Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Victim or Survivor?

Working with the public I get to see a lot of colorful characters on a daily basis.  I met two women  yesterday that are facing serious illness, but doing so with a conviction that will aid their health and healing.  I watched one of the women, young, who due to prednisone has gained over a 100 pounds in six months and is no experiencing bone fractures.  Her spirits were high even being in pain, and her family was ultra-supportive of her needs.  Both of  these women had a great sense of humor at a time in their lives when many would be sitting in the dark at home.  That’s when the famous proverb flashed into my head, “It’s better to light a candle than curse the darkness.”

I find that thought extremely powerful.  It implies we all have a choice about how we handle each and every situation in our lives.  If you curse the darkness following your diagnosis of a chronic or other life-altering illness your world view is of being defeated.  What I’ve come to understand about those who choose to curse the darkness is the fear of seeing themselves (and I don’t mean physically necessarily) in the light.  The “light” accentuates our traits, gifts, and thoughts.  It brings our true selves to the forefront of our consciousness.

When facing a health challenge cursing the darkness leads to expressions like, “Whoa is me” and “Why did this happen to me?”  Those thoughts may be prevalent at the beginning while your still in shock about your diagnosis, but I can tell you as someone who has had an auto-immune disease for over thirty years, those thought patterns are the surest way to bring you down.  They are the road to unhappiness and defeat.  They challenge you on the physical, emotional, and spiritual levels depleting your energy and robbing you of an opportunity to get better (remember there’s a difference between getting better and getting well).

I hope you’ll choose to light a candle and illuminate your path to health and healing.  I hope you’ll shed some light on your challenge so you can acknowledge like the two women I met yesterday how to still live life in the face of adversity.  I hope you’ll light a candle so you can give your body, mind, and spirit every advantage in overcoming your health challenge.  If you’re still cursing the darkness and reading this post, allow me to hold the candle for you until you’re ready to light it for yourself!!

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Posted in Caregiving

C-A-R-E-G-I-V-E-R Part 9

Welcome to Caregiver Friday!!

It’s hard to believe that this series is coming to a  close.  Writing the 8 previous entries has allowed me to reflect on all the caregiving stories I’ve heard over the past twenty years.  It has also allowed me to take note of the aspects of caregiving that seldom get talked about, the magnanimous gestures by caregivers for those needing your love, support, and assistance.  It is often a thankless job.  One of the greatest things I ever witnessed was a  doctor thanking the caregiver for being so present to the situation and showing commitment, perseverance, and love throughout the patient’s journey to health and healing. 

I felt it was only right to close this 9 part series with an aspect of caregiving that is often overlooked and yet I believe makes you, the caregiver, an invaluable component of the patient’s care.  It is also the reason your relationship with the patient and the care team is so crucial.  What’s the final aspect of the series?

R is for Realistic

I can’t think of any greater gift you can give the person you’re caring for than the gift of reality.  It’s so easy for many people after being diagnosed with a chronic or other life-altering illness to be all “pie-in-the-sky”.  You, the caregiver, are often more firmly planted in the reality of the day.  You’re in tune with the patient’s needs, the concerns of the patient and the care team, and you try to find a happy balance between all concerned parties.  I want to make one thing very clear; I don’t believe that being realistic means you’re pessimistic in any way.  Sometimes being realistic prevents the patient from undue stress and strain, not to mention endless let downs from misguided expectations.

If anything, as the person who holds the “reality” card you’re in a great position to be optimistic because you’ve developed the capacity to take a step back and look at the bigger picture.  It’s interesting about the optimist/pessimist debate because often I’ve found that the patient wants to stop treatment, but the caregiver believes so strongly in what’s possible that the deep dialogue takes place about love, commitment, and end-of-life care.

I hope you’ve been able and willing to take in all aspects I’ve discussed in this 9 part series.  It has been an amazing journey to be able to honor your presence as a caregiver.  I know I’ve done it before, but once again I’d like to say, THANK YOU for your tireless efforts to ease the transitions of the patient from someone who has been well to someone who is health challenged.  I want you to know that there are resources for support that I hope you’ll take advantage of in your community.  You can further your own journey by going to www.survivingstrong.com and signing up for the “Courageous Caregiver” e-course.  It’s a series delivered over the course of three weeks and allows you to explore caregiving even deeper with follow-up questions along the way.

It’s been an honor and privilege to accompany you on this journey.  I look forward to spending more time with you in the future!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

How Long Till It Sinks In

Receiving the diagnosis of a chronic or life-threatening illness is unnerving.  It throws you off-center and for many it takes a bit of time for the diagnosis to “sink in”.  There’s a difference between it sinking in and coming to terms with, or accepting the diagnosis.  The diagnosis “sinking in” means that it becomes a part of the reality.

The question you may be asking is, “Exactly how long does it take to “sink in?”  That’s a tricky question because everyone is different.  There are many factors that contribute to it “sinking in”.  Do you know anyone who has faced a health challenge and how did they handle it?  In your meetings with the doctor what’s the prognosis?  Where are you on the illness continuum, ranging from reasonably healthy to terminally ill?  The answer to each of these questions will impact how quickly your diagnosis “sinks in”.

So here’s the next question.  Once it sinks in, what are you going to do?  How will you take this information, this new from the doctor and what are your next steps?  How have you handled challenges in your life prior to your illness; that may be a good indication of how you’ll handle this current challenge.

There are many things that may have to “sink in” following the diagnosis.  First is the realization that life the moment before the doctor ushered those magic words is somewhat different from following the infamous news.  Your assumptions about what it means to be healthy in this world will shift.  You’ll become more conscious of your own health and the health of others.  You’ll feel bombarded by messages about illness from the news, television programs, commercials, and a host of other arenas.

What if it never sinks in?  That is always a possibility.  Those who have not had that point of coming to terms with their diagnosis will often struggle through treatment, be resistant to outside support, and be more pessimistic.  It’s not like you can develop an alter physical being and put the sick one in the closet till they invent a cure.  It’s about integration.

My wish for you is that your diagnosis “sinks in” in the perfect time for you integrate the information and make informed decisions.  My wish for you is that you allow the diagnosis to “sink in” so that you can pull all your internal resources together to fortify your health and healing energy.  My wish for you is the highest quality of life possible given your abilities and possibilities.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Identity Theft

You get a diagnosis and instantly you feel like you’ve been the victim of identity theft.  You’re no longer an individual, but a constituent of the disease.  Your ever evolving personal profile is compromised as if a hacker entered your personal system and is not at the controls.  It’s disconcerting, but it happens every day and when it does how do you deal with the theft? 

Many go into hiding following their diagnosis.  It’s as if you’ve suddenly been put on the FBI’s 10 most wanted list and everywhere you go you believe all eyes are upon you.  In addition, your family and friends believe you’re not the spokesperson for the illness giving you this new level of responsibility. 

How did all of this happen?  All you did was go to the doctor, take a few tests, and receive news about the diagnosis from the doctor; how did it turn into a deconstruction and reconstruction of a life?  Unfortunately our culture is all about labels.  Everyone feels more comfortable when they can pigeon hole you so that it eases their own anxiety.  The difficult part when facing a health challenge, unlike with your credit, is that you can’t lock out a diagnosis.  You can certainly take measures to ward off the possibility of illness, but there is no definitive method for extricating illness from the human body…yet!

What is your identity?  Are you the same person you were the moment before the diagnosis as the moment after the diagnosis?  Is your faith the same?  Is your humor the same?  Is your taste in literature the same?  This is the time when affirming your identity is important because it reinforces within you and to the world that the health challenge isn’t what defines you.  It doesn’t have you, it is a part of you that you have a voice in handling.

Don’t give your diagnosis power over your life.  Fortify your life by reinforcing what you most love about your life.  Dig deeper roots in your passions, your relationships, and human connection.  Take a stand on issues that are important to you because your voice matters…it is part of your identity.  Don’t give the thief free reign over your life; your lord of the manner.  It’s time to show the identity thief who’s boss!