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Invisible Illnesses & Being Misunderstood

The thing I fear most is being misunderstood.


I wonder if my kids feel like I'm letting them down. While there are many days when I can

work through exhaustion, depression, anxiety, or pain, there are other days when I can't. They bound up to me with their flushed cheeks and boundless enthusiasm and ask to go to the park. I'm learning to say "no" when I can feel my body and brain breaking down, but I still feel my heart wrench when I tell them I can't do it. I want to explain how I feel, so they know it isn't because I don't want to. But there's no use- I don't want to burden them with worrying about things they can't understand.


I wonder if my friends think I'm a flake or that I don't care. I think about all of the invitations I've turned down or calls I didn't have the bandwidth to make. I want to tell them how I always want to connect, but simply living a day can mean there's no way I can be "on" enough to be anything other than a drain.


I wonder how my husband isn't mad at me for all the times I fall asleep on him or how he handles the mental slumps I can hide from the kids but don't have the energy to hide from him. I want to explain how much effort goes into making dinner, or how there are days when I don't want to be touched because my very skin feels bruised.


I wonder how I'll be perceived by the public when I say these things. I'm afraid to voice all of this lest my parenting is doubted or people think sharing these struggles means I am miserable all day. I want to explain how I can be in pain or feel low and still be happy with my life; how I show up with intention even though I don't always have the same amount to give.


I say all this because there are those of us with invisible illnesses who are always misunderstood. We apologize for doing our very best, and we minimize how hard it can be to simply exist. It is embarrassing to be transparent because we know how often our feelings are misinterpreted as excuses.


While we may not want to talk about it, I think we have to speak up for the sake of each other. We need to create spaces where we don't have to pretend to be fine all the time. So here is a place to say what you want to say without being judged or misunderstood. Whether you want to comment or not, know that you aren't alone and that so many care about how you feel without even knowing who you are.



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Guest
Apr 12
Rated 5 out of 5 stars.

I'm at the point where I want to give my family, doctors and other people who don't understand my pain and other symptoms for a month just so they can feel what it's like.

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Guest
Aug 05, 2023

I was just bemoaning the frustration of experiencing the patterns of depression that seem to emerge like sudden fatigue, complete lack of confidence to achieve even preparing dinner for myself etc etc. are these patterns ingrained and have life of their own? Are they prompted without my awareness of the source? at the age of 70 I am continuing to take steps forward but there are days like these when I don’t know if I should be angry with myself or what?! I don’t even know what to think or say at the slow progress

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Guest
Jul 08, 2023
Rated 5 out of 5 stars.

Thank you for articulating the complexity of it all ... having to gently manage my invisible illness coupled with my strong desire to do the things well people do.


Every day is full of thousands of considerations and decisions, all based on how I'm doing in that moment. Some days are easier than others!


I choose to constantly remind myself that I'm loved, lovely and loving ... exactly as I am.


Thank you for sharing your experience with us!

Much love 💘 Stephanie

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Guest
Jul 08, 2023
Rated 5 out of 5 stars.

Thank you

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Guest
Jun 22, 2023
Rated 5 out of 5 stars.

Gosh, yes. All of this. And the pain of being accused of "making excuses" because of "character flaws" when it sometimes takes a Herculean effort to just get out of bed because every part of my body is in pain.

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