5 rules for living well with a chronic illness

Dr. Elvira Aletta is a clinical psychologist with a unique perspective on what it’s like to live with a chronic illness. In her early twenties, she was diagnosed with nephrotic syndrome, a rare kidney disease that usually affects young boys. Then in her thirties, she came down with a chronic autoimmune condition called scleroderma.

She’d never heard of that, either. She describes her experience like this: “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.”

These sentiments might also seem familiar to those of us living with cardiovascular disease. And that can feel downright depressing. Dr. Aletta helps to explain this in her blog, Explore What’s Next:

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.

But at some point, grief can morph into depression and that can make your physical illness worse.

She also suggests that one or a combination of the following factors can affect the emotional and psychological well being of those diagnosed with a chronic illness, and contribute to depression.

  • 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 okay especially hard if there’s no diagnosis.

Dr. Aletta shares these five rules for living well in spite of a chronic illness like cardiovascular disease:

1. Be confident you have the right doctor. When you have a chronic illness, 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 own chronic illness 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. 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. 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!

“A patient of mine found her mother would get hysterical at any medical news, so it was better to keep her at arm’s length. But my patient’s mother could do laundry for her, and that made both of them happy.”

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. Your self-esteem lies in the standards with which you measure yourself as you 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 work week, for instance, you may feel lousy about yourself because now you can’t manage it. But 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? In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.”

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.

5. Have dreams and strive for them. You had ambitions to get a degree or a promotion, to see the world or save it, to get married or have kids. Now you’re thinking, do I have to give all 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. 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.”

Carolyn Thomas is a heart attack survivor who blogs at Heart Sisters.

 

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  • Andrew Callan

    This advice is spot on, great post. 1 thing I’d add is how much of a challenge the variability of chronic illness can be. Human beings are incredibly capable of adapting to change & overcoming adversity when it is CONSISTENT but when your symptoms very significantly it’s harder to accept and “get used to it” and the accompanying frustration can fuel your depression. Avoiding feelings of hopelessness & helplessness is essential so having dreams and focusing on the things you can control are huge helps. Much easier said than done though so that’s another thing at you really need your inner circle to support you with

    • http://www.myheartsisters.org Carolyn Thomas

      I agree, Andrew. So much of living with a chronic disease is adapting to the “new normal” – which can change every day!

      • http://none KIM

        Thank you for a wonderful article..I have been so down lately and living “a new normal” is what it I need to learn to do…I have Neurosarcoidosis and there are days when I want to give in to it…but it won’t win. Thank you again for all the positive words and thoughts that give me strength.
        Kim

        • http://www.myheartsisters.org Carolyn Thomas

          Thanks for your comment here, Kim. Neurosarcoidosis is a multi-system diagnosis that can be severely debilitating both physically and emotionally. Good luck to you!

  • http://www.annieappleseedproject.org Ann Fonfa

    Very useful thoughts – I think too much is made of ‘depression’ when people are first diagnosed with a serious health challenge. As you say, it is so reasonable to be anxious, worried or depressed. Most of us find ways to live the new ‘normal’.

    I founded a nonprofit website for people with cancer for use of natural approaches FIRST (www.annieappleseedproject.org. Too many pills make us ill in other ways.

    • http://www.myheartsisters.org Carolyn Thomas

      Ann, my experience with heart attack survivors has been that, in fact, NOT ENOUGH has been made of depression following our diagnoses. As one of my readers commented after her own cardiac event:

      “I try to pretend this hasn’t happened. My attempts to restore equilibrium lead me to think some moments or even hours that I do not have this disease. I pretend. My family pretends. Then I seem to have to start all over with my family, my friends, my life, again experiencing the shock, the uncertainty, the disruption, the striving and the acceptance.”

      Far more helpful would be for health care professionals to openly discuss before hospital discharge that it’s indeed common for survivors to experience mental health issues, that these will not last forever, and most importantly that help IS available (from talk therapy with professionals like Dr. Aletta to exercise, meditation, support groups, or meds).

  • http://explorewhatsnext.com/ dr aletta

    Just a few thoughts I had after reading Andrew’s comment and what you wrote, Carolyn. There may be a difference in how we respond to a diagnosis if the onset of the illness is sudden as opposed to insidiously appearing over months, if not years. It is common to hear from people who have lived with painful symptoms without a diagnosis to actually feel celebratory when they are finally given one. It would be understandable if that were not the reaction of someone who suddenly, ‘out of the blue’, discovers they have serious heart disease or cancer.

    Also, Andrew has a point about the difficulty in dealing with what I call the moving target of symptoms that come and go. When I have a patient who has symptomotology like this, I recommend we accept the *consistency of the inconsistency* to give us a foot hold. I liken it to the difference between climate and weather. If we know the climate causes variable weather we can use that knowledge to adapt.