What you can’t see………


What you can’t see is how heavy this fatigue is.

What you can’t see is my muscles feeling ache.

What you can’t see is my joints feeling like a vice grip on them.

What you can’t see is the tingly feeling from the nerve pain.

What you can’t see is I am gritting my teeth and probably making my TMJ worse to get through this activity.

What you can’t see is how hurt I am by being called lazy or a fraud or that I am just trying to work the system.

There is alot that you can’t see behind my smile. Oh sure I have one or two close friends that know. The doctors who need to see it, can’t, or choose not to.

What you don’t see is the pain from the full force run into Mommy hug. What you do see is a smile and a mothers hug and kiss.

What you don’t see in the parent who pulled their hair up put on jeans and tshirt had to sit for twenty minutes just to recover from that activity.

What you don’t see is that after attending the school event this parent had no choice but stick a movie on and lay on the couch trying to recover. But would not have missed it for anything.

What you don’t see is the guilt of putting a movie on because that parent had to put that movie on.

What you don’t see is that in order to pull off a full day event its at least a day of rest before and plan to be in immense pain and have what we call a flare for at least a few days afterwards. For our kids its all worth it. We know our limits and we go over them for our kids knowing it will cause more pain.

Chronic Fatigue Syndrome is a disorder that causes extreme fatigue. Its not just tired. Its fatigue so bad that it often takes 24 hours or more to recover from a simple ten minute activity.

Fibromyalgia is a syndrome as opposed to a disease. However that does not make it less complex. It is classified as a chronic pain condition. Symptoms vary from muscle soreness, abnormal pain response, fatigue and sleep disturbances.

Lupus is an autoimmune disorder that makes the immune system super active and it then ends up attacking its own organs. It often has inflamation joint damage, and swelling.

There are many other disorders, syndromes and diseases that you can’t see what they are doing.

You can’t see muscles hurt. You can’t feel the tight pain from inflamation.

These are invisible illnesses on the outside. So we are often told its all in our head. Its no wonder with being told that , that scientist and doctors are starting to add psychological changes to the symptoms.

Most of our society says if you can’t see anything wrong then nothing is wrong.

However living with even one of these we know we are broken inside. Often people have two or more of theses illnesses.

What you can’t see when you call me lazy for not getting up to do something is the bone pain in my shins. That as long as I am sitting with my legs propped I am good. I stand up and it starts hurting.

What you can’t see is why I just spent all day in bed not sleeping but resting and am now sleeping. You can’t see the fatigue that had hit me so hard I couldn’t even hold a book without my muscles trembling.

What you can’t see first thing in the morning is how hard it is for me to get out of bed. Having a bottle of water and my morning pills beside my bed is not being lazy. I need to take them at least thirty minutes before getting out of bed so I can move.

Next time you see someone you think is being lazy or is short tempered or is always finding somewhere to sit. Perhaps sit and talk with them. Find out what is going on. Most of us wont tell you about this. But just your interest means alot. Asking what you can do to help is such a soothing balm to people who deal with chronic pain and illness. Sometimes just knowing that a friend didn’t know much about one of my issues but took the time to research it a bit is so soothing.

We don’t want pity we want understanding. We don’t want someone to take over for us. We want help. We don’t want to be told we are always complaining. Perhaps the complaining is a type of motivation for us. Verbalizing what is going on lets us push back. We don’t want to be your charity case. We just want you to sometimes think about what we have gone through to get to an event.

When we say its an invisible illness there is a reason for it. Its not like a broken bone or some such thing that you can instantly see and know it must hurt. It doesn’t mean we have no empathy for others with issues. In all actuality we probably understand more and in a way that others wouldn’t .

Many of us were and still to some extent type A people we are doers. We are movers. We are high energy people. Having  a body holding us back just makes it more of a frustration.

If you want to help us. Don’t ask what can I do? We will most likely say nothing..We are not comfortable. Instead perhaps ask can I bring you guys some dinner so you don’t have to cook when you get home. Can I come by and take the kid/s to a park so you can rest after this?  These are the types of offers I typically respond best too.

What you can’t always see is how strong we are.

What you can’t always see is how determined we are to thrive. Maybe not every day but most days.

What you can’t always see is the courage we greet each day with knowing what is in store for us.


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