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How I Hide the Full Effect of Fibromyalgia

How does a person reconcile opposing versions of who they are?

For me (and I suspect, many of you reading this) those two versions are “inside me” and “outside me.”

For the rest of you, I’ll tell you a secret: There are two of me.

I don’t mean that I’m a twin. Although, I actually am a twin, but that could confuse things, so I’ll get back to talking about my secret fibromyalgia identity.

I have an “inner me” that only a few very close loved ones have ever seen, and I have the “outer me” that I share with the world every day. Kind of like a Jekyll and Hyde thing, but I’m usually not as scary.

An example of the two versions of me existing simultaneously is when someone (other than maybe my husband) asks how I am and I say, “I’m fine, thanks.” That’s outside me covering for inside me and hiding the full effects of my fibromyalgia.

I’ll let you into another secret – I’m not fine. Not at all. Not by a long shot. Nope. No way. Not fine.

I’m hurting physically and emotionally with no end to it in sight.

The outside me tricks people into thinking I’m coping well, but inside me feels lost, alone, scared, in extreme pain, and exhausted from fatigue.

Outside me can take care of myself and is independent.

Inside me is often dependent on others for day to day tasks.

Outside me wants to do all the fun, active things that you do.

Inside me knows I will never be able to manage all the stuff that my peers can do and I’ll struggles for days after if I even try.‎

Outside me is confident and happy.

Inside me feels vulnerable, afraid and emotionally as well as physically hurt.

You’d be forgiven for assuming that outside me is the deceptive in-disguise-villain in the twisted fairytale that is my life. You’d be forgiven, but wrong.

Outside me can actually be useful when I need an extra push of encouragement to get through a social gathering or another medical appointment.

In the meantime, inside me has already forgotten how to say actual words because it’s so self-conscious and dreading having to communicate with other human people.

So, just like the outside me is protective, bold and empowered, the inside me is often insecure and struggling.

Why am I telling you all of this? Because I want you to know that smiling doesn’t always mean pain-free, independent and capable. Behind the exterior, there is unimaginable pain that is present every second of the day and night. Plus, we have to work really hard at keeping up the outside me at the same time as dealing with all that inside me brings.‎

Real me is probably a combination of both identities and I think I actually need the inside and outside versions of me to exist, despite them being so at odds. Inside me needs outside me sometimes to take over when things get too hard. Other times, outside me needs inside me to take over and acknowledge the pain and struggles.

So, how can someone with a chronic illness not feel guilty or burdensome to those around them once they realize that they aren’t exactly the same on the outside as they are on the inside?

The answer is, they can’t. Sorry to disappoint. It’s all part and parcel of the daily adventures of fibromyalgia to experience these feelings, and to struggle with identity and finding our place in the world as a result.

Reality check time!

Everyone struggles with finding their place in the world and discovering who they really are.

Who am I?

Why am I here?

Where do I fit in?

What am I meant to do with my life?

Which “Star Wars” movie do I like best?

You get the idea, I’m sure.

So, keeping in mind that these feelings are not exclusive to the chronically ill among us, we might find that other people understand this type of insecurity more than we expect them to.

Remember when we started this little journey of discovering how to deal with our fibro-related conflicts? Well, I think I have an answer to the question of how we reconcile our idea of self with our actual self…We don’t!

Instead, we accept that it’s good to be independent and to have dreams and plans, even if we have to adapt them to accommodate our chronically ill selves. Similarly, it’s perfectly reasonable to need help and support even if we’re as stubborn as anyone who ever lived. Which I am (allegedly).

Inside me and outside me will just have to work on their relationship for now until they have a better mutual understanding of how to collaborate. After all, they’re stuck with each other! At least for now.

Photo by xandtor on Unsplash