19 Lessons My Invisible Illnesses Have Taught Me

Living with invisible, chronic illness can often feel like trudging through mud – an endless downward spiral of problems, regrets and maybe a sprinkle or more of resentment, too. I know I have my down days and struggles with fibromyalgia, a stoma, fatigue, pain and migraines. But it’s important to appreciate the good things, to take a while to see what your illness has taught you. I’ve found that I’ve learned a lot, and that my experiences have shaped me in ways that I hadn’t realized – making me the person I am today, for better and for worse. There’s more of the former than we may at first think.

1. We can be our own worst enemies, but also that we can be our own best friends. We can be a champion for ourselves, if only we speak to ourselves with more kindness and treat ourselves with more compassion.

2. There are a lot of ignorant people out there. There’s a lot of ignorance in the world in general, where you’ll often come across prejudice and a lack of understanding and empathy.

3. But there are also a lot of honest, caring, compassionate, wonderful people out there.

4. The online world is a wonderful space for learning, sharing, communicating, giving and receiving support. I have learned I love to blog!

5. It’s OK to admit you need help. It’s OK to admit you’re struggling. It’s OK to look after yourself without feeling guilty. And it’s totally OK to be yourself, unapologetically.

6. It can be hard to be spontaneous, but also hard to plan when you don’t know quite how you’ll feel from one day to the next. Being more flexible and going with the flow is important, but easier said than done.

7. There are many people struggling with invisible illnesses; I am not alone. You are not alone.

8. I can feel as though I’m being judged for looking fine and normal, like there’s nothing wrong with me because I “don’t look sick.” It can make me feel like a fraud. Sometimes it makes me want to scream.

9. Our experiences are uniquely our own and shouldn’t be compared to others. We go at our own pace.

10. There is no one size fits all plan for how to experience illness, pain or healing. There is no guideline or timeframe we must meet for how we should cope or feel emotionally, either.

11.You have to take the good with the bad, the rough with the smooth. There will be some soul crushing moments, perhaps when you least expect them.

12. There is also such joy in the smallest of things. This can take a huge change in perspective to appreciate sometimes. We should take the time more often to see and love these things we so often take for granted, no matter how small.

13. Acceptance can be incredibly hard. I find myself frustrated, devastated, angry and disheartened when I wonder where my 20s have gone, and when I look to the future with worry and uncertainty.

14. Sometimes you just have to go how you’re feeling and trust your body. Look after it, listen to what it’s telling you, and rest when you need to. Our health doesn’t always fit with social norms, ideals and daily schedules.

15. I have greater empathy as a result of my illnesses and greater assertiveness as a result of having to fight my corner at every step of the way. I have a greater understanding of health and life in general.

16. Regardless of how long you’ve had whatever it is your dealing with, it can all be a continual learning curve. Some days will be better than others. Some days you cope, some you don’t, and that’s OK.

17. Looking after yourself isn’t an indulgence or something to feel guilty about. It’s incredibly important.

18. There’s not always a rhyme or reason for why things happen. You may never get an adequate explanation of what’s wrong or what’s caused it. As frustrating as it is, sometimes things simply are.

19. I’ve also learned that I can cope with more than I thought I could, and that despite rough times, we are capable of perseverance. We need to learn that when things get tough, we can get tougher.

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