When chronic illness strikes: Tips on talking to family and close friends

In the summer of 2001, I was preparing to begin my 19th year on the faculty of U.C. Davis School of Law. Then I got sick with what the doctors thought was an acute viral infection. I have yet to recover.

Being diagnosed with a chronic illness or condition can take a toll on your relationships, partly because all of the affected parties are confused and scrambling to adjust to this drastic and unexpected change in your daily life. It’s a crisis—for you and for those who are close to you.

Here are four tips to help you communicate more skillfully with loved ones when chronic illness becomes an inescapable part of your life.

  1. Get help from a neutral third party. Often the best way to educate family and close friends about your diagnosis is to use a third party source because it takes the emotional component out of the equation. There are online organizations and associations devoted to every chronic illness or condition. Once you find them, you can forward links or print out pages for loved ones to read. If you have a book about your illness, photocopy the chapters that cover what you’d like your loved ones to know about your new life. (I did this for my close friends, attaching a short explanatory note to two chapters that I copied.)
  2. Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness, write a letter to them. Describe what your day is like now, and express how you feel about this unexpected change in your life. A friend of mine wrote a letter like this to her mother when, despite their many conversations about her illness, her mother persisted in saying things like, “If you’d just get up off the couch and go out and exercise, you’ll be fine.” The letter transformed their relationship. Now her mother is one of her main sources of support.
  3. Find non-illness related subjects to talk about. I had to learn how talk to others as a person with a chronic illness. At first, I assumed my family and close friends would want to know everything about my illness. After each doctor’s visit, I’d send them a long email describing the appointment in detail, medical jargon included. I’d get back a supportive sentence or two. It took several years for me to realize that my relationship with them would be more enjoyable and richer if I didn’t always talk about my illness. Now I ask about their lives and talk about new interests that I’ve developed. It provides all of us with a much needed respite from thinking about my illness all the time.
  4. In the end…accept their limitations. Some family and close friends may never accept this change in your life. Try to recognize that this inability to accept you as you are now is about them, not you. Your medical condition may trigger their own fears about illness and mortality. You can’t always fix how others think of you or treat you, but you can protect yourself from allowing their lack of understanding to exacerbate your symptoms. The best way to protect yourself is to cultivate compassion for them. If you can learn to wish them well despite their inability to support you, you can free yourself from the mental suffering that arises from your desire for them to be different than they are. The physical suffering that accompanies chronic illness is difficult enough without adding mental suffering to it.

Everyone (including yourself) needs time to let this life-changing circumstance sink in. Hopefully, these four tips will make the road to acceptance less stressful.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • http://ldnformultiplesclerosis.blogspot.com/ Cathey Thomas

    I’d like to offer another option to add to the list; consider NOT telling family or close friends about your newly diagnosed chronic illness at all. Or at least, not unless and until there’s a reason to.

    I often wish I’d never told anyone about being diagnosed with MS (in 2003 at the age of 53). Eight years after diagnosis and I’m still not very significantly affected by the disease, but the knowledge of it has affected the way some people see me and talk about me…not to mention all the “helpful” magazine articles and newspaper clippings they forward. Bless their hearts, they only want to help but I don’t need any help; I think my MS bothers my loved ones more than it bothers me. Obviously that will probably change in time, but for now I find it annoying having to explain to non-medical people why I’m happy with the treatment I’m on and not looking for anything new, not even in the “miracle cure” they’ve just excitedly brought to my attention.

    You can always tell people later, if and when conditions warrant it, but once that bell is rung, you can’t un-ring it.

  • http://myheartsisters.org/2010/10/09/new-country/ Carolyn Thomas

    Thank you Tony for your four very wise tips, and also for introducing us to your website, which I’d never visited before today. Your own experience with CFS – as you point out – will feel remarkably familiar to all living with chronic illness “such as arthritis, heart disease, and diabetes (three among dozens) “. Different Dx, but same effect on ourselves and those who love us.

    In fact, your summary of just some of the debilitating issues that chronically ill people face when they’re not in their doctors’ offices should be required reading for all physicians and deserves to be repeated here:
    - “suffering due to the relentlessness of physical symptoms
    - blaming oneself for being sick
    - cursory or dismissive treatment by doctors and medical professionals
    - the inability to visit with friends, participate in family gatherings, and take part in other social events
    - feeling ignored by family or friends
    - suffering due to uncertainty about the future
    - coping with the disappointment of failed treatments
    - caretaker burnout”

    Amen, sister.

  • Dorothy Green

    Seems to me there are two kinds of chronic diseases discussed here.

    1)chronic disease – unknown cause – MS, viral disease
    2) preventable chronic disease – diabetes type II, heart disease and much of the arthritic conditions – all strongly linked to lifestyle – diet, being sedendary.

    They should not be considered under one rubic. For those who have chronic preventive diseases there is a lot a person can do to help themselves – many don’t and rely on medicines, don’t change their lifestyles and expect that they can partake of all the goodies in social settings – consider obesity here.

    It’s a very different situation when one has MS or an acute viral infection, especially when it rears its ugly head of depriving the victim of function.

    I like the solutions the author put forward but I am not sure they would be appropriate for the preventive chronic diseases.

    • http://warmsocks.wordpress.com/ WarmSocks

      Dorothy, with all due respect, I disagree. The author never said anything about preventing disease. This is about dealing with the aftermath. These tips are great regardless of the cause of disease. My friend had a heart attack last fall. Recently his follow-up testing showed a blockage. He’s making changes: approved exercises, different eating plan, losing weight… It’s perfect for him to be able to explain to people what happened, what his goals are, and what his limitations are. As he recovers, he’ll update us. As friends, we want to support him. It does no good to be judgemental and tell him that his disease is his own fault (which it is, and he was the first to acknowledge); it’s much better to know what the doctors have told him so that we can support him and do what we can to help him recover.

      And you claim “many of the arthritis conditions” are the patient’s fault. Really? There are nearly 100 types of arthritis. Which are you considering the patient’s fault? And why?
      Most people think of osteoarthritis and ignore the other gazillion kinds of arthritis. OA can be caused by being overweight and putting too much stress on joints, but it can also be a result of a healthy person being very involved in sports which wear down some of the joints after years of overuse. There are other types of arthritis that are autoimmune diseases. Nobody knows what causes these types of arthritis; there’s no cure. Oh, and autoimmune arthritis can be a cause of OA, too. Treatment of autoimmune arthritis is pretty strong medication, and patients have to deal with uninformed friends/family telling them not to take all those toxic chemicals because glucosamine or (insert snake-oil of your choice) and a little exercise is all that’s needed. They are wrong. The author’s tips on different ways to educate others, finding other things to talk about than one’s health, and realizing that some people won’t ever “get it” is spot-on.

      • http://myheartsisters.org/2009/11/14/bring-this-on-yourself/ Carolyn Thomas

        I agree with Warm Socks. Chronic disease – ANY chronic disease – can “deprive the victim of function” and that is the point of Toni’s helpful article – not whether the disease, in Dorothy’s judgement, is self-inflicted or not. If all medicine were practiced according to Dorothy’s limited criteria, we would never see reconstructive knee surgery on tennis players or other athletes who had clearly ‘self-inflicted’ their damage.

        I was a fit, healthy distance runner for 19 years before my heart attack. But I can tell you that living with a disabling chronic illness is every bit as devastating whether you’re an MS patient or a lifelong smoker living with emphysema. Dorothy, the suggestions here are indeed “appropriate for the preventive chronic diseases” – please re-read Toni’s article to see why.

  • http://www.howtobesick.com Toni Bernhard

    Thanks to all of your for reading my article and leaving these thoughtful comments. I agree that not telling friends and family is an option in some cases of chronic illness. The article is about how to talk to them if you do decide to share.

    I also think that, for purposes of this piece, it doesn’t matter if the chronic illness or condition was preventable had certain life-style choices been followed. Once your health is compromised, you may need the help of family and friends regardless of whether you could have prevented it from happening in the first place. (And who’s to judge anyway?) The point of the article was to help people communicate in the most effective way with others they care about and may need help from.

    Warmest regards to all of you,
    Toni