“Why don’t you find another way to get out of bed?”

I said it is difficult for me to get out of bed. Some mornings I have to “work” my joints into moving.

…

I do not even know how to respond to this comment. It is very specific but I know this person meant everything, in general.

Sometimes I cannot just throw my legs over the edge, sit up then stand.

Please, anyone out there, if you have another way of getting out of bed please tell me.

Maybe I could roll off the bed onto the floor. Theoretically I get out of bed. Then what? If I cannot rise from bed how in the world am I supposed to get off the floor?!

Not to mention, the roll would be difficult on my elbows.

This is the most absurd comment I have ever heard in response to my musings about RA.

I wake up with swelling in the mornings. Some mornings more than others.

If I cannot get out of bed I cannot get out of bed. End of story. There is no “other way”.

I face obstacles like this every day. Barriers that I cannot get around. These are not something I can overcome. They are boundaries.

Do not get me wrong. I have found many creative and interesting ways to get around these limitations but some things I cannot help.

For example:

• Using silverware
• Writing
• Brushing my teeth

Looking at the list I realize for everything except for writing I have actually found ways to get around the conventional use.

Regardless.

This is the new reality.

Part Two contains my personal reaction.

Hi, my name is Monica and I have RA.

“…but you don’t look sick!”

I struggle with my physical limitations but I also struggle with the new and unfamiliar mental strain.

The thoughtlessness behind this comment always reminds me of the demons lurking at the back of my mind:

How much does the disease actually affect me?

vs.

How much does stress or over-though affect me?

(These ideas will come up again in another series)

I am battling an invisible illness. Everyone bases their opinions, ideas, and plans of action on how I feel.

Maybe I cannot brush my teeth or pick up my pets because I am more stressed. After all, the mind is a very powerful tool.

But it is not powerful enough to create an entire disease, right?

An over-active imagination cannot allow my immune system to destroy the cartilage around my joints, right?

…Right?

And when people say this and suspend belief at their convenience, I realize no one sees what I am going through.

I feel alone.

I feel like a hypochondriac.

Part One conveys why this comment is not ok to say.

Part Three contains the silver lining.

Hi, my name is Monica and I have RA.

“But you don’t look sick!”

 

Thank you?

I am glad I am not a walking billboard for the disease.  I am relieved there is no huge neon sign above my head flashing “PERSON WITH RHEUMATOID ARTHRITIS RIGHT HERE!”

I know people mean this as a compliment. Unfortunately, this comment bothers me the most.

It alludes to the fact people may not believe I am truly ill. The misconception remains that most illnesses have outward symptoms.

That is not the case with RA.

Rheumatoid arthritis is a silent illness. It is an inflammatory disease that affects the cartilage around the joints. It also affects other organs and systems in the body. Generally, there are no visible signs of the disease.

So, people with RA do not look ill.

In the beginning people are concerned, after all, they know it is a disease and it is chronic. That much they understand. As time passes, the people who were most concerned are also the people who get the most annoyed.

They think:

‘She is probably fine’

‘She is making excuses’

‘It’s all in her mind’

‘It’s probably just stress’

This one thought, that is meant to sound supportive, is the gate-way to more misguided ideas of what it is like to have this disease.

It allows people to suspend belief when most convenient. They choose not to care when it suits them. They are able to place blame on the sick person because they do not understand the nature of the disease.

Part Two explains my personal feelings on this comment.

Part Three contains “the silver lining”.

Hi, my name is Monica and I have RA.