Invisible Illness and Emotional Effects

In my first blog I mentioned that Gastroparesis and Menieres are an invisible illness.  I want to first explain what an invisible illness is so as not to confuse those new with the definition.  A invisible illness is an illness that people can't physically see.

I guess it is easier to explain visible illnesses because we all understand those and are willing to take them at face value without question

• A person in a wheelchair rolling along the street.
• A deaf person using sign language to talk to others.
• A blind person walking with a Walking Stick or cane.
• A cancer patient that has lost their hair due to chemo therapy.

We never question if these people's illness is in their mind.  We can see that they are sick and we immediately do one of two things

1. Try to help them even if they don't ask. 
2. Ignore them when they look like they need help. (We don't want to interfere with their independence)

Now let's look deeper at invisible illnesses these are illnesses that people have to take the sick person's word on.

• A person suffering vertigo is spinning in their head.  You have to trust that they are sick because how can you tell someone is spinning.
• A person suffering with fullness after eating one or two bites of food.  First thought that goes through a person's mind is are they trying to loose weight or not gain weight.
• A person that gets sick after eating or drinking.  Are they afraid that they will gain weight.
• A person that has some good days.  Is it depression that is effecting them on what they call their bad days.

See it is easy to see the difference visible illnesses are those that people can connect with an outside physical sign of sickness.  Invisible illnesses can be dismissed because the same signs can be connected with depression or attention getting.

Yet, if you know someone with one of the Invisible illnesses and you truly support them you know the difference.  You know it is not in their head.  You can tell grabbing the wall to keep their balance is realistic.  That not wanting to bend over is truly something that they cant do.

People with invisible chronic illnesses endure something that others don't.  When you have an illness people can see or hear about they don't question how you are doing things.  If you cant do something they immediately accept it.

Those of us with the misunderstood chronic illnesses deal with people doubting how you feel and if you are really sick.  This goes way beyond the general public.  Physicians are so unaware of certain rare illnesses that they don't believe you when you tell them the symptoms.  Insurance companies deny you because they cant accept the fact that you are really ill.

You also become an experimental tool for the medical community. You want so bad to be better to get over how you feel that you will do things most people would never even think of doing.  It is a very shocking experience to go to an emergency room and you have to explain what is wrong and  how the medical staff can help you.

 I will never forget having to go to the ER because I thought my surgical site was infected and it was over the weekend.  The surgeon told me where to go and for them to look at it to make sure that it is not infected.  The physician took one look at the back of my ear and left.  Turns out he had never heard of an Endolymphatic Shunt.  So he wasn't sure what it should look like if it was infected.

I will tell you the fun latter of having a gastric pacemaker and how often I have to explain that.  But this is the stuff that we people will illnesses will do to get better.  Just like a cancer patient or someone that has been burnt we want to get better and Will do what the physician's say.  Sometimes we find out they never heard of what is wrong so they are experimenting on what will make us better.  Then there are times that you are lucky enough to find specialists that understand the illness and they do what they can to make you better because they know what is wrong in the first place.

So to the Emotional Effects are devastating not only to the person that is sick but those that love them. Patients feel like no one believes them.  Their love ones have to watch them endure explaining over and over again about their illness.  Both the patents and their loves one have to endure physicians treating the illness without understanding it.

Here are a few things that can help stop this kind of negativity.

1. Remember that patients don't want have to explain things over and over again.  Look up the illness on the web and enlighten yourself.
2. Patients will have good days but a good day for someone who is sick is not the same as a good day for someone who isn't sick.
3. Patients don't want to be sick.  Who would want to endure with an illness that they will never get over.  
4. Patients would rather not have the attention that comes with being chronically sick.  I know for me I would rather get attention for things that are awesome in my life not about my upcoming procedure or test.
5. Families and friends are not enabling the disease.  Hopefully they are helping to support and highlighting the good things that are going on.
6. Supporters would rather be having fun all the time than having to worry that when they go somewhere how to get the extra equipment to their destination.  Is something bad going to happen and we will have another hospital visit.

Three blogs down.  Now here is the crazy thing it takes me almost all day to do one of these in between dizzy spells and tummy aches.  So hope it is helping explain things from the way I see it.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.