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Posted on 27. October 2011

Five Tips for Living Well with Chronic Illness

by Elvira G. Aletta, PhD

I've had my share of chronic illness. In my early 20s, I was diagnosed with nephrotic syndrome, a rare kidney disease that usually affects young boys. Weird. Then in my 30s, 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's 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.

It's not depression if you are adjusting to a major loss. That's grief, which 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 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 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 support, while others you thought you could count on cave. If someone inside the circle asks, "How are you?" tell them the truth. When someone outside the circle asks, 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 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, I relapsed, and 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 30s, 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.

Reposted with permission from www.ExploreWhatsNext.com


Comments (6) -

2:05 PM on Friday, October 28, 2011

I absolutely loved this piece.
It is my personal belief in addition, that our attitude
plays a big part in how we manage our chronic
illneses.  It seems to me, that healthcare providers
periodically like to add another diagnosis to my list. No
fun, that is what the card deck of life deals. Smile and go on,
loving life is the best there is.

Betty M Gordon
9:36 AM on Saturday, October 29, 2011

I also loved this piece. The social aspect spoke to me
- I hate that many people family and others, put me in the sick niche and do not include me in things I was formerly part of-

I also have chrnoic back pain and adjustments would have to be made to include me- too much trouble I guess.
So in termsof dreams I have found other ways to get to places when I cannot drive and accept it as Ok for me.
Thank you for  this

8:23 PM on Friday, July 04, 2014

Wow, these really helped me...especially number 3 above. I have peripheral neuropathy from rheumatoid arthritis and will be starting IVIG soon.

8:24 PM on Friday, July 04, 2014

Wow,this into really helped me...especially number 3. I will start IVIG soon for worsening peripheral neuropathy from rheumatoid arthritis.

11:11 AM on Wednesday, August 26, 2015

Five Steps For Living Well With Chronic Illness,  I could not have put it into better words myself. Since January we have gone thru some peaks and valleys, quality of life has been an adjustment for me and my independent spirit.  My husband is  a great nursemate and advocate for me. CVID diagnosis explained a lot of medical history for me, however, this is my third major setback from subq side effects, my body is beatdown and rebeling. We are stepping back and regrouping and praying for guidance on where to go from here.

monica parrish
9:20 AM on Sunday, February 06, 2022

I am taking ivig at cci after lymphoma. I have been diagnosed with hypogammaglobulinemia. I need help finding a doctor that treats it. I live in Huntsville al.

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