How to Cope With Chronic Health Conditions

How we think about and cope with chronic disease makes a huge difference to our experience and quality of life. Our mindset and beliefs can shift us from surviving in anger and grief to moving forward toward new ways of being. We have considerable influence over our mindset, irrespective of if and when the biomedical symptoms are properly diagnosed and treated.

As a psychiatrist working with the complex chronic disease community for over 25 years, I have observed that the biomedical path and the psychological/emotional paths are parallel. You do not have to get better physically to start feeling better emotionally. The reverse is also true. Some people start recovering physically, but are so traumatized by the illness experience that they continue to live in a state of fear and unresolved grief.

To help people move forward, I have used Patricia Fennell’s coping model for over 25 years. Although written with ME/CFS in mind, it is generic for any chronic disease severe enough to cause significant crisis and loss. Fennell’s book, The Chronic Illness Workbook, is very accessible and is filled with useful exercises to help you think through your situation and identify your priorities now that your life has changed forever.

In this blogpost, I focus on how you can support yourself through the phases of coping with chronic illness. The description below of how to do this is summarized from Fennell’s book.

What Is the Fennell Model for Coping With Chronic Conditions?

1.  Crisis Phase: You experience a sudden onset or worsening of symptoms. There is often confusion, fear, and a sense of loss of control.

Treat Yourself With Compassion

• Acknowledge the shock and fear you may be feeling. It’s normal to feel overwhelmed.
• Seek medical and emotional support rather than trying to "tough it out" alone.
• Rest and allow yourself time to process what’s happening. Your body and mind need care.
• Avoid self-blame—chronic illness is not your fault.

2.  Stabilization Phase: The illness persists, and you start recognizing that it is not a temporary condition. You begin searching for treatments, explanations, and how to adjust to your new circumstances.

Treat Yourself With Patience

• Accept that you may not have all the answers yet. This is new for you, and learning how to support your body takes time.
• Allow yourself to grieve losses, such as changes in abilities or lifestyle.
• Pace yourself—avoid overexertion while adjusting to new limits.
• Learn about your condition without becoming overwhelmed by too much information at once.
• Be gentle with yourself when experiencing frustration or setbacks.

3.  Resolution Phase: You start integrating the illness experiences and learning into your identity. You tentatively accept their new reality but still experience ups and downs.

Treat Yourself With Flexibility

• Redefine success in a way that acknowledges your new reality.
• Develop self-care routines that support your physical and emotional well-being.
• Seek supportive relationships and let go of those that don’t serve your well-being.
• Let yourself feel emotions without judgment. You are allowed to have bad days.

4. Integration Phase: For brief periods of time, you fully incorporate the chronic illness into your identity and life. You find meaning or purpose despite your health challenges.

Treat Yourself With Respect

• Honor your journey—you have gained wisdom and resilience.
• Use your experiences to help others (if you feel comfortable doing so).
• Celebrate your strengths rather than focusing only on limitations.
• Advocate for your needs confidently and without guilt.
• Continue self-care and balance, ensuring you don’t push yourself beyond your limits.

I ran groups using this model for 25 years, and most people came to a better place emotionally. They found a new understanding of their situation and developed more peace and acceptance of their condition. Some of them came to this despite disbelief and a strong wish to keep fighting rather than accepting.

Why would one want to make this shift? Isn’t it better to keep fighting? Doesn’t acceptance mean you are giving up? The opposite is true. As long as you stay in anger and grief, you continue suffering. Only through acknowledging and grieving your significant losses can you move forward to a life that is worth living. I’m not saying this is easy. Grief is scary and intense. It takes courage and perseverance. But I can tell you from my own lived experience and that of thousands of patients that it is worth it.

Fennell stresses that although difficult to see at first, the crisis of disabling disease offers opportunities as well as challenges. What kind of opportunities? Serious illness puts a hard stop to many of the activities you are doing. You may be forced to stop work, stop volunteering, and stop activities you enjoy and are committed to.

In the pause that follows, there is the opportunity to evaluate your values and goals and, as you heal and recover, focus your attention on the things of most interest and importance to you. If you are severely ill, it may be difficult to find ways to move towards those values and goals. Creativity is an asset here. The goals might look different from how you imagine them. What kinds of things do people discover or change?

• Many people have decided to quit their high-stress jobs or professions.
• Many have taken the unexpected time to spend with loved ones, albeit differently than how they might have imagined.
• Some have decided to make changes in key relationships.
• Some have decided to back away from the constant search for more medical treatment and focus on their emotional and spiritual health.
• Some have taken up new interests, sometimes things they have wanted to do for a long time but never had the time or courage to do.

Have you heard the line "When I am old, I shall wear purple?” I have always loved that line. It is from the poem Warning by Jenny Joseph (1932–2018). The poem is associated with the positive aging movement and inspired the Red Hat Society. Recently, on my travels, I came across a group of women on a Red Hat Society outing—they all had outlandish purple outfits and elaborate, large red hats—at a nature preserve. It was fabulous. As you read the poem, substitute “when I am recovered” for “when I am an old woman” and see how it feels to you. The Red Hat Society is for older women. But I think with this substitution, people of any gender can identify with the poem.

Here is the whole poem for inspiration.

Warning

by Jenny Joseph (London: Souvenir Press, 1974)

When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me,
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick the flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old and start to wear purple.

This blogpost was inspired by a recent podcast interview I did on the Looking at Lyme podcast, an educational podcast created by the Canadian Lyme Disease Foundation. People with chronic Lyme disease are in a different and perhaps more challenging position than the people with ME and FM that I worked with. With ME and FM, there are no widely accepted, effective treatments. But with Lyme disease and some other complex chronic conditions, there is a promise of treatment. There are stories of people getting accurately diagnosed, leading to effective treatment and recovery.

This hope of significant improvement (often feeling just out of reach because of all the limitations accessing Lyme-literate practitioners) makes it less appealing to do the difficult psychological work of grieving. Why would you do this when you could spend your energy trying to find effective treatment?

I attended several ILADS conferences over the years and heard some of the most experienced physicians give courageous talks about the challenges of treating Lyme disease. I learned that even with expert care, people don’t always respond easily or quickly. Many people respond and then relapse, sometimes for decades. Lyme-literate treatment is a very difficult and often expensive path. It takes an emotional toll.

So, whether you anticipate a cure right around the corner or you are feeling despair about being able to access effective treatment, I recommend doing the hard work of grieving. Fennell’s book is an excellent guide. Many people who were unable to attend my groups used the book on their own and benefited.

To get started, inspired by Jenny Joseph’s poem, ask yourself,

What do you want to do when you recover?

How could you start on that path now?

Why wait?

To order a copy of Let Your Light Shine Through click here. The manual is available as a digital download, a B&W coil-bound and a color coil-bound.