With all due respect to Elizabeth Gilbert
About three years ago my life changed dramatically. My husband called to tell
me he was leaving his job at the university. I was three hundred miles away,
standing outside a crematorium in Queens. My cousin's husband died
suddenly and I made the trip to be with her.
decision meant financial uncertainty. I understood why he had to do it
and was totally in agreement, but I
was scared. What we had talked about for months had become a reality.
After putting away my cell phone, I cried and cried. I cried for my cousin, for her loss, and for John and me. It was a confusing mess. Sadly or
fortunately, crying was expected at a funeral so no one took much
notice. After the ceremony, my cousin invited close friends and family
to a lovely Italian restaurant for dinner. We proceeded to comfort
ourselves with the world's most comforting food.
Thus began several years of eating my way through the stress of
building two new businesses, one with my husband and another by myself. As
long as porcini mushroom ravioli calmed my nerves, I didn't need Valium.
During this time trips to the
barn to see Annie
became more and more
infrequent. Not taking the time to indulge in my favorite exercise,
riding, meant I wasn't burning near as many calories. During the winter
I hardly saw Annie at all. The less I rode, the more I ate, the bigger
Efforts to gain control over my need to feed came and went and are well
documented on this blog.
I knew diets weren't the answer but I struggled with what was. So I did the
logical thing. I gave up and just let my stress have its way with me.
It wasn't all bad. My hard work did pay off. But as the businesses
did my waist line. Thank God for elastic.
Two months ago, after a long day at work, I dragged myself up the stairs to
change. At four in the afternoon I was tired. I felt weighed down, like someone had stuffed a
bunch of rocks in my underwear. I reached the top of the stairs and
thought, this cannot be healthy.
To prepare for writing this book, “How To Have A Chronic Illness So It Doesn’t Have You!” I wanted to find a way to describe the person with chronic illness without having to say ‘person with chronic illness’ all the time.
Fishing around in my mind I came up with some petty lame efforts. It was hard to conjure up anything that didn’t smack of victim-ness, the opposite of what this book is about. Then ‘the Chronic Illness Wrangler’ popped up. Hmmmm…
I’m a cowgirl from Kansas who grew up with horses, so the idea of a wrangler has happy connotations for me. Nellie, (our little quarter horse mix mare when I was a kid), was full of energy and fun to ride. Or she was unless she got spooked and bolted. Kind of like the way my disease took over my body. Therefore… the Chronic Illness Wrangler: the illness is the horse that needs to be lassoed and trained to behave. The wrangler does the training. Get it?
When I was first diagnosed with scleroderma and for a couple of years after that, my doctors described the illness as ‘galloping.’ They said it was a nice way of saying the disease was running away with me and no one could tell me where it was headed. Did they say nice?
Then again, maybe it helped that I actually knew what it was like to be on a run away horse. The panic, both mine and Nellie’s, the noise, the wind, the desperate prayers to stay on, or if I fell off, the plea that I’d land on something that didn’t kill me. Galloping? Hell. Try riding a rocket!
Did it help that I knew that to stop a run away horse you needed to keep your head and think, know that the run couldn’t last forever and that what the frantic horse needed was guidance? As long as I could keep my head, I didn’t yank back on the reins, causing her more panic. As long as I could think, I kept my center of balance with my mare’s and stayed on. As long as I could think, I chose not to think of every possible woodchuck hole she could fall into.
Best of all, as long as I could think I could remember that to stop a run away horse you reached down on the rein and turned her head firmly to one side. Whoa!
Without knowing it my doctors gave me a metaphor I could live with.
My twice monthly appointment during that time didn’t amount to much more than the nurses and physicians tut-tutting about how the disease had progressed. Pain management was reduced to a game of ‘What non-steroidal shall we try this week?” I would go home despondent, feeling empty and powerless.
Until I remembered the run away horse.
All at once I was the cowgirl wrangler ready to outrace any stupid galloping illness. It wasn’t much but it was what I had. No matter how long it took, I was ready to ride this baby out. Just keep a cool head and stay on. As long as I could think, I could reach down, turn this crazy mount’s head and gain control again. Whoa!
Photo courtesy Kristian M via Flickr
During a time when my self-esteem was lower than dirt, my therapist suggested I start a list of things I liked about myself. It sounded so cheesy, like advice I’d find in an Oprah magazine (no offense, Oprah). But he persisted. Write a list of things I liked about myself, put the list on my bedside table and look at it first thing every morning.
The list was very short to start. I liked my hair. That was it. He gave me a few suggestions. Really, he thought I was smart? Yes, he said, put it on the list. So my list grew a bit.
It was a sign of how badly I was feeling that I couldn’t come up with much more than platitudes. I was kind. I was honest. Big deal. The breakthrough came when Dr. Greenbaum asked, “What would your friends say about you?” Oh, that was easy! And my list grew some more.
Therese J. Borchard, takes the self-esteem list a step further. On her post on PsychCentral she suggests starting a Self-Esteem File by shouting out to friends, family, mentors, co-workers, for their input. Instead of imagining what friends would say about you, you actually ask them to write what they think of you in their own words. Very powerful stuff.
This technique of having a written witness of your positive attributes really does work! Before long, instead of dreading the morning, I looked forward to waking up to read my list. It sustained me through the day until I was able to do it on my own. Slowly the attributes weren’t what others thought of me, I believed it myself, as if I had swallowed the list, digested it and it became a part of me.
So get over the cheesy factor and give it a try. Your self-esteem will grow bit by bit, day by day.
Yes, I’ve had my share of chronic illness. In my early twenties I was diagnosed with nephrotic syndrome, a rare kidney disease that usually affects young boys.
Then in my thirties I came down with scleroderma. Never heard of that either. When we are young it is our God given right to take our health for granted. Chronic illness means getting sick and being told it is not going away, and that stinks. Our bodies have suddenly freaked out on us and we’ve lost control of the one thing we thought we could count on.
Here’s the thing about depression and chronic illness. It’s not depression if you are adjusting to a major loss. That’s called grief. Grief needs time to process. Allow yourself that time to mourn, to be angry and sad about what you’ve lost. You need time to accept the new reality.
Then at some point, we need to take action. If we don’t, grief morphs into depression and that can make your physical illness worse.
Be aware that one or a combination of factors can cause lowered mood when you have a chronic illness:
➢ The situation. Loss. Grief.
➢ Changes in appearance, mobility, independence.
➢ The illness itself may have depression as a symptom.
➢ Pain and fatigue.
➢ Side effects of medication and other treatments.
➢ Social pressure to appear OK, especially hard if there’s no diagnosis.
My five good rules to deal with it all? OK, here we go…
1. Be confident you have the right doctor.
When you have C.I. your relationship with your doctor is second only to your spouse or your parents. Being honest (and you must be honest!) with that person means you need to be able to trust them to hear you. If you don’t have that kind of relationship get a second opinion. Shop around. In my C.I. career, I fired three highly recommended specialists because they were jerks. Thankfully, I’ve also had wonderful physicians who literally saved my life and my mind.
2. Define your circle of support carefully.
Isolation leads to depression and it is so easy to isolate when you feel lower then dirt. People may surprise you. Peripheral friends may step up and be terrific supports while others you thought you could count on can’t be there for you. If someone inside the circle asks, “How are you?” Tell them the truth. When someone outside the circle asks you the same question, lie. Say, “I’m fine” and change the subject. Too often they can’t handle the truth and they suck any energy you have taking care of them! A patient of mine found her mother would get hysterical at any medical news, so it was better to keep her at arms length.
If someone asks if they can help, say yes. Accepting help is a gift to them. Trust that someday you will be on the giving end. My patient’s mother, the one who couldn’t handle the medical reports, could do laundry for her, and that made both of them happy.
One big way someone can help is to go to doctor’s visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good!
3. Protect your health as you would a small child.
You are more than your illness. That part of you that functions well needs you to advocate for it. Of course, there are the basics of getting plenty of sleep, exercise and eating smart. In addition to all that, I suggest learning a new set of signals that are your clues for when you’re wearing your health thin.
For me it’s lowered ability to concentrate, tension in my neck and shoulders, irritability and loss of my usually dependable sense of humor. When those yellow lights are blinking, it’s time for me to stop, assess and make changes. When I ignored those signals in the past I relapsed. Looking back I can see where I ran the red lights. So be a fierce protector of your health. Set limits and find the courage to say ‘No’!
4. Create a new measuring stick.
Our self-esteem lies in the standards with which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and rethink your standards. If you are used to defining yourself by your 50-hour workweek, for instance, you may feel lousy about yourself because now you can’t manage it.
Finding a new standard can be tough. One technique I use with patients is to have them ask themselves what is reasonable? Is it reasonable to do it all yourself or is it more reasonable to delegate? Is it reasonable to register the kids in travel hockey or is it more reasonable to stay local? This is where a lot of courage is needed. Courage to address old pressures to be a certain way and to imagine value in doing things differently. In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.
5. Have dreams and strive for them!
You had ambitions to get a degree or promotion, to see the world or save it, to get married and have kids. Now you’re thinking, do I have to give that up? No, you don’t. It’s imperative for your spirit that you have goals for living, big and small.
What might change with the reality of chronic illness is the path and timing. I wanted to have kids and was told for years, ‘No.’ I had to adjust to the idea of life without kids or adopting. Then in my late thirties, my doctor said, go for it. After a scary, thrilling journey, today I have two thriving teenagers.
As we reach for the stars let’s appreciate the ground we stand on. Mindfulness has a real place in keeping depression at bay for everyone. Sometimes our dreams are right before our eyes.
- University Commons
- 1416 Sweet Home, Suite 8
- Amherst, New York 14228
- Tel 716.308.6683 Fax 866.610.2261
The University Commons office park is located in central Amherst, New York, with easy accessibility from North, South, East and West. Please read carefully.
From points East or West take Maple Road to the Sweet Home intersection. Go North on Sweet Home Road (turn Right if you’re heading West on Maple; Left if you’re heading East). Once on Sweet Home drive about 1/4 mile to the first traffic light. You’ll see the University Commons office park on the left; on the right is an entrance to the University at Buffalo. Turn Left onto Rensch Road. Turn into the second drive on the right. Our building, 1416 is on the left, the building facing East (Sweet Home); Suite 8 is in the middle of the building.
Take the 990 North and get off at Exit 1, the first exit, University, North Campus. The exit loops around onto Audubon. The first traffic light is Rensch Road. Turn right. The next light is Sweet Home Road. Stay on Rensch Road. Turn into the second drive on the right. My building, #1416 is on the left, the building facing East (Sweet Home); Suite 8 is in the middle of the building.
If you’re coming from Buffalo or points South, Take the 33 (Kensington) to the 90 East to the 290 West. Take the 990 North. Get off at the Exit 1 (the first exit), University, North Campus. The exit loops around onto Audubon. The first traffic light is Rensch Road. Turn right. The next light is Sweet Home Road. Stay on Rensch Road. Turn into the second drive on the right. Our building, 1416 is on the left, the building facing East (Sweet Home); Suite 8 is in the middle of the building.
From the North take North French Road or the 990 to Sweet Home. Go South on Sweet Home about a mile to Rensch Road. Turn Right onto Rensch to the second drive on the right. Our building, 1416 is on the left, the building facing East (Sweet Home); Suite 8 is in the middle of the building.
Do not use MapQuest or GoogleMaps to get directions. As much as we usually love these services, they both place the office building in the middle of the road, which is less than helpful. Apparently this is a common occurrence with new builds and it will take some time to straighten it out.
Email us at email@example.com if you need more directions.
- Do you find yourself at a crossroads?
- Do the old definitions of who you are not work anymore?
- Not enjoying the place you’ve wound up in your work or relationships?
We’ve been there. We know how awful it feels when life events and responsibilities overwhelm our dreams. Explore What’s Next is customized to your individual needs to provide relief from emotional pain with effective, practical and long lasting results. Explore What’s Next offers individual counseling and psychotherapy for adolescents and adults of all ages, relationship counseling, life coaching and consultation. Contact us today!
Dr. Aletta is a licensed clinical psychologist with over 25 years of experience helping individuals and couples reach their full potential.
Dr. Aletta enjoys her work so much it’s almost ridiculous! The unique problems that each individual or couple brings in are challenges that are met together. With her personal experience and professional expertise, plus your knowledge of yourself and motivation, you can address the stresses that threaten to engulf you.
Dr. Aletta created Explore What’s Next to be effective for you. We provide professional service with compassion, direct engagement, and non-judgmental support in a comfortable, private space, in the office or with Skype.
Dylan Broggio, Licensed Clinical Social Worker
Dylan specializes in counseling teens and their families. She also enjoys working with adult individuals who are struggling with anxiety, depression or are overwhelmed by life’s stresses. Dylan is smart, enthusiastic and professional. Her clients appreciate her great sense of humor, genuine understanding and empathy.
Dylan truly lives up to the requisites of an Explore What’s Next therapist: Qualified, kind and easy to talk to.
With Dylan coming on board, EWN is able to offer expanded hours, including Saturdays. This will be especially helpful for students during the school year or individuals and families in need of greater scheduling flexibility.
Our style is highly interactive.
We stand by your side problem solving.
Our work together is collaborative.
We provide the guidance, you provide the motivation!
You are the ultimate agent of change in your life!
Do you have a question you’d like to ask us? Would you like to set up a free consultation in the office, using Skype or
on the phone? When you call us you will reach us directly. If you get our voice mail we will return your call as soon as we are able. There are no message services, receptionists or office staff to go through.
Call Dr. Aletta at 716.308.6683
Call Dylan at 734.474.6987
You can also email us at firstname.lastname@example.org
We can discuss your needs, answer any questions
you have and make a plan.
You have nothing to lose and a lot to gain by taking this little step.
We are happy to provide Skype and phone services for long distance or home-bound clients.
Our offices are at University Commons, 1416 Sweet Home Road, Suite 8, Amherst, New York 14228 Click here for directions.
To learn more about us and to visit the Explore What’s Next Website click here.
By Dr. Aletta
The number of people who don't take their hard-earned vacation time is appalling. A survey of American workers reports that more than half don't use their vacation or personal leave time. More than half! Why do people do that to themselves?
Sadly I can think of several reasons why people don't take vacation:
- Fear of losing their job if they don't appear to be 100% committed. This could be imagined or real depending on the employer's attitude.
- Our OCD society still sees time off as slacking. Same goes for sleep.
- If you are self-employed you have no paid vacation time and time is literally money.
- An inflated sense of our importance at work. Everything will fall apart if we are not there!
- We have no idea what we would do with ourselves in the absence of work.
I can think of only one reason to take a vacation: Taking a vacation is the healthy thing to do! It's healthy for your mind, body and relationships. Vacation provides a needed balance. It's like hitting the reset button. Taking a vacation, vacating your mind of work, will improve your on-the-job performance! Otherwise, you risk serious burnout.
I'm a bit guilty of losing track of my time off. I love my job, so I can easily go on and on until a few tell-tale signs it's time to take a break begin to pop up.
- Irritability. When I went to get a hair cut yesterday, and discovered the appointment was for another day, I could feel the steam coming out of my ears. Something that usually would roll off my back became a huge inconvenience as if they had rescheduled open heart surgery, for crying out loud!
- Memory loss. I find myself forgetting stuff. When my kids begin to say, more than once, "Mom, I told you about that already," I begin to think there's a clone of myself, like in that movie, Multiplicity, running around engaged with my family while I zone out. Not good.
- Apathy. The weeds are taking over the flower beds. Dishes pile up. Patient charts are open and lacking notes from a week ago. My dog needs walking and my legs need shaving. When I really don't care once in a while, that's OK. When days and weeks go by and life's little maintenance chores go ignored? Someone needs a vacation.
- Fatigue. It doesn't matter how much sleep or exercise I get. I'm pooped and want to nap, a lot!
- Anhedonia. I love that word. It's a fancy way of saying that the old stuff that used to make me happy, doesn't make me as happy anymore. Anhedonia is a major sign that something is off in our lives and can lead to burnout and depression if we don't pay attention to it.
My work usually makes me happy. Before it doesn't bring me contentment anymore, I bit the bullet and scheduled some time off. Chronically not taking your vacation from work is a kind of insanity. Now that I have time off to look forward to, I feel relieved and wonder, why did I resist in the first place?
I read somewhere that properly diagnosing chronic illness can take from two to
three years. Many of you wait even longer.
In the meantime, while the doctors scratch their heads, we’re expected
to be happy we’re alive. And that’s if they don’t write us off with
It took a year and three doctors before I was diagnosed with
scleroderma. Just remembering what I went through during that year-from-hell gets my blood boiling and I was one of the lucky ones.
If you are experiencing symptoms but don’t have a diagnosis yet, here are some tips that I hope will help you get through this trying time a little easier.
Trust yourself. You are not crazy. Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to
do for their patients. ALL of them eventually received a medical
diagnosis. That’s right. ALL OF THEM.
Maybe I see a skewed
sample of the general population but I don’t think so. Medicine is
slowly catching up to the experience of hundreds of thousands of people
reporting symptoms for which there is no hard, “objective” test. They
should be believed. Even the Veterans’ Administration has come to
recognize that when a combat veteran says he is suffering from PTSD, he is not faking. We do not want to be sick and it just pours salt in the wound when anyone suggests we are making this stuff up.
Join the discussion at Ask the Expert: Coping with Chronic Illness
CafeMom invited me to be their expert for Ask the Expert week the week of July 19th. The topic is rearing kids when you have a chronic illness. I am still catching my breath over this honor. CafeMom is a huge deal. Rebecca Phillips, the editor who contacted me said:
In case you're not familiar with the site, CafeMom is the leading website for mothers, reaching 6 million unique moms each month. Moms post more than 300,000 pieces of conversation in our groups each day. We have thousands of mothers on the site seeking tips and support, and it would be great to introduce these moms to your work. You can also find out more about CafeMom from this segment on Good Morning America last week. (See the video below.)
It took me a moment resist the urge to hyperventilate. After getting my head out from between my knees, I accepted the fact that, yes, I AM AN EXPERT! and the excitement took over.