Chronic Illness & Anxiety: A Chicken & Egg Scenario

Anxiety and depression are prevalent for those who suffer from chronic illness. In fact, one study found that 40% of Inflammatory Bowel Disease (IBD) patients had abnormal anxiety levels and this drastically increases to 80% when the patient is in a flare-up . With chronic illness typically, there is a feeling of loss of control over your own life which can in turn cause stress, anxiety and depression.

Chicken or Egg?

I was diagnosed with IBD 9 years ago and while I have learned to (mostly) manage the symptoms of my disease over time, I have yet to master the feelings of worry and anxiety. After having a bowel resection surgery, I have been in clinical remission but not without its bumps along the way. The fear of the unknown can do a number on one’s mental health. The possibility of a flare-up always lives in the back of my mind. I can remember the countless visits to the hospital, procedures, medications, and extreme pain. I was barely able to take care of myself, and now that I have children, I worry that if I were to have a flare-up, I wouldn’t be able to take care of them or participate in their lives in a meaningful way.

I know that having a chronic illness has increased my anxiety levels, but does stress and anxiety exasperate my symptoms? Research shows that stress can worsen symptoms and cause a relapse of remission. From WebMD “When someone is under stress, the body gears up for a fight-or-flight response by secreting certain hormones, including adrenalin, as well as molecules called cytokines. They stimulate the immune system, which triggers inflammation. In people whose ulcerative colitis is in remission, this sets the stage for the return of their symptoms, known as a flare-up.” This is something I’ve experienced and heard from talking to fellow chronic illness sufferers. Lack of quality sleep and environmental stressors have often caused a revival of symptoms which can be a slippery slope to a full-on flare.

Anxiety definition (from Merriam-Webster):
an abnormal and overwhelming sense of apprehension and fear often marked by physical signs (such as tension, sweating, and increased pulse rate), by doubt concerning the reality and nature of the threat, and by self-doubt about one’s capacity to cope with it.

Stress definition (from Merriam-Webster):
constraining force or influence: such a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation
Anxiety = Fear

When speaking about Generalized Anxiety Disorder it is often associated with people who have irrational fears or worry for no reason. When talking about sufferers from chronic illness, often the anxiety is derived from perceived AND real fears. From my experience, my anxiety stems from a fear of a past trauma reoccurring. Fear of pain, a flare-up, of being out with no access to bathrooms. Fear of foods and eating, procedures, fear of damage caused by long term use of medications (i.e. Remicade can cause an increase in cancer). Fear of missing work, fear that people don’t understand, fear of drug/procedure costs and benefits coverage. This can be scary stuff and can plague your thoughts even when in remission.

From diagnosis to remission the fear still exists, it just changes in size and scope. A newly diagnosed patient can go through stages of grieving and without having the tools to manage the illness it can be very scary. Fast forward to remission, chronic illness has many layers and can be unpredictable. No matter how much you’ve done to manage your illness, there is still a possibility you can have a relapse. The feeling of helplessness can trigger depression, but on the flip-side depression can slow recovery. This begets a vicious cycle which can be hard to get under control.

Coping Physically and Mentally

Patients must cope with not just the disease itself but the mental health side effects of it. While I believe I’ve received excellent care from my Gastroenterologist, he deals with only clinical IBD symptoms so often the mental health aspect of the disease gets overlooked. It is important to bring up your emotional health to your doctor when suffering from a chronic illness despite the perceived stigma. Having that aspect under control could potentially help with physical symptoms. Anxiety and chronic illness can be a chicken and egg scenario where consideration must be given to both to have a holistic treatment plan.

Strategies for Coping With Anxiety:

Find your support: whether that be a close friend, family member, a fellow patient, or support group like Lyfebulb, knowing you aren’t in this alone makes a world of difference.

Don’t assume the worst: challenge those negative thoughts! Remember that you have survived thus far, and all those experiences make you stronger.

Try yoga, meditation, or deep-breathing:  Research has shown this to be an effective complementary therapy for patients with IBD.

Seek counseling – an impartial third party can help instill coping techniques

SOURCES: [Sharma P, Poojary G, Dwivedi SN, Deepak KK. Effect of Yoga-Based Intervention in Patients with Inflammatory Bowel Disease. Int J Yoga Therap. 2015;25(1):101-12. doi: 10.17761/1531-2054-25.1.101. ]
Cannabis is an increasingly popular therapy for IBD with cannabidiol (CBD) showing promise as an anti-inflammatory and tetrahydrocannabinol (THC) as a pain reducer and sleep-aid. [Ahmed W, Katz S. Therapeutic Use of Cannabis in Inflammatory Bowel Disease. Gastroenterol Hepatol (N Y). 2016;12(11):668-679.]

– Krystal Laferriere, Lyfebulb Ambassador (Instagram @xtra_ordinary_girl )

Seven Reasons Why the US’s New Mental Health Law Is Dangerous

(Photo: Agencia de Noticias ANDES; Edited: LW / TO)
(Photo: Agencia de Noticias ANDES; Edited: LW / TO)

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This week, President Obama signed the 21st Century Cures Act, touting the bipartisan mental health measure as “bringing to reality the possibility of new breakthroughs to some of the greatest health-care challenges of our time.” However, the reality behind this legislation is not quite what it appears to be.

The 21st Century Cures Act will increase the ease with which individuals can be involuntarily hospitalized in a locked ward, increase funding for institutionalized settings, and demand that states implement forced outpatient treatment in order to receive funding. Many media reports are suggesting that it will fix a broken mental health system, incorporate patient voices into clinical processes, decrease mass violence and modernize clinical trials. But will it really? Here are seven reasons why Obama’s signing of the 21st Century Cures Act is less than grounds for celebration.

1. Sandy Hook and other tragedies will not be avoided by the measures contained in this bill. There is no debate at this point about the fact that individuals who are diagnosed with serious mental illness are more likely to be victims of crime than perpetrators. Further, they are rarely violent in the first place.

Yet, the “reform” this bill seeks was formulated largely in reaction to the tragic Sandy Hook killings in 2012. It is a product of the assumption that “mental illness” is responsible for mass acts of violence, and that the answer is more psychiatric treatment, often treatment of a coercive and restrictive nature.

However, the story that doesn’t get told is that the perpetrator of that mass shooting was in psychiatric treatment and on numerous psychiatric drugs at the time of the killing. In fact, almost half of all of those who’ve committed homicide were on their prescribed psychiatric drugs at the time of offense. Moreover, forced treatment is associated with increased violence, as are some of the drugs being touted as the answer. Yet, with this bill, forced hospitalization in locked wards becomes a go-to response for an individual who is in extreme emotional distress.

Why does anyone think that doing more of what was already being done is the answer?

2. The “reform” actually sets back many advances made in the 20th century. While hospitals may be a source of respite and healing for many, taking individuals by force and locking them away in the name of “help” is akin to prison and has been ruled inhumane by the United Nations.

How is it that the public has been led to believe that imprisoning individuals who have committed no crime, taking away their privacy and rights, and forcing them to ingest toxic and brain-damaging chemicals for the rest of their lives are advancements? We can all look back and shake our heads in disgrace at the thought of blood-letting, insulin comas and lobotomies. Who will be shaking their heads at us in the future?

The mental health system as a whole has spun a story asserting that if an individual disagrees with a psychiatrist’s framework or understanding, then this is evidence of that person’s disease. This is true even if the dissenting voice is another mental health professional.

The treatments being promoted by this bill are, in fact, associated with increased violence, increased negative attitudes from clinicians, and increased discriminatory attitudes among the public. In turn, this may lead to worse outcomes, poorer quality of life, decreased employment and increased self-hatred.

Despite this, many alternatives to mainstream mental health care have arisen throughout the world demonstrating superior outcomes, increased satisfaction and decreased overall costs to society. This bill ensures that no such programs, in their current form, will ever find their way to the…

Sweeping health measure includes mental health, anti-opioid initiatives

Members of Connecticut’s congressional delegation are praising this week’s overwhelming, bipartisan passage of the massive 21st Century Cures bill in the U.S. House of Representatives, saying it will usher in mental health care improvements and provide $1 billion over the next two years for opioid addiction.

However, the multibillion-dollar bill initiated three years ago has its detractors, who note that funds aren’t guaranteed and must be approved annually. And while it softens stringent federal regulations to allow potentially life-saving drugs to hit the market faster, it doesn’t address skyrocketing costs of prescription medicines, opponents say. Patient advocates also cautioned that the rush to expedite new medicines and medical devices might lead to unnecessary injury, death, and a gambit of class-action lawsuits.

The bill now heads to the Senate, where it’s expected to pass next week in time for President Barack Obama’s signature before he leaves office in January.

While acknowledging the bill’s imperfections, the White House on Wednesday called it “critically important legislation.” The bill also addresses Vice President Joe Biden’s call for a “cancer moonshot,” investing $1.8 billion into research. It also adds nearly $3 billion to continue biomedical research initiatives geared towards diseases like Alzheimer’s.

Supporters say the bill will modernize clinical trials and spur innovations with a goal of getting treatment to people who need them more quickly.

U.S. Rep. Joseph D. Courtney, D-2nd District, commended the legislation this week, saying the bill also makes the fight…

Diabetes and Depression

Diabetes and depression is a topic I feel strongly about, but also one that is not easy to discuss. Many people with diabetes and relatives to those with diabetes do not want to acknowledge the psychological issues one can have when living with diabetes. These issues are not only related to the fact that diabetes is a chronic disease, that one has to inject insulin to survive, and that one has to modify diet, exercise, relationships etc etc.

In fact, John McManamy, author of “Living well with depression and bipolar disorder” says that a Kaiser Permanente study of some 1,680 subjects found that those with diabetes were more likely to have been treated for depression within six months before their diabetes diagnosis. About 84% of people with diabetes reported a higher rate of earlier depressive episodes. He goes on to say that a 2004 Johns Hopkins study tracking 11,615 initially non-diabetic adults aged 48–67 over six years found that ‘depressive symptoms predicted incident Type 2 diabetes. Women, in particular are at greater risk, according to other studies; and another study shows that this risk, among both men and women, persists even after controlling weight, caloric intake, smoking, and economic factors.

It has clearly been shown that depression is higher in people living with diabetes, and that this differs from other chronic disease. It is also clear that the depressive tendencies people struggle with are exacerbated by volatility in blood sugar, and can be reduced when control is improved. I recognize this, since I know that when I was “high” I felt tired, lethargic and often hopeless. This would lead to thoughts not moving fast enough, and frustration with my own capacity as a thinker. I would be sad about small things and be emotional about events that otherwise did not bother me. The worst part of depression triggered by blood sugar volatility is the feeling of loss of control and the vicious circle triggering poor management of diabetes which makes both the physical problems and the psychological issues worse!

My recommendation is as always to try to stay in control and when you do slip, ask for help! Being alone with your disease is the worst, and the concept of peer-to-peer mentoring helps, especially with more emotional issues than with medical and physical details. It is hard for a doctor or a nurse to understand the sense of hopelessness, fear of complications and the loss of control that we feel at times when living with diabetes. This is when a friend who also has the disease can help you tremendously by bringing you up in your mood, and down from the rollercoaster of sugar.

My other piece of advice is to reduce the simple carbs in your diet– it really helps you control the volatility. As you may have seen in children without diabetes, their mood is seriously affected by high sugar meals, and the subsequent crash is hard on parents and caretakers.

Lastly, exercise creates a natural surge in anti-depressive hormones such as serotonin and endorphins so adding exercise to your daily regimen will reduce the risk of depression.

I had a pancreas transplant in 2010, and since then my HbA1c has been normal with few glucose excursions. My mood and my energy levels have improved dramatically, but yet, when I eat a carb-loaded meal (rarely!) I do feel a high in the beginning, but then I dip and I lose my mojo. I feel lost and without control. I may have solved the sugar highs, but I am still vulnerable to lows in sugar and that is still my trigger for also feeling low in my mood.

Sugar is evil and I hope that in the future children will not be fed high-sugar meals and handed candy as rewards – it kills, mutilates and makes you sad!

Image of a woman siiting curled up on the ground

Five Public Health Needs for Digital Health Technology

Digital health technology has seen an incredible growth in the last few years, fueled by a combination of consumerization of wearable technologies, ubiquity of mobile devices, proliferation of technology incubators, attention by government health and regulatory agencies and involvement of large companies heretofore not focused on healthcare. The fastest path to widespread adoption of these technologies is the application to the most pressing public health needs. The mission of public health is to improve the public health and achieve equity in health status. A review of studies of text messaging for health demonstrates a general positive effect on health-related behavior. These findings, as well as growing demand for more economical, convenient, and outcome-oriented data-focused care are driving interest in digital health tools.

A recent report on public health state by state by the Trust for America’s Health describes the dilemma of increased general healthcare spending and increased public health needs with their associated decreased funding allocations. I would like to highlight what I see as public health issues ripe for digital health technologies, some of which have already spurred initiatives.

  1. Mental Health. The disappointingly slow recognition of mental illness as a medical problem is compounded by the paucity of human and digital educational, and monitoring resources in the field. While there are currently some technologies focused on mental health, their scope lies more in the consumer than medical realm. An interesting recent review of mental health mobile apps in the journal Nature discusses positive feasibility studies but a lack of robust outcomes data. In addition, some unintended consequences of at least one app were found. Tools providing support for medication adherence, urgent virtual visits with clinicians and self-management will have maximal effects in this sector.
  2. Opioid addiction. The National Institute on Drug Abuse has long recognized the potential of mobile health technologies for its mission. The Agency for Healthcare Research and Quality is launching a three-year $19M initiative focusing on…

ADA Calls for Integrating Psychosocial Care for People With Diabetes

The statement calls for delivery behavioral health services through a collaborative model when possible, both to share electronic health data and offer convenience and continuity for patients.

The American Diabetes Association has called for fully integrating psychosocial care into diabetes treatment, ideally through a collaborative model that asks during the first visit after diagnosis whether a patient is experiencing depression or distress. The statement is published in the December issue of Diabetes Care.

Healthcare providers—who may often be primary care physicians—should revisit the mental health and cognitive status of persons with diabetes, “when there is a change in disease, treatment, or life circumstance.” The statement calls for bringing caregivers and family members into this process, and for monitoring a patient’s self-management skills as part of this evaluation.

The statement calls on providers to form partnerships or “alliances” with behavioral health professionals who are well versed in the needs of those with diabetes. Ideally, these partners “should be embedded in diabetes care settings.” A joint location will allow sharing of records, including electronic health data, and maximize the effort to improve the patient’s disease management.

Collaborative care, which calls for putting primary and behavioral healthcare under one roof, is not a new concept; it was pioneered by the University of Washington School of Medicine, and its success specifically for patients who had both diabetes and depression was presented in the New…

Diabetes and Mental Health

It’s something that always goes together. It’s something with many factors. It’s something that you never get a break from. It’s also something that isn’t often talked about or factored into everyday care. It’s splattered with stigma, stereotypes, shame, and silence. Well, it’s actually two somethings. It’s type 1 diabetes and mental health.

Type 1 diabetes and mental health very often impact each other one way or another. Type 1 diabetes and mental health impact everyday life, but everyday life also impacts the two. You can never take a vacation from type 1 diabetes and mental health. It’s a rare event when mental health is factored into diabetes care. You see the stigma, stereotypes, and silence around type 1 diabetes and mental health constantly, but it’s also accompanied with silence and shame.

This all very much so applied to me for the majority of my life doubled with the fact that in my mind I could only be positive about type 1 diabetes and the fact that I had had few good experiences with counseling. In my mind, I was invincible ever since I was diagnosed at 7.

But soon that all changed- compounded with many years of living with type 1 diabetes, my studies in Social Work in college, my involvement in the diabetes community online and in life, hiding from the past and things I didn’t want to deal with, and the fact that I was going a million miles an hour with limited self-care.

Diabetes Burnout hit me with full force my junior year of college. I had faced a wall that for the first time I couldn’t climb over or burst may way through. My Diabetes Burnout lasted for months and under a cloak of silence and shame. I searched for information- I found some resources that didn’t seem a right fit for me, and I found almost no “me too’s.” I did however discover how wonderful and beneficial counseling was.

I came out of it eventually, but I was very different when I did. My thoughts on mental health were the biggest change for me. Self-care immediately became a regular part of my routine. I yearned for more me too’s, and eventually I made it my goal to be more honest not just to myself, but to the outside world about mental health, but especially mental health and diabetes.

My senior year of college came, and towards the end of the year so did a triple diagnosis of ADHD, Anxiety, and OCD. All of which apparently presented before the age of 12, but it was missed duee to the focus on diabetes and my mistrust of healthcare providers.

So again- something changed. With that change, so did my blog.

I’ve shared versions and bits of this story before in print and in person. Especially because only a few people probably wear their mental health on their sleeve.

But I hope for things to change. I hope for a diabetes community that doesn’t call burnout giving up. I hope for more research. I hope for a day that mental health isn’t a joke, that diabetes isn’t a joke, and especially that the two together are not part of jokes.

The truth of the matter is that I live with type 1 diabetes, ADHD, OCD, and Anxiety, but that is just a part of who I am. But these parts are very much together with other aspects of my life.

I have to check my blog sugar and give insulin many times during the day, and battle the OCD that begins to obsess over my continuous glucose monitor. I’m figuring out how to navigate ADHD and anxiety in the workplace. I’m still learning my triggers and figuring out what works for me.

And to be perfectly honest, this is mostly for me- a part of my self-care- I am not great at verbalizing how I feel- especially if those emotions aren’t positive, but I can do it through writing.

But I can’t lie when I hear or see someone say “me too” or I thought I was the only one- because it’s a nice reminder to keep doing what I’m doing, but it’s also a reminder that I am not alone.

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