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How to Adapt to Life with an Incurable Condition

COPD Basics

February 19, 2024

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Photography by Maskot/Getty Images

Photography by Maskot/Getty Images

by Hannah Shewan Stevens

•••••

Medically Reviewed by:

Debra Sullivan, Ph.D., MSN, R.N., CNE, COI

•••••

by Hannah Shewan Stevens

•••••

Medically Reviewed by:

Debra Sullivan, Ph.D., MSN, R.N., CNE, COI

•••••

Living with an incurable condition can take a toll beyond the physical. Acceptance, processing grief, and embracing community are all important factors in caring for yourself well.

Many diseases remain incurable, weaving their way into life with waves of remission and relapse, wellness and sickness.

It’s easy to get swept away in the overwhelm and grief that can come with reshaping your life to accommodate long-term illness.

Still, it’s possible to forge a fulfilled life as one of the legions of “incurables” living alongside various conditions around the globe.

What does it mean to be an ‘incurable’?

Being incurable, like me (hi!), applies to anyone living with a condition with no known cure. This encompasses countless conditions, including migraine, psoriatic arthritis, and multiple sclerosis.

The 2 million people living with chronic migraine in the United States are just one segment of this vast group.

Yet there is one silver lining here: as this beautiful community proves, you’re not alone.

While different treatments help patients manage the various effects of migraine, there’s currently no cure for this debilitating condition.

Impact of ‘incurability’ on mental health

In one survey by the American Migraine Foundation, 60% of migraine patients had anxiety disorder, 50% reported depression, and 25% had symptoms of PTSD.

The impact of incurable migraine on mental well-being is well documented. The longer a person has to deal with a severe condition, the harder it is to bear the mental toll.

“Living with serious medical problems creates depression, anxiety, fear, sadness, and anger,” says Iris Waichler, MSW, LCSW. This can include a “sense of loss and grief, and sometimes even guilt if they must rely on others for care.”

Building the necessary strength to manage long-term illness requires focused self-care.

Processing the shock and moving through the grief

When what we might have thought was a simple bout of headaches is diagnosed as chronic or episodic migraine, the shock may feel debilitating, particularly if migraine is significantly disrupting your day-to-day functionality.

“Working through the grief that may accompany an incurable diagnosis involves recognizing and expressing emotions surrounding the condition,” says Giuseppe Aragona, MD

Aragona suggests the following to aid in the adjustment process:

  1. Focus on aspects of life that can be controlled.
  2. Maintain a sense of purpose.
  3. Adapt to new routines.

“Emphasizing the importance of ongoing self-care, both physically and emotionally, is essential in fostering resilience and improving overall well-being when facing an incurable condition,” Aragona says.

The initial shock may take time to wear off, and there’s no predetermined deadline for when you “should” be ready to accept a diagnosis. Building the necessary strength to manage long-term illness requires focused self-care, so give yourself permission to set aside the precious time required to build it.

“You can’t expedite grief, even if time is running out,” says Charlotte Fox Weber, psychotherapist and author of “Tell Me What You Want.”

This can take some of the pressure off.

“If you’re raging, arguing, or wallowing, it’s liberating to recognize your stubbornness and loosen the grip of a rigid perspective,” she adds.

Embracing acceptance and avoiding overidentification

It’s easy to get lost in the frustration of “incurability,” but the key to living a full life with an incurable condition is acceptance. It’s not possible to create a fulfilled future without first accepting the reality of your present.

“Denial can be dangerous and destructive, but it’s also important to be compassionate to the defensive parts of ourselves,” says Weber. “As TS Eliot said, ‘Humankind cannot bear very much reality’ — you can acknowledge the truth of a situation, but truth crusading can be torturous.”

No, you don’t need to face up to the grim reality of your illness’s consequences every second of the day — that’s untenable.

However, it’s important to acknowledge its existence and work alongside it instead of resisting it, especially if your denial is affecting treatment.

It’s not possible to create a fulfilled future without first accepting the reality of your present.

Managing treatment

Your medical team will likely become a consistent presence in your life when living with an incurable disease. Communicating clearly with them will be the difference between effective and ineffective treatment.

“Managing chronic migraine symptoms requires a comprehensive approach,” says Aragona. “This may involve medication adjustments, stress management techniques, and establishing a consistent daily routine. Keeping a migraine diary can help identify triggers and patterns, aiding in personalized management strategies.”

Maintain a personal record of your interactions with medical personnel, too. This means there’s always a backup in case anything is misinterpreted or not recorded in your interactions.

Try not to detach from medical services, even though there’s no simple treatment for your condition. Medicine develops every single day, and while there may not be a cure today, it could arrive one day.

Implementing self-care in your daily life

Broaden your treatment plan beyond medication. Prioritize self-care activities, starting with the basics.

This can include:

“If you’re stuck in a bed, a soft pair of pajamas won’t solve everything, but self-soothing is still possible,” says Weber.

Textures, creature comforts, and pretty details can make all the difference, she adds.

“Keeping yourself company in a kind way happens on every level. Make a point of intentionally seeking uplifting conversations. Protect yourself physically and emotionally, especially when you’re thin-skinned,” Weber says.

Try journaling every day to keep a record of the good days. When the bad days come, it’s hard to remember the good.

Embracing your people

It doesn’t have to be all doom and gloom. There is beauty in all lives, even those touched by pain. Find community and support among others who understand what life looks like with an incurable condition.

Your loved ones will be a key part of your support network, but if they don’t have any experience with chronic illness, they may struggle to empathize on a deeper level.

“Allow people to help you when they are actually capable of being helpful, and play to their strengths and honor what works for you,” says Weber. “If a friend makes you laugh, let that be helpful. If another friend lets you sob freely, go there.”

It’s important to stay open to people surprising you.

“As shocking as it might be that one person lets you down, another person you never imagined closeness with can come into your life in a new way,” says Weber.

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Takeaway

As macabre as it may sound, life is 100% fatal. When you’re living with an incurable condition, that truth may feel a little bit more real.

But incurable or not, life can be full of beauty as much as it can be full of pain. When we accept the painful parts, the fleeting nature of what’s beautiful can seem all the more profound.

Medically reviewed on February 19, 2024

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About the author

Hannah Shewan Stevens

Hannah Shewan Stevens is a freelance journalist, speaker, press officer, and newly qualified sex educator. She typically writes about health, disability, sex, and relationships. After working for press agencies and producing digital video content, she’s now focused on feature writing and on best practices for reporting on disability. Follow her on Twitter.

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