Thursday, November 29, 2012

A Note to the family, friends, and caretakers of people with chronic, debilitating diseases

It's so difficult to be in the position I'm in; to live the life I lead.  People do not understand.  The only people who can even come close to understanding are those who are going through the same thing I am.  Sometimes it makes me just want to escape, to become a hermit or recluse.  It can be VERY frustrating dealing with people.

I'm sure I'm not alone in these feelings.  This is something everyone with with chronic illness deals with.  Because of that, I want the caretakers of those people to understand a few things...

Some people get upset about stupid petty shit.  I worry that I will not be around to see my two beautiful girls walk down the isle at their wedding while others are getting worked up about little things that if they really thought about it, would have no reason to be upset in the first place.

None of us know how short our lives really are.  Some of us have to worry about it more than others.  Some of us should realize that others have to worry about it more than others.

There are people out there who wait until someone is on their death bed and/or dead before they make themselves a part of their life.  It's a little too late by then.  For some people I think they just don't realize it until it's too late.  But for many/most they are only there at that point in time for appearances.  They probably don't even realize they're doing it, but they're just putting on a show for others, to make sure they appear thoughtful and caring.
Be there for the person when they're alive!  Be there for your family and friends when they need you... when they're alive!  They don't need you at their funeral.  They're dead!!!  It's too late by then.  Don't try to be a martyr when your friends and family are dying.  They need you LONG before that.

To the family and friends of those with mito or other illnesses - We're not faking it.  We aren't doing it for attention.  We are sick.  We hate being sick.  It's miserable.  If we say we're not feeling well, we're not feeling well.  We don't want to deal with other crap.    We need help... especially if we have kids that we have to take care of when we aren't even able to take care of ourselves.  There are many days in which mito patients are unable to take care of themselves.  Be there for them.  Offer to bring them a meal, take care of their kids, or just sit with them while they continuously vomit or writhe in pain... and not because they'll do something for you in return, or because they'll owe you one.

We don't want to take care of other people while we're sick.  However, most of us still really care and want to help others when we're able.  We feel guilty that we can't, but that doesn't magically make us well enough to do so.  Give us a chance, but don't get mad when we can't help.  There are things that we can help with and things that we can't.  In my case, if I can help, I'd love to.  If I can't, please don't get mad.  I have to be careful that doing something to help others would not make me more sick (i.e. something that is too physical, would increase my pain, or disrupt my sleep).  If that is being selfish, then so be it.  I think I can speak for all of us with mito or another similar illness in that we would love to be able to pay people back for what they do to help us, but sometimes we just can't, and it hurts when we're expected to.  Can't people just help us because we're their family or friend and not because they'll get something in return?

On the other hand, please keep in mind, we may be sick but we're not completely useless and incompetent.  We may have brain fog but we're not stupid.  In my case, I haven't forgotten everything I learned in nursing school.  I was a good ER nurse.  I was well educated.  I may have trouble getting the right words to come out of my mouth but they're still in my brain.  I love to be able to help others with medical questions because of my training, if you just give me a chance.

People who've had their lives completely turned upside down and inside out by mito (or another debilitating disease) struggle with their self worth.  Who wouldn't in our position?  We can't work and help support ourselves and our families.  We can't take care of our kids.  Hell, we can barely take care of ourselves.  Don't make it worse by treating us like we're completely worthless or an idiot.  Give us a chance!

And just because I can...

More than anything, what we need is support.  Support can come in many different forms.  If you can't, or don't want to help with laundry, chores, taking care of the kids, errands, or holding our hair back when we vomit, then be there as a distraction, as a shoulder to cry on, as a friend to laugh with.  Sometimes all we need is some company.  Someone to talk to us when we're sick, or down. You know, whoever said "Laughter is the best medicine," was not wrong.  So come over and make us laugh/smile.  Just be there.  Sometimes that's all it takes... to just be there.

So, family, friends, and/or caretakers of people who're living with a debilitating disease, are you confused yet?  Let me spell it out for you...

Be there for your family member and/or friend who has a debilitating disease BEFORE it's too late.

Don't get mad at them for stupid little shit when they're worrying about how to stay healthy this week, how to pay for their necessary medications (mortgage, electric bill, etc.), or whether or not they'll live to see another Christmas.

Help us when we need help... but without expecting something in return.

Let us help others when we're able, but don't get upset when we aren't.

Don't treat us like we're useless and incompetent.  Make us feel as though we still have a reason to be here, like we're still a valuable member of society.

Last, but not least, support us!  Be there for us!  Give us a shoulder to cry on and, even more importantly, a person to laugh with.  It is, after all, the best medicine.

I also want to share an article from  It is titled "36 easy things that you can do to make the life of your chronically ill friend a bit better."  The most important thing to take note of is when the author, Christine Miserandino, discusses her friend who had the flu and received flowers.  She states, "...Since I am sick all of the time - I get nothing.  Am I any less sick, sad, frustrated, lonely or bored?  NO... I need your love and support now more than ever."  I couldn't have said it better myself.

Since I know you have now put a lot of thought into what I wrote above about being a family member, friend, or caretaker of someone ill, I'm sure you will also take the time to read and think about all 36 of the things Christine suggests that caretakers do as well.
36 easy things that you can do to make the life of your chronically ill friend a bit better

Please be sure to read the next blog post as well.  I am posting a poem in a post all it's own because it deserves the recognition that it might not get if it was in the context of another one of my posts.

1 comment:

Anonymous said...

Hi There,
Wow it sounds like you go through allot I am twenty and I have a Mito disease that affects my liver I do have to say thanks for bringing awarness and also giving me a sense of hope you see one day I hope and dream of getting married and having kids your story has helped me Thank you I know living with mito is not easy the stress and financial worry's day to day but then we are all special and I would not change the course Of my disease watching people whom have my disease its hard because they pass away most youth don't even reach to my age but now reading and finding your blog you inspired me and gave me hope so all that's left to say is Thank-you may life be kind to you!!!