Navigating the Ups and Downs of Chronic Illness When Life Throws You More Lemons

Living with chronic illness means facing a rollercoaster of challenges that most people don’t see. If you’ve noticed my absence online lately, it’s because I’ve been caught in one of those difficult cycles—the ups and downs of chronic illness are real and relentless. Today, I want to share my experience with you, hoping it helps others who are also on this chronic illness journey feel less alone and more understood.

A quiet space for rest and healing

The Reality of Life with Chronic Illness

When you live with chronic illness, every day can bring something new. Some days feel manageable, even hopeful. Other days, a chronic illness flare up can hit hard, making simple tasks feel impossible. It’s not just the physical symptoms that weigh on you—it’s the emotional toll of chronic illness that often goes unnoticed.

For me, these flare ups don’t just disrupt my body; they shake my mental health too. The unpredictability creates anxiety and frustration. I’ve learned that acknowledging this emotional side is crucial. Ignoring it only makes things worse.

Why I’ve Been Quiet Online

I want to be honest in this chronic illness honesty post. The reason I haven’t been active online is because I’ve been navigating a few particularly tough flare ups following all of the things that life has thrown my way. During these times, my energy drains quickly, and my pain spikes. It’s hard to keep up with the demands of social media, even when I want to share and connect.

This silence isn’t about giving up. It’s about survival. I’ve had to prioritize rest and healing over everything else. That means stepping back from the chronic illness blog community I love, even if just temporarily. It’s a reminder that self-care isn’t selfish—it’s necessary.

In July 2025, I lost my mom suddenly and unexpectedly. While she had had her share of health issues, there was nothing to indicate that her condition was one where she was nearing death. My family spent the weekend traveling back and forth my oldest son's soccer tournament and it wasn't uncommon to go a few days without speaking with my mom. When we returned and called to check in on her and tell her that our son's team won the tournament, we were met with unanswered phone calls and messages. Immediately, I felt it in my soul that something wasn't right and I headed the few blocks to her apartment. I peered inside and saw her living room light on and my heart sank to my feet. She NEVER kept the light on during the day. Upon entering, I found her on the floor in her living room. She had passed away. My immediate response was to get outside to make sure my boys didn't come in and see her, and then I called my husband screaming.

The next hours, and days, and weeks, are a blur. I was numb, in shock, in denial, and most of all, I felt guilty. We all know that chronic illness flares can be triggered by many things, but what I experienced over the next few weeks, and to be honest, the last few months, has been one of the most challenging times since being diagnosed. My grief, stress, and emotions hit my body hard. I'm currently on my third round of a steroid taper since her passing. I've been in continued therapy working through all of the mental health pieces and my medications have been adjusted across the board by all of my various specialists. Still, 7 months after her passing and a nasty GI virus later, my body has found itself in yet another flare necessitating my third course of steroids.

So it goes without saying that my last 7 months have been focused on grieving, managing stress and emotions, still being present for my family, taking care of all of my mom's affairs, and finally, trying to catch up on the financial mess we had been in from waiting so long for my disability to be approved. I have struggled to find the energy to complete all of this; hence, my extended online absence.

The Emotional Toll and Grief of Chronic Illness

Living with chronic illness means grieving parts of your life you once took for granted. I grieve the spontaneity I lost, the plans I had to cancel, the career I had built, the stability of our life, and the energy I no longer have. This grief is a quiet companion on my chronic illness journey which has only been exacerbated by the grief of losing my mom.

The emotional toll of chronic illness can feel isolating. Friends and family may not fully understand why you can’t always “push through.” That’s why sharing these feelings openly is part of vulnerability and healing. When I allow myself to be vulnerable, I find strength and connection. Especially in the time since my mom's passing I find myself feeling more alone than I have ever in the past. My husband and kids are supportive, as are my in-laws. Beyond that, I don't hear from my brother or his family and I feel as though my friend circle has pretty much disappeared.

Navigating Chronic Illness Flare Ups: Practical Tips

Managing flare ups is a skill I’m still learning. Here are some strategies that have helped me cope:

• Listen to your body: When symptoms worsen, slow down and rest. Pushing through often leads to longer recovery. (This one is SO hard for me.)

• Create a flare-up plan: Have a list of go-to activities that soothe you, like gentle stretching, meditation, or watching a favorite show.

• Communicate your needs: Let friends and family know when you need support or space.

• Track your symptoms: Keeping a journal helps identify triggers and patterns. (I have found that an academic planner works the best for me.)

• Seek professional help: Mental health support can be vital during tough times. (I honestly don't know where I would be right now without the support of my mental health team.)

  
  

These steps don’t erase the difficulty, but they make flare ups more manageable.

Finding Strength in Vulnerability and Healing

One of the hardest lessons I’ve learned is that vulnerability is not weakness. Sharing my struggles with chronic illness and mental health has opened doors to support and understanding. Writing this chronic illness blog has started to become a form of therapy for me, even when I’m not actively posting.

Healing is not linear. Some days I feel strong and hopeful. Other days, I feel overwhelmed. Both are part of the process. Embracing this reality helps me move forward with more compassion for myself.

Moving Forward Together

If you’re living with chronic illness, know that your experience is valid. The ups and downs of chronic illness are tough, especially when paired the ups and downs of life, but you don’t have to face them alone. Whether you’re dealing with a flare up or the emotional weight of this journey or a life event, reaching out and sharing your story can be powerful.

I plan to return to this space more regularly, sharing honest updates and practical tips. For now, I’m focusing on healing and self-care. If you’re struggling, try to be gentle with yourself. Life with chronic illness is unpredictable, but together we can find ways to navigate it with courage and hope.