are assumed to contribute to physical and mental health either directly by meeting basic human needs, or through enhancement of coping performance by buffering stress,” the study authors noted.
Remember that your health condition may have an effect on every area of your life, Dr. Gray said. “Relationships, activities that one may enjoy — they may be impacted by the chronic illness and the symptoms,” she noted. “Your sense of self can be affected by the change in activities and relationships, so that in and of itself can really, validly lead to feelings of loss and worry.”
Some risk factors for developing mental health issues — as well as for having chronic illnesses — are easier to modify than others, according to the Centers for Disease Control and Prevention (CDC). Stressful life circumstances, a history of trauma, and a lack of social support may be out of an individual’s control. But diet, exercise, and drug use are among the “modifiable risk factors” the CDC identifies for reducing one’s risk of chronic disease.
You can also consider using mindfulness as part of your road to alleviating mental health issues.
Dr. Gray points out that “at its core, mindfulness is really approaching the present moment with openness, with curiosity, purposefully, and just being aware of what’s around you. It takes a lot of practice, repetition, and time — it’s really important for people to know it doesn't just happen.”
Through mySMAteam, you can join an online social network for those living with SMA. In doing so, you will gain access to a social support group of people who are facing similar challenges and who understand what you are going through.
Are you experiencing emotional changes? How are you managing them? Share your ideas in the comments below, or start a new conversation on mySMAteam.
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Sarah Gray, Psy.D. is an Instructor of psychology at Harvard Medical School and a psychologist in the Department of Psychiatry at Massachusetts General Hospital. Learn more about her here.
Anika Brahmbhatt is an undergraduate student at Boston University, where she is pursuing a dual degree in media science and psychology. Learn more about her here.
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