“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." - Susan Sontag, Illness as Metaphor
Chronic illness impacts every single area of your life. Your day to day energy levels. Your physical abilities. Your cognitive functioning. Your sexual well-being and romantic relationship. Your career trajectory. Your emotional well being and mental health. Your ability to socialize and connect with your community. Your basic activities of daily living like taking a shower or making yourself dinner.
Honestly, it’s hard to think of anything that remains the same. Sometimes, we can conflate this massive shift in our day to day life with a fundamental shift of who we truly are. We may feel completely unmoored to our identity and burdened by the process of starting over. I have found again and again that the importance of remembering who you are, regardless of diagnosis or illness, is essential in integrating this reality of chronic illness as a part of you and your story, not who you are as a person.
The road to a diagnosis is long and tedious, often full of medical gaslighting by doctors who refuse to admit a young healthy looking woman could actually be this sick. When you find the right team and you finally have a diagnosis, you start to re-examine your whole life, putting pieces into place with a puzzle that finally clicks together. This diagnosis brings validation. It also brings grief, anger, exhaustion and relief. Because now, we begin the journey of figuring out who we are again, with this label as a part of us. What does this mean for our marriage? What does this mean to start dating again? What does this mean for my desire to become a mother? What does this mean for the career I fought tooth and nail for?
There is no easy answer. Integrating this new part of ourselves helps us make sense of our identity without forgetting who we are at our core and what we love. Self compassion helps us challenge the narrative that we have to work to the point of burnout to achieve what we want or need. And self acceptance helps us challenge the perfectionism that often plagues high achieving women with chronic illness.
Redefining Success While Living with Chronic Illness
For many high-achieving women, perfectionism can become closely tied to their sense of identity and self-worth. You may be used to pushing through challenges, meeting expectations and measuring success by how much you accomplish. But when chronic illness changes your energy levels, physical abilities and capacity, the same expectations you've always held for yourself may no longer be realistic.
This can create an internal conflict between what you want to do and what your body is able to manage. Slowing down may feel like failure. Asking for help may feel like losing independence. And taking a break may bring up guilt, even when you know that rest is exactly what your body needs.
Learning to separate your self-worth from your achievements doesn't mean giving up your ambitions. It means recognizing that your needs and limitations may change, and that you are still worthy of compassion, connection and fulfillment regardless of what you accomplish.
Reclaiming Your Identity While Living with Chronic Illness
Internal Family Systems Tools for Living with Chronic Illness
Internal Family Systems, or IFS, can be a helpful integrative tool for women living with chronic illness. This helps us clarify our identity and foster self compassion and decrease depressive symptoms. When using IFS tools with your therapist, you will identify your wise self. You may also call this your adult self, your soul-whatever resonates with you. This wise self is able to defuse from your thought patterns, meaning your wise self is able to observe your thoughts without judging them or attaching emotions to them.
You then work with your therapist to identify parts of yourself. This is incredibly helpful in making a distinction that your chronic illness and pain may show up as a part of yourself (albeit sometimes a very large part!) but it is not your wise self, your adult self or your soul. Your wise mind can talk to this chronic illness part, asking it what it needs and what needs to be attuned to. Pain is information and we need to listen.
You can also start to identify other parts of yourself that we may confuse with our identity at times. Parts like the critic, the perfectionist, the anxious part-these, like our chronic illness part, may want to take over at times. By using IFS tools, we can start to recognize how we feel in our mind and body when we are in our wisest self and what it feels like when a part takes over.
These parts of ourselves are not good or bad. They are just parts that serve a purpose, often trying to protect us from harm or hurt. We can invite conversation with these parts of ourselves and remind ourselves what brings our wisest self joy, connection and meaning.
Acceptance and Commitment Therapy Tools for Chronic Illness
Another helpful tool for reclaiming our identity as a whole person who also lives with chronic illness is ACT, or Acceptance and Commitment Therapy. ACT is based on the idea that we need to identify our values, live in alignment with them and radically accept our realities in order to improve flexible thinking and commit to make changes where we can.
Let’s say you have identified a few values as independence, adventure, hard work and emotional intimacy. Before your diagnosis, these values helped determine what career you pursued, what your financial goals were, what trips you planned to take and prioritizing dating, friendships, or your relationship. You might have been identified as an investment banker, or a teacher or an artist, who loves to travel, spend time with friends and family. Now, it is hard to not see yourself as just “chronically ill”. There is a grieving process that occurs when you have to make changes to your career and social life due to capacity and pain.
These values you hold don’t go away or change when illness comes. You still want to work hard, take care of yourself, have amazing adventures and spend time with loved ones. ACT teaches us we can still live in alignment with these values by committing to accommodations or utilizing radical acceptance that things will be different just for now. We can’t predict the future, but we can take small steps every day to improve our stability.
This may sound like:
“I don’t like that I need to take medical leave AND just for now, this is what my body is asking for.”
“I don’t like that I can’t travel for work currently AND just for the next month, my body is needing extra accommodations.”
“I don’t like that I can’t hike and camp like I used to AND just for now, I can take a different kind of trip that accommodates my body, my needs and my mind.”
“I don’t like that I feel behind my peers not dating AND just for the next month, I know it is best to prioritize my well being first.”
“I don’t like uncertainty with family planning and fertility issues AND just for today, I know my partner and I are a team.”
Dialectical Behavior Therapy for Women Living with Chronic Illness
DBT tools, or Dialectical Behavior Therapy, is another helpful tool for managing the mental health impacts of chronic illness. DBT helps us practice down regulation techniques to calm the nervous system, thought defusion tools to help us observe our thoughts without getting caught up in them, radical acceptance and dialectical, flexible thought patterns.
Dialectical thought simply means accepting that two opposing things can be true and co-exist at the same time. For women with chronic illness this may sound like:
“I am anxious about the future and what this means for my career AND I can practice self compassion today while taking medical leave.”
“I am angry I can’t travel the way I used to AND I accept that for this upcoming trip, I need accommodations to make it successful and enjoyable.”
“I feel guilty for taking a break AND my rational mind knows that pacing is what my body needs to keep going.”
“I feel sad that I don’t have capacity for as much social interaction as I would like AND just for this weekend, I am choosing to balance both self care and time with a friend.”
Dialectical thinking can be challenging but keep at it. Our brain is neuroplastic-this means we are able to create new neural pathways and new neural networks with more flexible thought patterns over time. It helps us acknowledge that living with chronic illness means we live in the gray instead of black and white thinking.
Self Compassion Tools for High Achieving Women Living with Chronic Illness
Using our IFS tools, we may notice our inner critic takes over when we are in a flare. This critic may sound like:
“You look fine-no one will believe you if you take a sick day.”
“You will fall behind if you slow down.”
“You are lazy if you rest.”
“This pain is in your head, you must be making it up.”
The inner critic is loud, and it is not always speaking the truth. For high achieving women, this critic may have felt like fuel in the past to keep going and achieving. Now, living with chronic illness, pushing past our limitations is a recipe for emotional and physical burnout.
We don’t have clear data correlating high achievement in women and perfectionism with chronic illness. However, we know that women make up 80% of the population living with autoimmune conditions. We also know that high achieving women share traits of maladaptive perfectionism, overworking and masking. Over time, this creates a “fight or flight loop” of emotional dysregulation, heightened cortisol production and inflammation. Add a chronic illness to this cycle and things get complicated.
Self compassion is a life long skill, so be patient with yourself. You may be reading this recognizing that the old achievement and perfectionism mentality you have strived to reach doesn’t serve you any more. Brene Brown notes perfectionism is not about self improvement, but about “earning approval and acceptance”. Perhaps a glimmer in the grief of chronic illness is the opportunity to unlearn the narratives we grew up with to help us remain safe.
You are allowed to pace yourself.
You are allowed to take breaks.
Rest is actually productive for your body.
You are allowed to change your mind.
You are allowed to accommodate your mind and your body.
You Are More than Your Chronic Illness
It is essential that the people in your life understand how chronic illness impacts your day to day. It is essential that you embrace the changes you need to live a life with more stability, more joy and less flares. This does not mean that chronic illness becomes who you are. It is an important part of your life and journey, but you are still you. You are the funny, kind, intelligent woman you have always been. You are the artist, the adventurer, the writer, the loving friend and sister. And chronic illness is a part of your journey that you are learning to befriend-one day at a time.
Therapy for High-Achieving Women Navigating Chronic Illness, Identity, and Perfectionism in New York
New York Women’s CBT offers niched, expert counseling for women’s health issues. We offer both individual and group therapy for chronic illness and utilize an integrative therapeutic approach to healing, including CBT, DBT and ACT tools. Our therapists offer 100% Telehealth services to remove barriers and help you get the care you need in the comfort of your home. To get started:
1. Learn more about our team.
2. Reach out for your free phone consultation.
3. Start getting the support you deserve.
Frequently Asked Questions About Chronic Illness, Identity, Self Worth, and Perfectionism
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Chronic illness can impact nearly every area of your life, from your career and relationships to your physical abilities and daily routines. When so much changes, it's understandable to feel disconnected from who you were before your diagnosis. But chronic illness is a part of your life, not your entire identity, and your worth is not determined by what you're able to accomplish.
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For high-achieving women, slowing down, asking for help or needing accommodations can bring up guilt and frustration. Practicing self-compassion, recognizing your inner critic and challenging the belief that you must always be productive can help you redefine what success looks like while living with chronic illness.
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Therapeutic approaches such as Internal Family Systems (IFS), Acceptance and Commitment Therapy (ACT), and Dialectical Behavior Therapy (DBT) can help you reconnect with your values, challenge unhelpful thought patterns and develop tools for navigating the emotional challenges of chronic illness without losing sight of who you are.
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Reconnecting with yourself doesn't mean returning to who you were before your diagnosis. It means recognizing that your values, interests and the things that bring you joy are still part of who you are, even if how you experience them has changed. By practicing self-acceptance, making accommodations and focusing on what matters most to you, you can begin to build a life that honors both your identity and your needs.