Hiding in the Shadows

Living with an invisible condition can be both frustrating and demoralizing on a regular basis.

"Hiding in the shadows" expresses how it can feel to suffer from restless legs syndrome (RLS). As our symptoms pounce at night, causing missed sleep, our lives turned on their heads. We survive by sleeping during the day and internet surfing during the night.

Public perceptions of invisible conditions

Since the dawn of the technological age, being "different" has become more and more acceptable. Whether it be sexuality, gender, fashion choices, or looks, we rarely distinguish these differences in the 21st century.

Those of us who experience invisible conditions are judged daily as being fake. As a believer in science, the old adage "seeing is believing" rang true with me until I developed multiple invisible illnesses.

Not only have I been diagnosed with restless legs syndrome, but I also have a formal diagnosis of fibromyalgia, Ehlers-Danlos hypermobility, chronic fatigue syndrome, and clinical depression, all of which only make themselves visible when I am experiencing extreme pain.

Facing misunderstandings

Unluckily, being deemed disabled seems to put you in the crosshairs of heinous individuals who consider you fair game as, apparently, our feelings don't matter. You might have notes left on your vehicle when you are parked in disabled bays because – guess what – you don't "look sick."

RLS leaves you sluggish, tired, and irritable (at the very least). When we are made to attend appointments during the day, it can be extremely hard to even stay awake, let alone follow the conversation or answer questions. This can cause severe issues, especially if the said appointment is regarding income.

When you also have to go into work-related meetings, it can be difficult facing individuals who could have researched the medical conditions you suffer from, but instead, choose to have you explain what it is you deal with daily. Even then, they have a knee-jerk reaction that you are lying.

A sense of community

Those who endure invisible illnesses, many of whom are Patient Leaders on Health Union, spend hours, days, weeks, months, and years feeling isolated and lonely within our conditions. The only ones who can understand are those who go through the same things alongside us.

That is why Health Union is so important. Our RLS community helps corral us all into one place where we can pull together, sympathize, agree, disagree, and put the world to rights — all in a soft, padded corner of the internet just designed for those of us who need to beat up our joints to distract from the pain.

Reaching out for support

Do not hesitate to drop me a message, or leave a note on this post. I love to chat with you all about anything and everything. We may be fighting an endless battle with the rest of the planet, but always remember that RLS does not mean you are alone.

Do you struggle with feeling isolated or misunderstood because of an invisible condition like RLS? Our community is here for you. Join or create a discussion topic in our forums here!