Life after a chronic illness diagnosis such as an autoimmune disease can feel daunting and uncertain.
It can feel like you’ve suddenly been dropped into a strange new world where nothing makes sense anymore.
It can feel like you need to give up on many things that were once a part of your life.
The things you used to do effortlessly – going out with friends, taking brisk walks, or working long hours – may now seem impossible due to pain, fatigue, or other symptoms. It’s understandable to feel frustrated, angry, and hopeless that your previous abilities and independence have been taken away.
But while a diagnosis changes some things, your life does not have to stop being meaningful. With a shift in mindset and prioritising consistent self-care, you can learn to create a new fulfilling normal.
“Illness doesn’t make you exceptional or special, it makes you human. Rather than being defined by your sickness, you might try defining yourself by the things you love.”Suleka Jaouad
You are more than your diagnosis
Does getting a diagnosis mean that the life you once considered to be normal is over?
The thing is, a diagnosis provides medical information, but it doesn’t determine your self-worth or capabilities outside of that one aspect. And while getting a chronic illness diagnosis or living with a chronic condition does impose limitations in terms of what you can do now, it’s not the end of a meaningful and fulfilling life.
It simply means that you need to create a “new normal” that works for you.
When my 7 year old daughter was dealing with severe eczema, I had to redefine what our “normal” life looked like. With all the dietary restrictions that she was on, she could not eat any of the foods in the birthday parties that she wanted to attend. Instead, she had to have the foods that I used to send with her.
I remember calling the birthday boy or girl’s mother and asking for the menu.
Then I tried my best to replicate almost the entire menu at home. But with gluten free and dairy free options. This way I could ensure that she would not completely miss out on all the birthday goodies at the party.
It was really hard for her, but what helped her to deal with this was to understand that this was our “new normal”.
She understood that following this lifestyle would help her body to heal and allow her to focus on things that she enjoyed doing.
Most importantly, she understood that her diagnosis was not her identity.
I have written more about this and you can read it here.
Just like my daughter, you likely have passions, relationships, skills, and dreams that remain untouched by physical limitations. Keeping these at the forefront can help you hold onto your identity beyond being a “sick” person.
Making space to grieve
However, processing the grief over losing your old abilities is an important part of moving forward.
Ignoring these feelings will only lead to more pain and bitterness. Instead, take the time to purposefully make space to grieve through different activities such as journaling, therapy, support groups, or any outlet that feels right for you.
Your goal isn’t to dwell in grief, but to fully honor those emotions so you can find ways to make room for joy again.
As blogger Jenny Senft writes:
“Give yourself permission to mourn what you’ve lost, whether it’s freedom, a job, friendships, physical ability, energy, stamina or something else. The losses are real, so the grief is real.”
It’s not about your disease, but your mindset
While disease symptoms may be outside your control, your mindset and reaction to them isn’t.
Aren’t there enough people that you know or have heard about who have been dealt with major blows in their life?
This might be in the form of a devastating illness, a terrible accident, a loss of limb, rape or a family tragedy. And even then, they have still managed to find a way to lead a life that is inspiring and empowering for all of us?
On the other hand, what happens if you allow your diagnosis to become your sole identity and your life to be consumed by your disease?
You may feel
isolated because you are not able to participate in activities that you used to before
frustrated and angry around losing your independence
you may feel an overwhelming sense of grief, loss, or hopelessness about your body’s capabilities
As the saying goes: “Pain is inevitable, but suffering is optional.”
So how you chose to frame and respond to your diagnosis has a big impact on your ability to adapt and heal.
For instance, if you believe your condition must limit you forever, you may isolate yourself and remain stuck in anger and hopelessness. But if you view it as a challenge to grow through, you can take steps to nurture your whole self and create a fulfilling “new normal.”
Creating your new normal
Creating your “new normal” requires you to be patient and compassionate with yourself as you gradually rebuild a lifestyle aligned with your current abilities.
Consider part-time or freelance work if a regular job is too demanding. Let go of perfectionism and be your own cheerleader. Ask for help from loved ones so you don’t shoulder the burden alone.
Most importantly, celebrate each step forward, no matter how small it seems. Progress takes time, but you have the power to create a meaningful life on your own terms.
I have talked more about this in the video shared below.
3 unique ways to rediscover your purpose and thrive
Three ways that you can rediscover your purpose and lead a meaningful life and thrive are
1.Empower yourself through self-care
You need to make your self-care a priority.
Self care looks like this-
Learning to set firm boundaries around your limited energy by saying “no” more often. Sticking to a consistent sleep routine. Eating nutrient-rich, unprocessed whole foods. Exploring alternative therapies and herbal remedies for symptoms such as pain relief. Spending time in nature to lower your stress levels. And asking your loved ones for help.
You can also use a framework like CARE to remember the core components of self-care:
C- Create an empowering self care plan
A – Access your inner wisdom and guidance
R- Replenish and restore balance
E – Embrace stress with ease and softness
This is the same model that I have developed over years of coaching and use inside my coaching programme “Healing from within” for women with autoimmune conditions
2. Get creative about finding purpose
Expressing yourself through creative outlets makes you come alive.
it helps you tune into the present moment and find beauty amidst struggle
This could include art, music, writing, gardening, photography, dance, or anything else that sparks joy. You can join online and offline communities to share your passions with others. Don’t underestimate the power of small creative acts to lift your spirit.
As blogger Ashley Nestler wrote:
“Healing isn’t about a destination. It’s a daily practice of presence and compassion with ourselves.”
One of the best books I have read on this topic is “Creatrix- she who makes” by Lucy H Pearce
3. Cultivate daily contentment
Big goals and achievements may need to take a backseat as you adjust to a slower pace of life your body needs right now to heal.
However, you can actively cultivate daily contentment through:
- Maintaining a gratitude journal
- Savoring small pleasures like books, music, tea, time with loved ones
- Celebrating tiny steps forward
- Finding beauty and humor in ordinary moments
- Nurture your spirit through inspiring media, podcasts, books, journaling, or spiritual practices
You will find that as you do this, you are able to find moments of joy even in the most difficult of times.
Your diagnosis does not define who you are
At the end of the day, remember that while your diagnosis may have changed the direction, you still hold the pen to write your next chapter. A condition does not have to stop you from living purposefully.
So let me ask you.
Do you really want to live a life that is limited by your belief that your life can’t be fulfilling and meaningful because of your diagnosis?
Or are you ready to embrace the possibility that you have the power to create a new vision of normalcy, contentment and purpose on your own terms?
Your diagnosis is simply one part of your complex human story – it does not dictate the entirety of who you are or the meaning you deserve to find in this world. You can still be the hero of your own life.
As blogger Jenny Senft beautifully stated:
“I am not what has happened to me. I am what I choose to become.”
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