What does it mean to *you* to have a chronic health condition/illness?

[ncrainbowgrrl]

I"ve been doing lots of thinking lately. I bought a book called "The Lonely Patient" which describes the world of illness quite well...

I realized that I've been repressing lots of thoughts that I had since the car accident in October of this year- and the struggles with migraine disorder for the 6 months before it. And then there's the clinical double depression that I will never walk away from.

There are so many emotions, thoughts, surprises, reajustments, etc. that come with a diagnosis. And even more that come with seeking a diagnosis for what you know is a real health condition, although it's an invisible illness.


I thought I'd start this thread off with just an open question... and then come back later and answer my own question as it pertains to my life. I thought that this might be a good discussion for all of us to have... for while we may not have the same condition, we all deal with the healthcare world more than we'd like, are aware of insurance/financial issues surrounding chronic medical problems, and have the experience of having to deal with something that makes us "different" than those without a chronic condition.


So... what does it mean for you?

[Cobalt Violet]

1. It 's hard to make plans for a very uncertain future.

Everything depends on other things that depend on other things, that depend on other things and on an on. Sometimes it gets to feel overwhelming. I'm not sure if this makes any sense or answers the question.

It's just what I could think of right now. But of course there are other things. I feel the need to hide both of my main illnesses because of the stigma and people are so ignorant.

[WestHoustonDem]

2. I'm in remission now, so it's a little different for me, but

I could have a flare with no notice, so it means I never travel without boatloads of medications. It also means that sometimes I just kind of check out of my social life for a couple of weeks for no apparent reason. Luckily, I have good friends and family who understand.

[mopinko]

3. it has shaped my life to have an invisible illness.

i sort of have to bite my tongue to not say that it has ruined it. but without my beloved hubby, i can easily imagine that i might have ended up eating out of garbage cans.
having an invisible illness (fibro) has impacted everything i ever did.

one of my earliest memories is of being in my pediatrician's office, having once again missed school because of a stomach ache. i had many visits to dr ball, who was the first of many docs to shrug his shoulders and shake his head. i especially remember that most of these visits included a rectal exam. fun for a 10 year old.
i understand now what it is like to have a kid not want to go to school. then i just knew that mom was annoyed, and i really didn't want to add to her troubles. but, apparently, i was a bad kid.
dr ball, like the 2 dozen or so docs followed him, had no idea what was wrong. he had an excuse. fibro was not accepted as a disease by the ama till '87. the last bunch have no such excuse, especially my pcp of 7 years,(and friend, i thought) who said, when i figured out what was wrong with me- "you know, i didn't used to believe in that. but my uncle has it, and..." yeah, thanks, just sit back and watch my family very nearly fall apart.
i finally got a proper dx, and proper treatment about 2 years ago. i have gotten better and better. but with answers come more questions, it seems. like, wtf was wrong with some of these docs? and, since i have always had it, will i always have to battle it? is there still a chance for me to have "a life" at 52? or will the carpet always get pulled out from under me?

it is odd how having questions answered seems to always cause a cascade. like- i had a bad flare when the weather got cold in december. i suspected that the cold was the trigger. when the doc confirmed it, i had a short burst of self satisfaction. but that was followed by- well, now i feel like i have to stay out of the cold. not just, geez, i hate the cold. but, the cold is a danger. the cold is an enemy. not just annoyed, but afraid. and i hate that.
and just who am i? am i that "underachiever" that i accuse myself of being? it is so hard to make a plan for yourself, and your life, when you know it could all fall apart so easily. so, should i notch up my belt and soldier on? or should i accept my limitation, and set my sights on the possible? should i get some better longjohns, and fuck the cold? or should i try to arrange to stay in when it is cold, and give myself a break?

but then again, if i had not been sick, i would never have found du, would not know everything i know about what is wrong with my country, and would never have added my voice to the chorus of those who want this crap stopped.
you never can really say where you would have ended up if you had taken that other road. did you know that fred rogers and maurice sendak both ended up where they did because they had been sick as children?

but really, above all, i can say, IT SUCKS TO BE SICK!!!! it is a half life sometimes. folks who have always been healthy have no idea.

[Warpy]

4. Me? It's meant I haven't had access to health care

because I've been deemed "uninsurable" for the past 20 years. The irony is that I've spent all but the last 3 of those years working as an RN.

It's meant that I've had to work per diem instead of being on regular staff, which has further compromised my income (per diems are canceled on 5 minute's notice with no compensation).

It's meant that my choice has been to pay to fatten insurance executives at the only plan that would accept me at all at a cost far exceeding my monthly mortgage payment and get preventive care, or to do without and keep a roof over my head.

Then there is what my multiple health problems have done to me, injury to insult.

I have no doubt that my life has been considerably shortened by the incredibly cruel way this country treats its people.

And that is what a chronic illness means to me.

[Justitia]

5. As the primary caretaker of my chronically ill son....

In the immediate, it meant coming to grips w/the fact that I will most likely outlive my child.

I also came to the realization that you never know what is really going on in other people's lives. You go to work everyday, greet your neighbors, you never have any real idea what they are suffering through or what they must go through just to live every day. I never make judgments about anyone's physical appearance, what they "should" be able to cope with, their attitudes or behaviors, etc.

My dad has a terrible habit of judging large people on their weight. Then he saw his thin grandson literally mushroom overnight due to prednisone, he could only walk w/a cane - & he's 23. I pointed this out to my dad: "Dad, you would have seen my son and said, look at that young guy, he's made himself so fat he can't walk w/out a cane, do you feel differently now?" And he does.

And of course, how EVERYONE is a single catastrophic illness away from destitution, I don't care how much money you have in the bank. My son's first month in the hospital cost $100,000. His care costs between $6 - 9,000 per month (he's on dialysis). To say that adds some stress is quite an understatement. Who could have seen that coming in the life of a vibrant 23 yr old young man?

I have always been a compassionate person, but I have become an incredibly grateful AND compassionate person. So many people have helped us, from the medical professionals to the social workers to the folks at Soc Security & Medicaid, to the hospital administrators to our pharmacists and even the maintenance workers in our building. I am so, so grateful to all of them, even the little things they do for us mean so very much.

[Nite Owl]

6. 'The Lonely Patient'

That is such a good decription of living with a chronic illness. I've been living with rheumatoid arthritis and fibromyalgia for most of my life. I don't remember not being in pain anymore. You adapt, you realize that there are things you can do and things you will never be able to do. Throughout the decades of having these illnesses the pain is there in waves, sometimes I think I must be nearly 'normal' sometimes it's all too bad to move. It's hard not knowing when or for how long it will last. The doctors offer little but drugs but most of them leave me too foggy and I'm going to have my thought processes taken away too so as long as I can take my mega doses of Motrin at least the edge of the pain is taken off. The emotions involved are real, there is still a lot of anger sometimes at the limitations of what you want to do and find your body will not cooperate, anger too at people who look at you and see a person looking perfectly well and not being able to understand the pain. Life is just harder for those with a chronic illness, everything you do seems to take so much more energy.

I am fortunate that I can work from home, I couldn't hold down a job where I had to drive a distance or stand a lot. I am fortunate that I have insurance and can afford it. I am fortunate to have two wonderful kids. No matter how bad the pain there is always something to be thankful for too and always someone who needs help more than I do.

[TZ]

7. Its difficult for those without a chronic condition to understand

what its like sometimes. I have developed a uncurable by easily controllable blood disorder. Its generally not lifethreatening as long as doctors keep tabs on my blood counts. However sometimes it makes me feel very ill but its not readily apparant to others. When I first diagnosed even people that knew i had a condition believed a was a hypochondriac because I kept complaining but looked perfectly normal. Its gotten better since then but its still a difficult issue with me from time to time.

[nashville_brook]

8. it means a smaller world

it means walking on eggshells trying to stay well. i have to sleep a LOT and sleep regularly. i have to avoid all kinds of stress. i have to take my medicine, monitor my medicine and be responsible for updating my status with my doc when the medicine stops working so well.

today it means waiting for the next wave of nausea.

it means i won't be burning up the world like i intended to.

it means that happiness is going to have to come to me, because i can't go to it. it means recognizing beauty and happiness in simple things (which is actually pretty swell).

it means having to decide what i can and can't do. it means having almost no money, very little hope for long-term, steady work and no security.

it means having to have a big heart to deal with people -- from friends and family to doctors and nurses -- who aren't going to "get it."

it means having to do most of what normal people do -- but doing it in pain.

it means people are already sick of hearing about your damn pain.

it means having a target on your back: "i'm vulnerable." it means that bad people will come out of the woodwork to fuck with you, but it also means that some good people might also come forward and offer support.

it means living in the moment, because that the best i can do.

[ncrainbowgrrl]

9. To me:

It means that if your doctors don't work together as a team, you don't have a chance.

It means that when you ask for your chart and get it, you find out what your doctors really think of you. And it may not be pretty.
It means relying on doctors to follow through on their promises, and not have their egos take hold- when they're over their head, they need to say so. It means relying on yourself to know that someone's stringing you along. It means cynicism. It means that you need to be proactive. It means that it won't get better unless YOU do something about it- although YOU feel like curling up in a ball and crying.

It means that chronic pain is dismissed. That you're seen as just another whiny patient who the doctor can't cure. It means that you may look as bad as you feel. That weight gain from some drugs happens- and getting it off is just another thing that you can't afford to focus on during acute flareups. And that weight is unhealthy- you know it. And sometimes, my knees aren't happy carrying the extra 20lbs.

It means knowing the pharmacists by name. Knowing which one is going to be helpful- and for whom it's just a job.

It means dealing with doctors who treat you like crap. Others who say nice things to your face, but whoa- what did they just write about you in your chart.

It means you never know what's coming. Will today be the day that the condition flares and you can't predict it, and the thought's always there, lurking somewhere in the recesses of your mind.

It means your work may be affected. It means that you may live in fear of losing your job. It means that you need that job to keep your insurance- if you even are lucky enough to have insurance through work.

It means that if nothing flares up, or changes, even with insurance, I spend over $120 on prescription drugs per month. That's $1340/year if no other Rx meds are added to the mix. It means that when I travel, I have so many prescription bottles in my bag that it takes up almost a whole pocket of my backpack.

It means being told that your coping skills aren't good enough- and it's all in your mind.

It means that I will never get a chance to get back the last year of my life- lost to chronic illness, pain, tears and hospital bills

It means that at the current rate, I'll be paying off my medical bills for longer than I will my new car.

It means that sometimes I get tired of fighting for myself and throw a pity party- but no one wants to come. It's lonely being the only one at a pity party.

It means explaining that unfortunately, you can't make x, y, or z- although you've looked forward to it for a long time. And sometimes, letting other people down hurts more than you care to admit. Or would admit to anyone other than those whom you know are your ally.

It means finding out who your friends really are. And loving them. It means that they know that you're trying your best, and don't take your absence as a slight if you can't make it at the last minute. And you appreciate that more than you could ever let them know in words. So, you send cards, thank you notes, and other things to let them know how much they mean to you.

It means that if your partner isn't supportive, it's going to be a long ride.

It means that I know all of these things to be true.

[mopinko]

10. that chart shit- IF they give you your chart.

i had a large explosion with a long time doc. had a really warm personal relationship. she fucked up badly, and i fired her loudly. i tried to get my chart. i got about 20 pages of an 2" thick chart. i honestly only wanted the chart so that i could get some fucking care. she was convinced i was going to sue her. i know this cuz DH was a patient, and we were talking about a divorce at the time. man did she do a song and dance about that chart. i never did get it.

[ncrainbowgrrl]

11. The good thing about HIPPAA is that they HAVE TO GIVE it to you.

BY LAW. Makes it a lot easier for you to stand there and say "oh, you don't want to give it to me? I'm sure this would be of interest to the medical licensing board/news/other agency"

They also HAVE to send it to any other doctor that you designate to be your next provider...

My chart is a work of fiction.

[mopinko]

12. yeah, they have to, but

she stood there and told me that she would have to charge me, blah blah, the hospital owns my practice, the records belong to THEM, and the lawyers forbid blah blah, the next doctor will only want to see a few pages blah blah. i stood there and screamed until i at least got the relevent items.
yeah corporate owned docs. i love it. had postcards in the waiting room about that medical malpractice scam they tried to pass- "oh, keep your doctors from fleeing high insurance premiums. they are all going to run away, and live in caves if we let you sue them!!" oy