chronic illness Archives - Page 3 of 3

Relating to Teens with Chronic Illness

Published on January 7, 2013

1760 views

A hallmark of being a teenager is rebellion. Puberty turns a once nice kid, into a hormonal, rebellious nightmare. No one enjoys puberty – one morning you wake up and the body you have been living with your whole per-pubescent life is no longer yours; it’s hairy, it smells, it’s awkward, your skin is constantly breaking out and half of everything you once loved is now uncool (your doll collection, your old friends, your parents, wearing matching outfits with your siblings, etc). Now add to this mix of hormonal hell, a chronic illness. Teens by nature want to rebel; but how do you rebel from a body that has rebelled against you.

It’s hard to treat teens, especially teenagers that have been dealing with illness the majority of their lives. Along with waking up one morning and hating everything, when dealing with a chronic illness that body hatred is one thousand times magnified. I have worked with young people with chronic illness before, and the overwhelming response is

“I want to be normal. I’ve had x condition my whole life and I’m going to have it for the remainder of my life. It’s not fair and I don’t want it.”

Just like any other teen, teens with chronic illnesses don’t want to be told what to do. Personally, when I was a teenager and in the hospital, I would disregard the advice of any doctor who tried to parent me. Chronically ill teenagers want to be treated like adults. If you are a doctor working with an ill young adult, talk to the patient – don’t direct the conversation towards the parents. At the end of the day it is the patient taking the pills and maintaining their care. All younger patients want is respect. They know their bodies better than you think and they just want to establish control in a relatively control free time of their lives. Treat the teen patient with respect and you’ll have much better results.

From Chrysalis to Butterfly: My Thyroid Journey

by Sarah Downing

Published on September 20, 2012

2702 views

Change is something that we fear
And yet we’re happy when it’s here
It may rob you of all that’s dear
But is often more positive than it may appear

Progress is another game
That’s just change by another name
If we open up our heart and mind
We’ll know treasures of a different kind

The word change is often something that people tend to shy away from, partly because it carries an air of uncertainty, but also because it is associated with a great deal of hard work! Sometimes we know that change has to come and that we have to proactively change something and in such cases we may feel as if we hold the reins, but there are also times when change is thrust upon us and it is up to us what we make of it.

We may struggle to accept the fact that we are capable of adapting to many different situations because, as I wrote above, change scares us. But sometimes it can help us to reap unexpected rewards. In the case of many of the people reading this (myself included), change was thrust upon us in the form of a chronic illness: thyroid disease. Many of us were uncertain what we were dealing with upon our diagnosis and once we were finally diagnosed we were angry and resisted this change – Why me? This isn’t fair! What now?

But when we get sick we have to go through a period of acceptance and realize that we have been presented with a challenge to overcome, whether we like it or not. While faced with these uncertainties and fears, it is okay to mourn the passing of our good health and it is also alright to be emotional and angry – in fact, letting out our emotions and possibly talking to others in the same situation can help us to move on and proactively tackle the life cards we have been dealt. Chronic illness is definitely about acceptance and it’s all about redefining what “getting better” means to you because sometimes it is about the acceptance of realizing that when you are better you may still be changed and different, but learning to live with this and love yourself regardless.

As you will know, the thyroid resembles the shape of a butterfly and, like a chrysalis chronic illness, forces us to go through a transformation. Make no mistake: There will be roadblocks along the way. There will be times when you stumble and fall and feel like you are never going to get up again, but you will and you will probably be wiser and stronger for it, as well as better able to deal with the next roadblock that comes along, even if at times those roadblocks start to look awfully familiar!

In my poem above, I doubt that any of us would agree with the second line – nobody is going to welcome chronic illness with open arms. We’d prefer to tell it to “piss off!”, but down the line some of us will look back and be happy that we have come this far. Many have commented that their diagnosis has improved their life by making them more aware of their health, making them more empathic towards others and allowing them to make a whole host of wonderful friends. Indeed, these points resonate with me, particularly the last one. We moved back to the US in December of 2011 and since that time we’ve been taking the opportunity to meet up with many of my online thyroid friends – it’s been a blast and has meant that we’ve felt a lot less alone than we would have otherwise. Pre thyroid diagnosis I knew little to nothing about health and medicine and now I feel much more in control of my own body, even if it doesn’t always cooperate!

Change is a very emotive word that can come about in a variety of ways. Many people argue that without change there would be no progress and yet others are afraid of the word and avoid it as much as possible. Some people however don’t have this choice and find that change is thrust upon them – through a change in lifestyle due to a necessary move; by splitting up with or losing a loved one; by losing a job and being forced to change careers; by falling ill and having to take time out to recuperate and ultimately re-evalute our life and what we want from it; by discovering an unexpected gift and feeling the need to develop this; by welcoming a new member to our family …

I personally have experienced all these situations and more and the one lesson I have learned time and again is this: it is not about the change itself; it is about one’s attitude to said change and how you deal with it. Positivity and optimism (even when it might seem difficult) can go a long way to turning even the most negative of changes into something positive, albeit at first glance these changes might make us feel as if we are doomed.

Moving, as scary and trepidating as it might seem, particularly if the move is not a voluntary one, can be seen as an opportunity to explore a new place and broaden our horizons. My husband and I lived in Germany for many years, a country where we rarely felt at home, but looking back I believe that the majority of expats (us included) would say that they don’t regret living abroad because it truly broadens your horizons and your intercultural skills.

I can remember splitting up with past partners as I recall the deep pain I experienced by severing that bond, but I personally believe that if a relationship is meant to be both parties will either mutually make the effort to work it out, e.g. through marital counseling, taking a time out and then resuming the relationship or, alternatively, if it is not meant to be, you will move on to a new and more harmonious beginning. When I broke up with one of my exes M, it was an extremely painful time, but looking back it was also liberating because I was forced to come to the painful realization that we were not right together and I was finally liberated to be myself rather than someone he thought he could mold me into. I was ultimately free to go ahead and live my life and eventually meet my husband Corey who truly accepts me for who I am.

When it comes to jobs, about 10 years ago I did an internship in PR and marketing and was unfairly bullied and consequently ended up prematurely quitting my position. I was in a panic as to what would come next and how on earth I was going to drum up enough money to pay my rent in a foreign country. But within just a short time, what seemed a curse had turned into a blessing. During my internship, I had realized that I was a talented translator and so after I left that company that is the career I ended up pursuing and was soon earning many times more than I had been at the poorly paid, exploitative internship and felt much more appreciated and fulfilled.

A few years after that, thyroid disease forced me to slow down and smell the daisies. Since I was a little girl, I’ve had a passion for writing, but in recent years have had trouble coming up with inspiration for things to write about. I realized a long time ago that I like helping others, but how to go about it? When I fell ill, I was given the answer. I was given the opportunity to turn a negative experience into a positive one by sharing my experiences with others in my situation and putting pen to paper was a cathartic and therapeutic experience that taught me about how I was feeling and also enabled me to mentally heal and get past certain blocks that had previously hindered my path.

These are just a few examples of how something that is initially perceived as a negative change can in fact be turned into a positive change and how we have the power in our own hands to do this! It requires us to believe in ourselves and realize that sometimes we have to expect the unexpected. As human beings, we are very skilled at adaptation and transformation – like Andersen’s ugly ducking (who was modeled on himself, by the way), we do have the power to become a shining swan; like Hank Morgan, Mark Twain’s Connecticut Yankee in King Arthur’s Court, we can adapt to the craziest of situations and as a chrysalis we can turn into a butterfly – a thyroid butterfly in all its gorgeous colors! ThyroidChange itself is a prime example of how a few people have the power to inspire others by taking a dream and making it happen. As weak as each of us may feel at times, together we are a powerful resource and support for each other. There is no need for us to accept the status quo because, as others before us have proven, we have the power to change it if we only try.

About the author: A long-time writer and blogger, Sarah was diagnosed with Hashimoto’s thyroiditis in August 2009. This inspired her to use her writing skills to help and encourage others in similar situations. She writes regularly for ThyroidChange.

This article was posted previously on ThyroidChange and re-posted with permission.

The match game of healthcare that works (Part III)

by Deb Andelt, JD

Published on November 15, 2011

1719 views

Care for yourself by assessing the “care” in your healthcare

There’s a lot of discussion both within the medical profession and among average everyday patients and family members about what constitutes “quality” healthcare and “care” in general. As with most things in life, the nature of the discussion reflects the frame of reference of those doing the discussing. The result: care is defined, and measured, differently depending on who is involved.

For providers, “care” is typically what they can easily measure

Hospitals generally tend to consider quality care, and its measurement, in three categories: 1) what didn’t happen, for example: decreasing re-admissions or reducing or eliminating adverse drug interactions and infections, and of course the ultimate “never event” ‒ no deaths; 2) patient improvements on any number of laboratory tests that may be relevant for what is desired to be measured; and 3) patient satisfaction survey scores which typically provide patients a list of “events” and ask patients to rate what occurred or didn’t occur, such as: did staff members introduce themselves and did they listen.

For practitioners, their measure of quality of care may be similar to what hospitals measure. It’s not uncommon to see practitioners list services, treatments or procedures as a means to communicate the type of “care” they provide. Non-allopathic physicians (NDs, TCMs, etc.) may related quality of care to improvements in the health and well-being of their patients based on how their medical sciences define health. (see The match game of healthcare that works ‒ Part II: Make healthcare truly about you – your personal definition of “health).

All of these things identified as aspects, qualities or attributes of “care” are quantifiable in numbers. Being in the shoes of the patient, or family member, the question to ask is: do those numbers add up to care that you care about?

For patients, “care” is how they feel

Patients seek healthcare to feel better.

“Patient care is emotional work.” *

From both the patient and physician perspective, emotion and care are intertwined. Yet how patients feel is rarely central to identifying, measuring, or achieving “care” that matters to the patient. Such an emotional framework may be considered elusive because emotions are deemed to be intangible. Yet with a manageable framework, we can do this. If the industry isn’t doing this in a way that is meaningful to patients, perhaps like the “we are the 99%; Occupy Wall Street” movement, it’s up to patients and their families to identify the emotional attributes and measure care that matters.

Create your personal assessment of “care”

As a starting point, do you know the healing feelings? When we experience the feelings of being:
• comfortable
• understood
• connected
• strengthened
• renewed

Those feeling set the stage for our mind/body systems to heal. These feelings will be your guide to know when your experience is one of “healthcaring.” If these healing feelings don’t resonate with you, find five other feelings that reflect how you want to feel at each step in a healthcare experience.

Whether you’re at a regular appointment with a physician, at a lab for tests, or contemplating procedures at a hospital, follow this simple three step assessment to determine if you’re experiencing “care” that supports you. At each stage in your interaction:

• Pause: At meaningful moments in the experience, pause and pay attention to what’s going on – what are you seeing, smelling, touching, hearing, or even tasting.
• Connect: Then connect with what you’re feeling, find the words for how you feel.
• Assess: Weigh how frequently you were feeling one of the healing feelings (or some other positive emotion) and how often you were feeling something not as positive.

Keep a small notebook handy to track this. Moments in the experience go by quickly. What you end up with may partially look like this:
• Walking in, I’m overwhelmed and anxious because the directions I had were bad, I got lost, and now I’m late.
• As I’m greeted, I feel a bit calmer, more comfortable; the man at the front desk was friendly and greeted me by name.
• While filling out paperwork I’m frustrated. As a returning patient, I’m thinking surely with technology there has to be a way to see my past information and simply update.
• Post paperwork, I’m a bit more relaxed, fairly comfortable. The waiting area has comfortable chairs, not to close together, no loud discussions.
• Being guided through the building or space, I have no idea where I’m going and don’t feel comfortable I can find my way back out or find a restroom.
• I feel grateful, strengthened even, when talking with my physician; she let me talk for a full 30 minutes and tell her everything; she asked relevant questions; as a result I feel understood.
• Leaving, I’m confused. I have a piece of paper with brief instructions of what to do next, but on reflection I don’t remember all of the conversation and these limited notes are insufficient to feel confident that I can manage my care.

Why how you feel matters to your well-being

We all know how important positive emotions are to our well-being and how disruptive negative emotions are to our healing. If our healthcare experience is filled with more aspects that trigger negative emotions, we’re actually going a bit backwards – or at least we may find ourselves feeling like we now have to catch up to our prior point of “being.” Supporting positive feelings throughout each aspect of the experience should be part of the “care” healthcare providers provide.

Along with your personal worldview of health, your definition of health, this process is a valuable component to determine what organizations and practitioners you will partner with for your well- being. If you don’t feel “good” about something or someone, that’s your cue to adjust and make a change. Remember, these feelings are influencing your overall health and well-being every moment of the day.

Note: This is part an ongoing series to equip you with a process, a path, to identify and experience healthcare that works for you.
— Foundation: The heart of healthcare that works: know your personal worldview of health: http://www.hormonesmatter.com/the-heart-of-healthcare-that-works-know-your-personal-worldview-of-health/
— The match game of healthcare that works series ‒ Part I: Understand the landscape set by insurance companies: http://www.hormonesmatter.com/the-match-game-of-health-care-that-works-part-1/
— The match game of healthcare that works series ‒ Part II: Make healthcare truly about you – your personal definition of “health”: http://www.hormonesmatter.com/the-match-game-of-healthcare-that-works-part-ii/

Deb is co-owner of Experience In Motion, which equips organizations with tools to curate meaningful experiences for customers and employees. Deb’s personal journey from decay to well-being inspired an emphasis in improving healthcare experiences for patients and practitioners by focusing on experiences that heal, and self-caring as a way of organizational being. www.experienceinmotion.net.

*http://depts.washington.edu/toolbox/emotion.html

Navigating Invisible Illness in the Age of Modern Medicine

by Chandler Marrs, PhD

Published on September 26, 2011

2253 views

Much has been about said about empowering and educating patients to be partners in the healthcare dance. From the e-patient and e-health revolutions through the piles of research showing more engaged patients have better outcomes, all seem to point a more active role and increased responsibility for the patient in his or her own care. But how does that work when the illness is not clearly defined, is not easily diagnosed or for which effective treatments are limited? What does it mean to be an empowered patient with an invisible illness?

This is the question that many women face on a regular basis. Indeed, for a number of predominantly female disorders, whether hormonally modulated or not, there are often many years before the symptoms are addressed as real and not figments of the female imagination. Chronic fatigue and fibromyalgia are two such examples, but so are endometriosis and an array of other perhaps more subtle hormone conditions.

During those years before modern medicine and the research community recognize the reality that define a particular disease process; during the years when women are prescribed psychiatric meds for non psychiatric conditions; during the years when pain medications with diverse side-effect profiles blur the line between the original disease and the one that is induced pharmacologically; during those years, how does one become the e-patient, the e-woman, without becoming a physician herself?

Really, we want to know.
Keep Reading

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

chronic illness - Page 3

Relating to Teens with Chronic Illness

From Chrysalis to Butterfly: My Thyroid Journey

The match game of healthcare that works (Part III)

Navigating Invisible Illness in the Age of Modern Medicine

chronic illness - Page 3

Related posts:

You might be interested in

Related posts:

You might be interested in

Related posts:

You might be interested in

Related posts:

You might be interested in