Friday, April 1, 2011

Sick Or Something Like It

As far as chronic illness is concerned, help can often be a strange bedfellow. We want help. We don’t want help. We know what we want/need. We don’t know what we want/need from others. At least this has been my relationship with help as it relates to my chronic illnesses.

For me one of the most helpful things has been the virtual chronic illness community that I have become a part of. Community building takes time and effort. While the internet has certainly helped mitigate this, there is still something to be said for good, old-fashioned, in-person communication.

But by virtue of our illnesses, we don’t all have that luxury.

Kerri of Six Until Me often shares heartwarming stories about interactions she has with other people with diabetes or those who are close to a person with diabetes. Quite honestly, her stories make me really jealous, because I can honestly say that I haven’t ever had the types of experiences she talks about in person. I’ve never been in line at Dunkin Donuts, or at the grocery store, and have lupus become the topic of conversation. (See also Laurie Edwards’ recent post - IRL: The Rare Disease Edition - at A Chronic Dose)

Why is this?

Well, in some ways, we spend so much time and energy trying to make ourselves invisible to others, to make ourselves seem totally okay, that it’s no surprise these kinds of interactions don’t happen. I think many of us who are chronically ill were quite independent pre-illness, which makes having to ask for help even that much harder.

If you don’t look particularly ill (whatever that means!), and you’re not talking about your illness (because there is a time and a place), how are people supposed to guess that you need help? I think that’s why so many of us tend to search for common ground and understanding from those who are also chronically ill. So much less needs to be said, and so much more is understood.

I’m lucky that early on in my immersion in the chronic illness blogging community that I met Maria Pfeifer through Rosalind Joffe. It’s the type of connection that once you have, you can’t imagine how you ever lived without it. I call Maria my “lupus mom,” but she is so much more than that. She is my friend, and there are times that I have confided in her and no one else. The thing is, I’m in Michigan and Maria is way over across the country in Oregon. I never would have met her if it wasn’t for the Internet. We try and chat in some way everyday, but we have met in person once.

I have participated in the yearly walks for lupus and rheumatoid arthritis for the past few years. And obviously, there are people there that have my illnesses, but for some reason, at least for me, these events never really build concrete connections with people. It’s more of a coming out party of sorts. More of I’m coming out so let’s get this party started as opposed to Let’s come out and make friends.

Recently, I was talking to a relative who told me that she does not view me as being sick. She said she views people that have mental illness or cancer as sick, but not me. I don’t want to focus on her definition of sick, I just want to focus on the fact that she doesn’t view me as such.

This brings about an interesting question. If you are chronically ill, are you sick, too? Is sick too much associated with acute illness? Is being sick all of the time just too sick to actually be sick? Okay, I’m getting bogged down here.

But the thing is, given that the definition of who is sick varies from person to person, what constitutes the need for help and giving help varies greatly, too. Again, asking for help is especially hard when you haven’t disclosed to people about your illnesses, or people perceive you as being totally fine.

I know that when I was first diagnosed, I had no idea what I needed from other people. When your life appears to be in shambles it’s hard to know at which point to start picking up the pieces.

But the point is that help is definitely a four-letter word. It’s hard to ask for, sometimes hard to get, sometimes hard to accept, and sometimes hard to repay. And this may be the crux for us who are chronically ill. Maybe we feel like we are a constant drain on people, and that we will never be able to give back all of the help that we have received from others.

I still have a hard time asking for help. But I think, and hope, that I have become better at and more gracious when I do receive help.

I think for many of us, needing help is the grim reminder that our pre-illness lives of fierce independence and reliance only on oneself are no more. But everyone will encounter a situation in life when they need help, sick or not sick. And let’s face it, since we aren’t masters of everything – although some might like to think so – we will all face situations that we can’t fix on our own.

Life is full of four letter words (including life). Help, sick, well, pain, love; there are thousands, the list goes on and on. Help and chronic illness can either go together like oil and water, or like peanut butter and jelly. Whether you choose to view help as a nasty four letter word is ultimately up to you.


  1. Good post! There are lot of variables here. I know when I say I have celiac I get a lot more reactions and commiserations ("My girlfriend/MIL/cousin/best friend" has that!) than any of my other health conditions because it is more recognizable. (Of course it is not *that* recognizable and is still way under-diagnosed, but GF food, restaurants, awareness, etc is much more common than awareness of most other problems.) And while an autoimmune disease, celiac, once treated by going GF, doesn't cause sickness in the same way...

    Whether their understanding is correct or accurate (usually not) I do think people at least know the term diabetes, or know someone with it. And while I know a lot of people with RA and several people with lupus, I also think people associate those conditions with older people--they don't expect us to be younger and sick with these conditions, especially if we don't "look sick."

    It's really hard to define "sick." There are the ongoing symptoms we all navigate on a daily basis, plus the acute symptoms when we get what I call "normal people sick," like with a cold or the flu. Right now, I have a terrible cold that is making my lungs much worse, and my adrenal insufficiency is much worse so I can't move my arms and legs well. My husband took some pictures of me with the baby and I didn't like them. "You look tired and sick," he said. "Well, I am," I responded.

    "You always look tired and sick in pictures," he said.

    Huh. So there's that. I guess the distinctions between acute and chronic aren't as definitive.

    Anyway, good post and thanks for the link!

  2. Great post - I think one of the hardest parts of having a chronic illness and asking for help is the inconsistency: the very same activity can require total help one day, and none the next. If that's hard for me to understand, I know it's hard for the people who support me.

  3. Well written, Leslie. Yes, help is a weird subject indeed for chronic illness.

    (Btw, I think of "sick" as one of my conditions making it harder to do my daily routine - work, exercise, eating right, sleeping well. It can happen with diabetes when I'm what Kerri calls "real people sick" because high blood sugars make a normal cold worse. It can happen with anxiety and depression because, well, I don't want to do anything when I'm at my worst. And I was most definitely "sick" when I went undiagnosed with hypothyroidism for so long.)

  4. You're sweet - and I consider myself the fortunate one. ;) Thanks, Leslie, for bringing up the help-word and pointing out how unique our situations are from one person to the next. I run into times during discussions where some participants take issue with the phrase "chronic condition" rather than "chronic disease." With all they go through, they feel "disease" reflects how devastating their lives can be some days and "condition" implies that their challenges are mere inconvenience. Then, there are others who feel disease sounds more like they are under attack rather than something they can learn how to manage.

    Whatever the lense we use to see our present lives through, we just need to keep looking out there for some great people to help us through it all. People like you.

  5. I can't believe that someone doesn't consider having RA and Lupus as being 'sick'. I also have both and I know I am 'sick'. Yes, I have remissions or good days, but generally I can only now do about 1/25th of what I used to be able to do - and I feel like hell most of the time. How is that not sick? thank you for this post - somehow it helps to know I'm not alone. yvonne

  6. I completely agree with "Never that Easy". People don't understand that chronic conditions/illnesses/disabilities means that they are also episodic and come in waves. People also tend to find the fact that stress triggers the onset of exacerbations just too coincidental.

    On the other hand, if someone has the flu, or cancer, or the like... it makes sense to most people that "stressing" someone out while battling their illness would exacerbate their illness...

    Chronic conditions, especially those that are unseen are very challenging to handle on our own, but also challenging to ask for help because– 1) We aren't sure when we will need help, so it is difficult to plan, and 2) Others see us during a good day and judge...

    For example, some kind-hearted person asked me the other day when she saw me with my walker if "something was wrong" or if I was doing "a day in their shoes" experiment, because she has never seen me with a walker before. By now I know to take these comments with a grain of salt and translate them to sincere concern, and at some level I find it better than what most people do, which is avoid looking at me at all when I have my walker. But it has taken me a great while to get to this point. Not easy.

    Lastly, having a chronic condition means that you still see glimpses of your "former life" every now and then when you are feeling good/better. It is heartbreaking to go back to the point of exacerbation after such a high, makes me want to forget that I do have a chronic condition and do something rash, like pull an all-nighter on a project.

    It's hard, no way around it... But with good friends, medical support, and confidence to openly alternate between good and bad, despite what others say or think, it gets better.

    Hugs to you all! Thanks for your openness!

  7. Wow, "help" really is a four letter word. I'd never thought of it that way. (I've never commented before but I've been following you for awhile now. Thank you for writing.)

  8. Great post! It is hard to ask for help. I especially liked your observation that with invisible illness we spend so much effort trying to be normal. I often get caught in that trap with my Crohn's Disease and I think that prevents me from asking for help.

  9. I find it kind of interesting that your relative includes mental illness but not chronic illness.

    I have both, and I find that managing one is much like managing the other. You figure out what makes things worse and what makes things better, you develop techniques to make the best of whatever resources you have (and the fact that your resources are variable), you have worst-case plans in place, and you do daily things to keep you as 'well' as possible (like taking medication, exercising, pacing, managing your food, sleeping the right amount, so on).

    But then, in my experience, most people who think of people with mental illness as 'sick' tend to have pretty horrific ideas of what we're like.