Dealing with Mental Health Issues While Living with a Chronic Illness

Dealing with Mental Health Issues While Living with a Chronic Illness
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Mental health is a significant yet overlooked aspect of dealing with a chronic illness. While it may be taken into consideration, it’s not often treated with sufficient seriousness.

Continual learning and adapting to a new way of living can be stressful. Losing relationships, adjusting to using assistive devices, and finding effective coping mechanisms to deal with something like Friedreich’s ataxia adds extra pressure.

When preparing to take on any challenging life situation, it’s best to have a healthy brain. It is difficult when others can’t “see” your illness though it affects every aspect of your life.

According to the National Institute of Mental Health, “The health effects of depression go beyond mood—depression is a serious medical illness with many symptoms, including physical ones.” The post on the NIMH website lists some of the symptoms of depression including feeling sad, irritable, or anxious; feelings of hopelessness, guilt, or worthlessness; loss of pleasure in hobbies; fatigue; headaches; pains and aches; unexplained digestive problems; cognitive and memory issues; insomnia and other sleep problems; changes in appetite; weight gain or loss; and suicidal thoughts.

Uncertainty about medical issues and future progression can lead to severe anxiety. It’s scary having to deal with something unpredictable and trying to figure out if you will be OK in the future.

When I was diagnosed, I didn’t understand depression. I thought I was just a sad feeling that anyone in my position would experience. But then I started to realize it was more than mere sadness — it was sometimes debilitating. Physically, I would be feeling great and asymptomatic, but then my mental health issues would kick in and knock me on the ground.

Many of us will face mental health problems whether or not we have a chronic illness. If we are dealing with an ongoing condition, mental health should be considered when managing symptoms and treatment protocols and other elements, including enrollment in clinical trials.

Those with a mental illness can benefit from monitoring and treatment with appropriate therapies and medications. Speaking to your neurologist and other specialists about your mental health can help them to understand how you’re handling your health challenges overall.

Attending medical appointments, constant testing, and blood draws, as well as staying on top of the latest news related to a specific rare disease community take a toll on the human body. One person can only do so much to get ready for the transition to being a patient.

I have started my own journey by trying to figure out my mental health issues and how I deal with them, and by learning better coping mechanisms. I can’t fully explain what goes on in my mind. I’ve learned to acknowledge my problems and accept that I need help with my mental health.

I try not to rely on Google to self-diagnose. This resource from the U.S. Department of Health and Human Services and this one from the Canadian Mental Health Association might be useful to help you figure out your next steps. Remember, you are not alone in this fight.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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4 comments

  1. Barbie Miller says:

    A much needed conversation! Sometimes I feel like depression is largely overlooked when you have a more obvious medical issue. Thanks, for sharing.

    • Frankie Perazzola says:

      Thank you for reading, Barbie. It is definitely over looked, I hope the rare disease community will be able to make this more main stream and not so taboo to talk about.

  2. Kathleen Woods says:

    My son was diagnosed at 9 years old with FA, however symptom signs were there at six and seven years old. He was in a wheelchair at the age of fourteen.
    Depression would come and go for him in his teens but he had his video games to fill the void since many of his friendships were fading away. Video games were his passion, the strategy and immersion into “avatars” were his saving grace. In his late 20’s he started having a hard time seeing his video games on a big screen even and started dropping his controller on the floor. Slowly this was the beginning of signs of his psychosis, anxiety, PTSD and personality disorder that was later diagnosed. We took him to a psychiatrist, and he prescribed drugs which helped somewhat, however he still saw strange things and people. He slept a lot, meds induced but still had major breakdowns, so hospitalization was the only way to get him properly diagnosed and tested. This happened in his mid to late twenty’s. More drugs were offered. He finally had an MRI. It showed brain atrophy left in his temporal lobe, which can mean his short memory is also compromised. Thankfully, he remembers the past fairly well. 😉
    Now 33 yrs.old soon 34, the side effects of his meds were causing more physical problems as well as sometimes complicating mental issues more than what they were intended to do. FA has taken way way too much, physically and mentally and now he has been blind for the last for 5 years with a decreased ability to process things in general. Because of it all, he can not do much of anything but sit in his wheelchair for short periods of time or lay in bed, which has been more comfortable as of late. We as parents, try to engage him with humor and as much stimulation as we can. Sometimes he says to us, “get away from me,” and talks to what we calls “his friends” that are inside his head. That’s where he survives and is happy, laughs, gets angry and (sometimes with the more demon like folks) pretty violent. He also has a girlfriend over there… wherever over there is? 🙂 In some ways this is good solace and a place for him to visit, if you will and he seems to be very creative there. So we are left with what ever works, if not drugs, then the places he retreats to.
    His pacemaker keeps him alive and well, He has no other health problems per se. He is OFF all psychotic drugs now and is much better for it other than some short outburst. He does take blood thinners and heart failure meds. Sorry this was long, however, there is no short version here as we continue to navigate an ever-changing landscape. I’ve been taking care of my son for 33 years ( now 7/24) and what an adventure it’s been along with affording us great life lessons in patience, understanding and gratefulness.
    Lastly, because of a longer life than predicted, I believe that the FA’ers that are living longer are peaking in on the road to mental illness, not everyone of course, but I hear more and more of this occurring to our kids in the FA world.

    • Frankie Perazzola says:

      From what I know, Kathleen, FA is typically diagnosed in younger people. I was a later onset and didn’t become symptomatic and until college.

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