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!"