Thursday, January 15, 2009

I'm Fine, How Dare You Say I'm Fine

There is a conflicting need within many patients to both be seen as a strong individual, separate from illness, and to also be acknowledged for the suffering they endure.

When I was waiting for my first transplant, I was dating a guy who wasn't always very sensitive to my illness. More than anyone, he brought this dichotomy out of me.

Guy: "I don't know if I can really be with a sick person."

Me: "Guy, I can't believe you see me that way! Sure, I may have some health issues but I don't let them get me down! I still do most of the things normal people do. I may have CF but CF is not my identity! I am not a 'sick person', I am Tiffany!"

Guy: "Yea, I guess you're right. I was talking to my friend about you today and he was asking me why you didn't work..."

Me: "Did you tell him it's because I was waiting for a LUNG TRANSPLANT?"

Guy: "No. I thought you weren't that sick. I mean you could work if you wanted to."

Me: "Guy, I can't believe you would say that! Do you not see how difficult simple things are for me? I have treatments and therapy to do and just doing ordinary errands tires me out so much I have to nap for hours. I have CF, asthma, and anemia! I'm waiting for a lung transplant! I can't believe you think I could work!"

(This conversation has been a condensed dramatization although, not far from the truth.)

I see this particular dynamic often on the online support groups for CF. In one moment a person with CF may be asserting that they are still able to work and be independent because they are exceptionally dedicated to caring for their health. They may even go so far as to criticize another patient for needing financial support, implying that if they took better care of themselves or resisted the urge to be a lazy patient, they too could live without being dependent on others.

As you might imagine, this particular perspective ruffles some feathers. An inevitable response from those who do need to rely on others is that they "have a more severe gene mutation" or they are simply "sicker than those who can continue working etc." This usually results in an explosion from those who originally implied that other patients did not care for themselves sufficiently or chose to rest on their genetic laurels.

Amazingly, the people who began by shouting from the rooftops about how healthy and self-sufficient they are quickly turn the tide with a litany of debilitating ailments. Suddenly, they can barely make it from one room to the other and each day is a struggle. In one conversation, they contradict themselves completely but seem to be oblivious to this inconsistency. When this is brought to their attention, the invariably flip-flop back to the original perspective--they are healthy, strong and exceptional.

It may sound as though I am harshly criticizing my fellow patients and, admittedly, this dynamic has the power to irritate me at times. More often than not, however, I can relate on some very deep and difficult to articulate level. I live my life in very much the same way, it's simply easier to see when other people do it.

I pride myself on living a full and busy post-transplant life. I appreciate when people acknowledge that I work hard. I often speak of my gratitude and how I would never change a thing about my illness journey. All of what I'm saying is true.

A few times during my travels kind, innocent and unsuspecting audience members have congratulated me on my new lease on life, a life with no more physical obstacles. To this I immaturely respond with my long list of current medical problems, even the ones that don't bother me very much. Why? Because I am both healthy and unhealthy. Because, as much as it is a contradiction, I want you to see me as strong and fragile at the same time. As much as I want you to see me as an independent, healthy woman I also need for you to appreciate my struggle.

As I write this, it has become clear to me for the first time where this seemingly illogical paradox comes from. My deepest perception of myself is found walking the line between strength and fragility. I walk that line every day, as do so many other people with chronic illness. I know that in this moment I feel strong but in a few hours, days, weeks or years, I will be weak again. I may be strong today but years of sickness have worn me down on the inside, eroded parts of me that I can not get back.

And here we have yet another area of gray that makes up the Art of Illness. I may present you with one side of myself, the healthy side or the sick side, and yet that is only a two dimensional projection for you to witness. Please believe me when I tell you who I am in the moment but always remember that I am three dimensional and can not always keep track of my full self. In truth, I am wholly and completely both robust and fragile.

"I am fine, but just don't agree with me!"
"I am sick but that is not for you to say!"


judycolby said...

What you say is so true. While my illness is not near as serious as yours (I have Crohn's) and it's pretty well controlled now, I can relate to what you say. During my worst years, I was sick most of the time but hated to have people see it, at the same time I wanted them to KNOW that I was sick. I don't know why that was.
Now that I have two children and a husband with Cushing's disease, I notice that they seldom want to admit to anyone but me that they are having a bad day.
I think maybe we can only be defined by the moment because the tide can change at any time.
I love your blog. Good job.

DP, Washington said...

I have tried three times now to leave a comment on this post... and have deleted each attempt because this topic is so difficult to describe... I spend so much energy portraying a healthy person... because I am often very healthy... and can resent anyone reminding me that I am "sick". However I also struggle with needing people to remember that I DO have limitations because I am "sick"... Your post described this SO succinctly... I love your blog.

DP, Washington said...

Oh... should have said... I have CF also. I am 39.

cindy baldwin said...

Do you mind if I link to this post on my blog? This is a phenomenon that I have seen in myself quite a lot. I want people to see me as strong, as an interesting individual outside of illness - but I also want them to understand and not judge harshly when I sleep a lot, or spend days on the couch, and so forth.

(By the way, as a Cystic-L member I am guessing that this probably stems from recent discussions on the list. If so, I'm impressed by how much positive you took out of such a negative discussion!)

Tiffany said...

I'm so glad to see this post has resonated with you all.

Judy, it's always great to know we are not alone, isn't it?

DP, thanks for the effort it took to respond to this sensitive subject. I'm honored.

Cindy, feel free to post this on your blog. Just for the record, I wasn't writing about a recent Cystic-L conversation. I have seen this dynamic for years and not just on Cystic-L. I have been meaning to write about it for a long time! :)

With Gratitude for your readership!

Sean said...

I'm new to CF. Not as in I hve CF, but I'm new to the world of CF (you see I met this totally amazing woman that has brought me to the world of CF through her blog....)

I wanted to thank you for writing this. I have EBS and my mother was wheelchair bound. We both struggled with explaining this world to others. They either saw us as too sick to know because we might die on them at any moment, or not sick enough and therefore milking our illnesses. It was never a winning situation. So I really like how you phrase my mom and I's struggle. i also like how you help me see CF differently than i may be currently seeing it.

Thanks again.