Birthdays in Chronic Illness: How do you cope with another year reminding you you're still sick?

The Truth About Birthdays When You’re Chronically Ill

Life is rarely how we envisioned it would be, isn’t it? We set out our plans, take mental photographs of our dreamy ‘someday’, and hope with all we have that it’s as good or better than what we’re thinking it might be.

And then reality hits. You’re fighting a disease that has stripped you of normal, spending your days swallowing pills, sitting in waiting rooms, and staring at your bucket list with all the empty check boxes. This isn’t where you thought you’d be.

This weekend is my 30th birthday.

I’m having a hard time figuring out how to navigate all my feelings with this milestone year. There’s a sadness here, I’m not going to lie. I could paint this whole turning 30 thing real pretty. Tell you all the nice, cozy words and make you feel more comfortable.

But instead, I’m going to tell you the truth. That this isn’t the life I dreamed I’d be living. It isn’t how I pictured my twenties or thirties to look. And this whole fighting disease thing? It’s often been too much for me to handle, despite what the pretty phrases try to convince me of.

So here I am, struggling every day and fighting with all my heart, mind, soul and strength. I’m disabled and spending my days treating, writing and hoping for healing from an awful disease. And instead of holding my first child in my arms, I am mama to one of heaven’s babes.

I honestly don’t feel like celebrating this year.

In a sense, it feels premature. Birthdays in chronic illness tend to shine a light on the fact you’re still sick. You’re still in the same place as (and sometimes worse than) last year. It doesn’t feel like the time you bring out the cake or sing three choruses of “happy birthday”.

I’d rather throw confetti for everyone else on their special day and leave my moment for later on. For better days. For the year my health no longer limits or affects my every move. Maybe even for when I can eat something delicious without feeling like I’ve been hit by a truck afterward.

But this year, I’ve deciding something. That this milestone birthday can be whatever I want it to be. It can simply be a moment of recognizing the fact that I’ve won the fight for my life one more year. Lyme may have nearly won the battle on more than one occasion, but this fact rings true:

I’m still here.

When Birthdays Feel Bittersweet: My Thoughts on Turning 30 as a Chronically Ill Woman

I’ve held onto hope with scraped and bruised hands and advocated for Lyme disease awareness. I’ve spent hours upon hours writing from the raw corners of my heart and linking arms with other chronically ill fighters near and far.

And you know what? I’m giving myself permission to embrace those truths, but also let the tears of sadness fall. Without holding onto guilt or belittling their validity. Because these tears of sadness are honest and real. They’re a reflection of how hard and how long I’ve been fighting. Of how badly I’m hoping for healing, even just “better” someday.

But tears aren’t the only thing here. There are smiles and laughter and sun rises over the hills that I can see from my front lawn. There are ocean waves crashing against the Oregon coast as I look out the window from our birthday weekend retreat.

I catch myself watching my husband as he helps set me up for sleep each night and I feel the warmth of his care. The depth of his unwavering love.

I see friends and family rally around us to support our medical fundraiser (again) and I’m reminded of the good in the world. The depth of what it means to be a community who leans on each other.

So when these milestones come to remind us that we’re still sick, still single, still not parents or still living at home? We lean on each other. We allow ourselves to grieve. And we embrace the gifts that bring light and life to our moments.

Let’s remember this truth, friends: we’re also still here. Daring to dream and holding on to hope.

And that fight and resilience will always be worth honoring.

 

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21 comments

  1. Faye Kallas says:

    Hi Kami, I am with you every step of this journey we are on.. Right now I am in bed with a bad headache & it doesn’t seem to want to go away even thou I have prayed but I still trust & love Him!! Hey happy birthday!! Love the scenery!! Have a blessed time!

  2. Valerie says:

    Happy Birthday Kami. I spent my 20’s and 30’s sick and now I’m still fighting it in my 40’s. Keep encouraged dear friend. I appreciate your words. Blessings and healing for your heart and soul. Hugs, Valerie

    • Kami says:

      Thank you so much, Valerie. You are such a fighter! I appreciate your encouragement and hugs – sending gentle healing hugs right back. Xo

  3. Lauren says:

    I agree. Spending your birthday sick is not fun. I spent my sixteenth birthday in bed, but I had fun otherwise.
    I’ve learned, through patiently waiting the symptoms out while in bed, to chose joy and that, no matter your circumstance, you’re still here. Two days before my sixteenth birthday, I went into anaphylaxis, so you can imagine my thankfulness to be even having my birthday.
    Thank you so much for this post, and a very happy birthday!

    • Kami says:

      Wow, Lauren. What a rough way to spend your sixteenth birthday! I’m sure the gratitude for breath and life was deep and so very raw. So thankful you’re still here! And thankful for your sweet birthday wish! Xoxo hugs to you!

  4. Clodagh says:

    Another amazing post as always Kami. Your words are so powerful and I can relate to them. It makes my Lyme journey feel less isolating when I hear your experiences that mimic mine. Stay Strong

    • Kami says:

      Hi Clodagh. Thank you so much for reading and commenting. It helps me to hear others stories and find others who understand, too. Happy to connect with you here!

  5. Brittany W says:

    Birthdays are definitely bittersweet when you’re ill. I should be graduated college, should be this, should be that….but I am where I am. Lots of emotions, and happy birthday! (Or at least semi-happy one.)

    • Kami says:

      “I am where I am.” I hear you, girl! Lots of emotions, indeed. I am thankful for the moments of happiness that sprinkle in amongst the struggle and sense of loss. My birthday was a lovely one in spite of mixed emotions. Thank you for the birthday wish! โœจ

  6. Happy Belated Birthday Kami!
    I really enjoyed your article! If I’ve learned anything about the chronic illness experience it is this same lesson. Before I became disabled, I lived too far in positivity, not paying attention to the needs my illness tried to illuminate. Now after being disabled for a year and a half, I must work to be realistic with my disease process while not sinking in the sadness. Indeed, A delicate balance to achieve!
    Thanks for sharing and hope your days are filled with just the right amount of spoons <3

    • Kami says:

      Thanks so much, Dawn! I can really relate to what you shared about not paying attention to the needs of your illness. It’s a process finding a balance – took me becoming disabled to finally start listening! Sounds like we’re two peas in a pod ๐Ÿ˜‰ Sending you healing hugs and much love! Thanks so much for reading and commenting!

  7. Janka says:

    Hi Kami,

    Happy belated birthday to you* It must have been wonderful to celebrate it in such a beautiful place! I feel with you in the pain of absences and losses conditions which seem to freeze us in space and time. I celebrated my birthday a couple of days ago myself. It spent a beautiful day by the sea. Especially my feet and my hair felt it:) Your post made my cry as I particularly felt the loss of those who used to feel so close and true…Thank you for standing with us Kami, for daring to express yourself with light and lightness from places of despair and dark. I truly hope to find points of authentic expression myself that would connect me with others but they feel like a rare stream in the scorching desert and that hurts badly with loneliness.
    Wishing you Kami, and me, and everyone hurting joy, many powerful moments of reprieve, insight and loving inspiration*

    • Kami says:

      Thanks so much for the birthday wish, Janka. A happy belated birthday to you as well! I’m so glad you could enjoy being near the sea, too. It’s very soothing. I find that nature in general does that a lot for me. I’m sending you gentle hugs for tall the ache and loss that is felt on these particular “special” days. Thank you for sharing here. Much love to you!

  8. Susan says:

    Hi Kami,
    Belated birthday wishes, I hope today is a better day for you.
    I read your article with interest as my birthday is almost upon me. It caused me to reflect on my 30th (oh so long ago -ugh). As I have lived with disability all of my life, I could relate to your comments, maybe with slight differences. My disease is progressive (think of it like MD/MS) and of course it has disrupted many aspirations and dreams along the way, but I find adjusting gets easier as I age.

    While I agree with your final remark – still here, I dare say youโ€™re selling yourself and and your generosity short. You exude a lovely message in your blog, that expression is very valuable.

    This year (Sept 6) I will be 59. I suppose next year is considered a milestone, but to my mind every year is, and I make sure to celebrate. And, to ensure I do – my partner and I cast a month long net to ensure there will be one day (often more) when we both feel up to dining out or doing whatever takes our fancy.

    My mother had the same disease (inherited) and died when she was only 39, (I was then 11) so I feel blessed to have every year. I think the loss of her being in my life reminds me just how precious everyday is; even those that are less than terrific.
    It was lovely to find your blog and I wish you a happy birthday everyday.
    Sincerely, Susan

    • Kami says:

      Hi Susan,
      Thank you so much for reading the blog and for sharing your story and perspective. It’s so appreciated. And your words toward me are so kind – thank you for that! I see your birthday is around the corner and so I wish you many good days this month to be able to celebrate with your partner. Love your spirit of making it happen within your limitations! Sending you gentle hugs. <3

  9. Sarah Chard says:

    Oh yes, birthdays and new year’s are painful reminders that a “new start” may not quite be there when you have a chronic illness. I’m glad, however, that you were able to find a way to celebrate, Kami.

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