My next few post will be about the basic of our diseases. I not only hope to reach to spoonies that know what all of this is about, but to people who are new to these unknown disease or just want to learn more.
When I first heard the term fibromyalgia and spondylose I had no clue what they were. I had heard plenty about rheumatoid arthritis and saw what it did. All those curled up fingers and toes. I had seen the effects of spondyloses I just didn’t know that’s what it was. I thought the “hunch back” was just another effect of rheumatoid. It was caused by a type of arthritis which is called spondyloses which is an arthitis of the hips and spinal cord.
Fibromyalgia though what was that? I’ve never heard or seen anything about it in detail. I knew my mom had it because she’s the one who told me to see a specialist. I still didn’t know what it was or what the symptoms were despite knowing the name. My mother has it but she looked and acted fine ( her symptoms are starting to show more, but only if you know her). She works, takes care of my dad who has MS, she helps me with my sons, takes my nephews for a week in summer and so on. She leads a full and active life. Not only being a mom, grand-mother and partner , but as a painter, president of the local art club and so much more. So what does this disease do? Why can’t we see the effects of it? She doesn’t look sick and neither do I.
Aren’t people with illnesses supposed to look sick? We don’t always use canes, or wheelchairs but on occasion we might need too.We don’t look like we’re in pain because it has become our new normal. We don’t look sick, but these illnesses can affect our daily lives just as much as a visible illness can.
What is an Invisible illness?
An invisible illness is a term that en captures a multitude of illnesses. It is used to describe any illnesses that aren’t easily visible. This term doesn’t only include physical ailments, such as fibromyalgia, diabetes, some arthritis, it also includes mental illnesses like depression.
The hard aspects about having an invisible illness is just that, people don’t see us as sick. We struggle everyday to have normal lives, on bad days we stay home so no one sees us being sick. We often get criticized or have a stigma around us because of this. People often think we are lying or are just making the symptoms seem worse.
Often times people with an invisible illness will try not to talk about their disease because of the stigmas attached. “You were fine yesterday/minute ago” or ” You don’t look sick” are often comments we hear. People fail to understand us because we don’t fit the profile of a sick person.
How to bring awarness?
We are often not believed, by loved ones and doctors even. I know someone that thought having fibromyalgia was a bullshit diagnoses until they became ill with it themselves.
Often times people don’t realize that our illness ebbs and flows, that the symptoms can change on a daily basis. We can go days,weeks months without any symptoms. Sometimes our symptoms can hit us at any moment without warning. Some of us can also live with symptoms everyday they have just learned how to cope.
I’ve had days were I had a sudden on set of a migraine and skin sensitivity just because someone walked by me and gave me a hug to hard or squeezed my shoulders. Healthy people expect us to look the part and that is what makes it hard for them to comprehend.
Being candid with people is a great way to bring awareness. Talking about your illness with your friends, family and even your co-workers and others can help bring this awareness.
Compare your illness to someone that has a visible illness or to an illness that people can comprehend more. For example, you wouldn’t expect someone in a wheelchair to be able to reach a high shelf or climb a ladder because you can see they cannot. Therefore, just because you cannot see the illness which causes sudden bouts of dizziness that enables the person with the illness to do those things either ,as it poses a danger to them.
You can also point them to things around you that you do not see. For example, you cannot see the wind yet you can feel it, we all breathe oxygen, we’re all held to the ground because of gravity. All these things we do not see, yes some of these we feel but others we don’t.
Don’t get mad when people say things like ” but you don’t look sick” or ” have you tried ( insert treatment options)? “. I know many who do this, hell I did this before I was diagnosed with my illnesses. People don’t say this to be ignorant or rude, they do it because they aren’t aware of invisible illnesses. They are truly surprised that you are sick and want to give genuine advice. It is frustrating to hear I get it. Bring awareness to them by talking to them about your illness so they can understand. Some people will never believe you or understand and with them just walk away. One of my post will touch base on what not to say to someone with an invisible illness.
I hope this post will help you understand what an invisible illness and to realize that we are surrounded by people that are affected by them.
Until next time spoonies.
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