Impact of Chronic Illness on Mental Health: a personal journey
Leaya here.
In honor of October being both Dysautonomia Awareness Month and
Mental Health Awareness Month, I wanted to share a little bit about my personal experience with you.
We often hear the saying “your mental health is just as important as your physical health” - which it is.
But if you have a chronic illness (or illnesses) like me, the balance between navigating mental health challenges and physical challenges simultaneously is a complex but delicate balance.
Physical health affects your mental health, and your mental health affects your physical health.
But how does chronic illness impact mental health?
Hey! I'm Leaya :) Chronic Illness warrior, advocate & educator!
Grief
There are many experiences that can cause grief, and a chronic illness diagnosis is one of them.
If a person is born with chronic conditions, social interactions or negative comments from others can create a sense of “what if things had been different” thought process.
If someone develops their chronic illness later in life, often there was a very different lifestyle that was lived prior to diagnosis. They could have been very active, socially engaged, working a full-time job with hobbies, and overall having a higher quality of life.
There is a deep loss of the sense of self and sometimes a disconnect from what your identity once was to what it is now. Decrease in the quality of life,
increase in the severity of chronic illnesses, and addition of new illnesses adds to the feelings of grief.
Anger
Anger is one of the 5 Stages of Grief and can come and go in waves.
Feelings of anger are sometimes apparent in individuals with chronic illness because there’s a loss of control and sudden change that can completely change the trajectory of someone’s plans for their own life.
Anger can also occur due to frustration with navigating the healthcare system. Some medical providers who are not familiar with certain medical conditions will sometimes gaslight patients into thinking their conditions are not real, especially if the symptoms are not as obvious as they’re used to.
Often people ask themselves “Why me?” or “What did I do to deserve this?”
It’s important to know that anger is a normal part of the grief process, especially early on after receiving a diagnosis.
As someone who has what’s considered an “invisible illness”, it can be very irritating to constantly hear comments like “but you don’t look sick”, “you’re too young to be sick”, or other ignorant comments because it puts the individual who is chronically ill in a position where they must defend themselves and the legitimacy of their illnesses.
It’s important to point out this happens even more for invisible illnesses because people don’t visually see the physical symptoms that are occurring internally, and it adds to the stigma around both chronic illness and mental health.
Depression and Social Isolation
Depression is very commonly seen in individuals who have chronic illness.
Like grief, there is a deep sense of loss of the life that was once lived.
People will sometimes try to cope by withdrawing from others and/or discontinue activities they once enjoyed (whether by choice or not). Appetite changes can occur.
If someone’s support system isn’t willing to take the time and understand the changes going through your life, friendships and relationships can be damaged or lost.
Feelings of hopelessness and despair arise.
Over time, people can experience suicidal thoughts if they don’t see another way out of their current situation.
Anxiety
Anxiety can sometimes stem from “future thinking.”
For people who have a chronic illness, the future brings a lot of uncertainty.
The path isn’t always linear, and life can be filled with major transitions including job changes or loss, relationship roles shifting, difficult decision-making, and changing health status to name a few.
What may be tolerable activities one day and resemble life before illness may be impossible activities the next, and you never know when it’s going to change.
Additionally, being told you have anxiety as a chronically ill person sometimes feels like a slap in the face from a healthcare provider.
Even if anxiety is truly present, many patients who have been to the emergency room for actual physical symptoms or a flare-up end up with discharge paperwork that lists the diagnosis as anxiety and not the chronic illness without any tests or treatments having been performed to alleviate some of the other physical symptoms happening.
These symptoms can include tachycardia (a high heart rate), chest pain, shortness of breath, brain fog, a tremor, and others.
Many medical providers aren’t willing to educate themselves on conditions they aren’t as familiar with, and it leaves patients feeling helpless when they are trying to seek help.
That process in and of itself can cause anxiety, even if it wasn’t the reason the person sought treatment in the first place.
For me, personally having both Anxiety and Dysautonomia, understanding which condition causes physical sensations can be confusing and difficult to differentiate which condition is being triggered.
Since my autonomic nervous system already malfunctions, the “fight or flight” feeling triggers the sympathetic nervous system and creates both a mental and physical acute stress response.
Overwhelm
All these feelings in and of themselves can cause overwhelm.
The constant turbulence of changing emotions, life circumstances, trying to plan your future, illnesses fluctuating, and having to be your own healthcare advocate can be exhausting and lead to burnout.
When life keeps going and sometimes when it feels like you’re trying to play catch-up, it can be a lot to handle.
If you have to manage employment, self-care, a family life, exercise (when safe to do so), upkeeping a home, personal hygiene, a social life, rest, doctors’ appointments, medical treatments… it can easily be overwhelming and not feel like there’s enough hours or energy in the day.
The average person with a chronic illness will have more medical expenses, time away from work, and workplace accommodations than the average healthy person.
(Source: https://pubmed.ncbi.nlm.nih.gov/33586284/)
You're Not Alone
All the above circumstances can happen one at a time, or they can co-exist.
It can be an emotional roller coaster when trying to navigate mental health and chronic illness.
If you are experiencing any of the above topics and want to discuss your personal experience, please consider talking with a therapist.
Therapists are very much a part of the healthcare team and treatment plan.
Please know that you are not alone on this journey.
Many others who have chronic illness have similar experiences, and finding a community who has shared experience is a crucial part of the chronic illness journey.
Advocating for yourself and educating the people around you are ways you can help break the stigma around both chronic illness and mental health.
Thanks for reading,
Leaya
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