Living with Invisible Illness: My Journey and How to Support Loved Ones

Invisible illness really is one of those things that fly under the radar unless you are personally affected by it. Today, I want to open up about something deeply personal – my journey with chronic illness. Living with Lyme disease and Hashimoto’s, both autoimmune diseases, has been a challenging and often invisible battle. Let’s dive into what it’s like living with these conditions and how we can support those who silently struggle.

invisible illness
This photo was taken at the peak of my illness, I was so sick, my hair had fallen out and I was sleeping 18hrs a day. Still ‘smiling’ on the outside and looking normal.

My Journey with Invisible Illness:

One of the things I’ve never really shared is my journey with being chronically ill. For those who don’t know, I have Lyme disease and Hashimoto’s, which are both autoimmune diseases without a ‘cure’. These illnesses are often invisible, meaning you can look perfectly fine while suffering immensely on the inside. I could look like I’m functioning normally, but I’m often in pain, dealing with brain fog, muscle aches, joint pain, and extreme fatigue.

I’ve become quite adept at masking my symptoms, even from loved ones, because it’s often easier than explaining my condition repeatedly. The reality is, unless someone takes the time to educate themselves, they won’t understand the daily struggles. Every day is a challenge for me, with brain fog being a particularly difficult symptom. I’ve forgotten the names of close friends and struggled to remember simple tasks. Some days, I can’t even get out of bed, and the guilt of not being productive can be overwhelming.

living with invisible illness

My internal conflict is constant, especially as a single mother, balancing work, parenting and everyday life. The guilt of not being able to function as I once did is intense. I’ve spent my life savings searching for treatments to help me function at even 50% of my former self. Relationships and friendships have suffered as I’ve often had to cancel plans last minute due to my inability to function. It’s exhausting, but I share this in the hope that it might resonate with others in similar situations and help those who don’t understand chronic illness.

Advocating for Yourself:

One of the biggest lessons I’ve learned is the importance of advocating for myself. When I first started dealing with my illnesses, I found that doctors often didn’t provide much information beyond prescribing a ton of medication. Some of it was helpful, but a lot of it wasn’t. I realised that I had to educate myself about my conditions. Understanding the ins and outs of what I was dealing with empowered me to seek out the best treatments and alternative methods for pain relief. It’s a lot of work, but knowing your illness inside and out is crucial. It’s your body, and you deserve to know everything about what’s happening to it.

invisible illness
Biohacking with things like cold plunges was one of the tools I utilised to help my body heal

Tips for Dealing with Invisible Illness:

  1. Educate Yourself: Learn about your condition and potential treatments. Knowledge is power.
  2. Prioritise Self-Care: Listen to your body and give it the rest it needs. Don’t push yourself too hard.
  3. Find Support: Connect with others who understand what you’re going through, whether through support groups or online communities.
  4. Communicate: Be open with your loved ones about your struggles. They can’t support you if they don’t know what you’re dealing with.
  5. Set Boundaries: Don’t be afraid to say no to activities that you know will overextend you.
invisible illness

Tips for Supporting Someone with an Invisible Illness:

  1. Be Patient and Understanding: Recognise that just because someone looks fine doesn’t mean they aren’t struggling.
  2. Listen: Sometimes the best support is simply being there to listen without offering unsolicited advice.
  3. Educate Yourself: Learn about their condition so you can better understand what they’re going through.
  4. Offer Help: Small gestures like running errands or helping with chores can make a big difference.
  5. Be Flexible: Understand that plans might need to change last minute due to their health.
self love

Conclusion:

Living with an invisible illness is a daily battle, but sharing our stories and supporting each other can make a world of difference. If you’re struggling, know that you’re not alone. And if you know someone with a chronic illness, your support and understanding can mean everything.

Do leave me a comment below and let me know if you or a loved one have dealt with an invisible illness, let’s continue this conversation. Until next time my friends, Love the Life you’re living! Xoxo

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Amanda Millie
Amanda Millie

I’m dedicated to wellness, constantly striving to be my best self while inspiring others to do the same. Embracing my journey, flaws and all, I’m committed to biohacking for a healthier, longer life—so I can be a present mama for my kids and inspire others to authentically live their best lives too. 💫

Find me on: Web | Twitter | Instagram | Facebook

10 Comments

  1. Samu Baxter
    July 1, 2024 / 5:13 pm

    You are brave to talk and educate others about the invisible illness I believe a lot of us go undiagnosed and experience these symptoms especially the brain fog. Love you for this 💓

    • July 1, 2024 / 6:12 pm

      Thank you Samu, the brain fog is especially frustrating.

  2. Sharmaine
    July 1, 2024 / 6:27 pm

    Thank you so much for letting us in to a part of your life. Very informative well done and all the best!!!

    • July 4, 2024 / 7:51 pm

      Thank you for the kind words xoxo

  3. Cleo Costa
    July 1, 2024 / 11:12 pm

    Your story inspires me as I have some of these symptoms. Educating yourself about your illness I think is the key point as you mentioned here. Well done for your bravery to share your story 👏🏾😀

    • July 4, 2024 / 7:50 pm

      Thank you hun, Education is so important especially when it comes to our health.

  4. Mamen
    July 2, 2024 / 12:26 am

    Opening up is difficult, but you are such an inspiration!
    Nobody knows what others are dealing with behind a smile or a picture of normality. I wish more people opened up and realised it’s all around us.

    • July 4, 2024 / 7:44 pm

      That is so true, we never really know what is happening with other people. Thank you hun xoxo

  5. Ericah
    July 2, 2024 / 12:06 pm

    Thank you for sharing. You are a brave beautiful lady. A few have the courage to speak about things like this openly. This is inspirational. Proud of you. Best wishes xxx

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