Thursday, January 23, 2014

What does sick look like?

There is a lot of discussion regarding people who are chronically ill "looking" sick.  People who aren't sick tell us that we don't look sick all the time.  I hear from people with POTS/dysautonomia, mitochondrial disease, and others who're disabled from different medical problems that they have heard that statement.  We get looks when parking in handicapped parking.  We have problems getting disability.  We have difficulty getting support from family and friends.

That leads me to one question...

What, exactly, does sick look like? 

This is my favorite
Does someone with diabetes look sick?  They have a lot to deal with everyday.  If they don't take their insulin at the right time, eat the right foods, take too much insulin, take too little insulin, exercise too much, etc. they can wind up in the hospital.  But by looking at someone with diabetes, can you tell?  They may have an insulin pump or scars from all of the needle sticks but you can't see those things if they're dressed.  Are they sick?

Does someone with congestive heart failure (CHF) look sick?  They get short of breath with activity and can have swelling in their legs and feet. They could go into the hospital at any minute. But by looking at someone with CHF, can you tell?  While clothed you can't see the swelling and you can't "see" shortness of breath.  Are they sick?

What about Multiple Sclerosis?  People with MS can have a wide array of symptoms, many of which occur in mito as well.  They, many times, have to use a wheelchair to get around.  But, without the wheelchair (or even with the w/c), can you tell?  Can you see the pain, numbness, and tingling?  Can you see the bowel and bladder problems?  The muscle weakness?  Are they sick?

And how about Mitochondrial Disease?  People with mito have a wide array of symptoms, just like those with MS.  We have extreme fatigue, muscle weakness and pain (many times severe), slow or no GI motility (movement), problems with vision or hearing, failure of the autonomic nervous system (which causes a wide array of symptoms itself), and many more.  Many of us have to use a wheelchair to get around, at least if we want to get very far we do. (I'm included in that group.)

...and a lot of alcohol and some acting
classes and I'll be sick for the next
2 days.
Due to my illness I have a port a cath for IV fluids and an intrathecal pain pump implanted in my back, both of which stick out and are visible when I don't have a shirt on. I have a scar of my leg from the muscle biopsy, two large ones on my back from the pain pump, and a small one above the port.  I also use a wheelchair to get around. In addition to all of that, many people with mito have a G/J tube (feeding tube).  Aside from the wheelchair, none of those things can be seen with my clothes on.  Anyone with Mitochondrial Disease could get ill and be in the hospital any minute.  But by looking at someone with mito, can you tell?  (Evidently not since I've been told many times that I don't look sick, despite using a wheelchair.)  Are we sick?

So, if none of the people with diseases mentioned above look sick, what exactly does sick look like?  If you're sick does that mean you always look pale?  Do you have to be missing your hair?  Do your eyes have to be sunken in with dark circles underneath?  Do you have to be emaciated?  Do sick people have to frown and look miserable ALL the time?  Do you have to be so sick that you can't get out of bed 100% of the time?

I've felt this way before.
If the answers to those questions are all "yes", then that means that you're only sick if you are actively dying or going through severe chemo and radiation due to stage 4 cancer.  If neither of those are true, then you must not be sick because you don't look that way.

Everyone needs to learn that it is almost insulting to say "You don't look sick" to someone who is sick and feels sick every day of the week.

And in case you need a reminder of the other things not to say to someone with a chronic illness...

You'd be surprised how many times I've heard these statements or something similar.

Sorry for all the pictures... I just couldn't choose.  :-)

Friday, January 17, 2014

I'm back... kind of.

Well, after a LOT of thought and consideration, I have decided to start posting on my blog again.  However, things are going to change a little, as I have changed... a lot.  Many of my posts were there to update people (friends and family) of my condition.  However, as I have learned that people's love is, many times, conditional and sometimes faked, I will no longer be posting to update anyone on my current condition.  The people who really care, will find out because they live with me or talk to me regularly.  They can just ask me in person.  Now, there will, of course, be discussion about how I'm feeling or the ways this disease is affecting me.  That's what this blog is all about.  However, I will not post for the sole purpose of updating people.

On the other hand, many of my posts have been written and posted for the purpose of educating others about Mitochondrial Disease, dysautonomia/POTS, and the ways those diseases affect me.  That is the reason why I'm going to blog again.  I have had quite a few people email me or comment on my blog saying that it has helped them over the last couple of years.  The other day I came across one of my blog posts on Pinterest. (and no, it wasn't someone I know)  I think that's what made me finally decide to start posting again, after going back and forth about it for the past month.  I am not going to let a few former family members words keep me from helping others.

Unfortunately, I've had to make another change.  Awhile back I changed my comments settings so that I moderated them before they could be posted.  However, I've learned that that's not enough.  A former family member was using the anonymity of the internet to say unsupportive and hurtful things to me.  So, because of that person, I have had to disable the ability to post anonymously.  Because she is too cowardly to say those things to my face or even just using her name on the internet, I believe that those comments will stop if I disable the anonymous posting.  I cannot and will not deal with someone being unsupportive and hurtful.  So, I am sorry that everyone else has to deal with signing up for a service they might not want to sign up for since I'm not allowing anonymous posting.  It's another case of one person ruining it for everyone else.

So, welcome, or welcome back.  I hope everyone's having a good, spoon-filled day.  If not, I understand and I hope you have a good day soon.