When my sister was diagnosed with a neurodegenerative autoimmune disease in her early 30s, with her first major flare-up manifesting as a sudden loss of eyesight (which has since returned thankfully), it shook me to my core. It felt different from finding my father on the floor some years prior, face white as a ghost and writhing in pain due to a heart condition, before he was taken on an ambulance. It also felt different from seeing my mother bed-ridden for a year while I was in high school for another autoimmune disease and subsequently repeating hospitalizations over the course of many years for an array of reasons.
While seeing each family member suffer this way has affected me, seeing my sister be struck with a serious chronic disease relatively young in her life, with her whole future ahead of her, hit me differently. My older sister whom I looked up to so much, by my side literally from my first day on Earth. It filled me with fear for what the future held for her and sent me on what I now see was premature grieving on her behalf for the life I thought she was losing. Over the years, though, I witnessed that chronic diseases can teach us much. It can teach us to draw on a well of inner resilience we may not have even known we had, it can humble us, it can teach us to appreciate things we may have otherwise taken for granted, and it can force us to pursue paths we may not have initially chosen but paths that are more carefully considered.
At the same time, there is no doubt that the journey of a chronic disease is tough. The impact can be manifold and complex, beyond the physical restrictions, ranging from emotional distress, stress on intra-family relationships, education or professional life changes, lifestyle or aspirational limitations, and financial burden, among others.
As such, it is no surprise that research has shown there is a link between chronic diseases and mental disorders like depression. And it can work in different ways: in some instances, depression appears to be triggered by the chronic disease, such when the central nervous system is affected in disorders like Parkinson’s disease or multiple sclerosis, or when the endocrine system is disrupted, such as in hypothyroidism. In other cases, lifestyle limitations imposed by the chronic disease can lead to a gradual withdrawal from activities that had previously been a vitalizing element for the individual, leading to a depressive state.
Dealing with depression in conjunction with a chronic disease is not only difficult, but it can also have overarching implications for your prognosis. Studies have shown that the coexistence of a mental disorder such as depression is a major determinant of disability and impaired quality of life in many chronic diseases and that response to treatment may be poor unless both conditions are simultaneously addressed. Not only that, untreated depressive disorders often become chronic, further adding to the burden of a chronic disease.
And if you have a loved one with a chronic disease you know that the impact of living with a chronic disease extends to the care-taking family members as well. The psychological toll that having a family member with a chronic disease can take has been demonstrated in studies. Family members must also contend with the unpredictability and challenges associated with the lifestyle changes and limitations that care-taking can demand of the family members. It therefore becomes imperative to take care of the mental health of the family as a whole. As the common wisdom goes, you can’t take care of anyone else if you haven't taken care of yourself first.
Whether you or your loved one is grappling with the impact of a chronic disease, it is worth taking some moments to consider how you may be able to fit mental health care in your overall regimen. It’s not easy - you are likely overwhelmed with the immediate tasks of managing the chronic disease. But it doesn’t have to be perfect - it can be small walks when you have a small pocket of time, journaling when you have a second, reading for a mental change of scenery, talking to a therapist on a schedule that works for you, even if that’s every few weeks (as opposed to the oft-prescribed weekly sessions), or whatever else that will give you some relief. Find what works for you, start small, and stay consistent whenever you can. There’s only one of you so treat it with care.
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