Fragile: handle with care

As much as I don’t like to admit it I am weak. I don’t mean mentally or emotionally I mean physically. My body is frightfully weak. Of all things, I am discovering that this is the one that is hardest for people to understand. My mom used to joke around saying, “well you’re young and able you do it!” But now that couldn’t be farther from the truth. My body is in full attack mode 24/7 and no longer has time to make sure muscles are sturdy, ligaments are well attached and tissues are protected. My body is focused on attacking my joints—offense only. Now, because of the disease the rest of my body is at a high risk. I have lost all the tone and strength that once carried my body effortlessly, and allowed me to youthfully spring back. When this disease struck I lost juvenile vitality and continue to lose it. Usually it’s “people of a certain age” who feel the way I do right now. I’m not that lucky. I get to experience the achiness of body every day for presumably the rest of my life. Oftentimes I feel more like my mom’s mother than her daughter in a body characterized as feeble. I am weak. I am frail. I am delicate. I am fragile. Please handle me with care.

It does not take much to send pain streaking through parts of my body. It takes almost no contact to register a massive blow, triggering the pain. When someone bumps into you in the hallway, you feel an instant of vague discomfort, say, “oops excuse me,” and then carry on your merry way. For me, this little bump could be the difference between a good day and a bad day. A little bump against a particular part of my body—namely the shoulders—will cause an ache that may last for hours instead of seconds. My body, though slow to move around, is lightning fast at recognizing pain.

The worst by far is still the wrists—the left one. Since my left hand is dominant it already is extremely overstressed. Writing, holding a phone to my ear, television remotes, using silverware, all of these are done with my left hand. My left hand is the one that I naturally throw up for a high five or fist bump. When I reach out to pick something up, or am getting ready for the day it is with the left hand I most often am using. I can’t just stop using it or I would get nothing done. But every time I do one of those things I am straining my left wrist. One time, when I went to tickle the stomach of my boyfriend he threw up his arm to block mine. A perfectly innocent and logically expected move on his part, he simply knocked my arm away from his body. Of course, he wasn’t expecting it to hurt me the way it did. It felt like a bomb had gone off in the middle of my wrist, like someone had smashed it with a sledge hammer and shattered the already little bones. In the few moments after contact I was sure my wrist had broken. I was in writhing agony as I cradled my arm against my body, wishing for the pain to egress. No, it was not broken. It was just the disease intensifying what should have been no more than a second of distress. I should be thankful that nothing broke, but I’m not. I would rather have it broken knowing it would heal, than to be left in painful limbo as I am now.

Foot massage anyone? Unless you have an inexplicable fear of letting people touch your feet, you would be crazy to pass the offer up. Unless, of course, you have a disease like mine. Too much pinpointed pressure quickly goes from a pleasurable experience to an unbearable one. This I think to be really unfair. I mean, really? Can I not even enjoy a simple indulgence like a foot massage? My feet can be so tender at times that even gentle pressure is extremely apparent (and not in the good way). My feet—the part of my body used constantly—should not be this vulnerable.

Would you like to know a physical fear I have? Falling down. I did this once while walking with my boyfriend on a trail through the woods. Slipped and fell. I flung down my hands to catch myself, and obviously this didn’t exactly have a positive affect on my wrists. Fortunately however, it was only my wrists affected. I am genuinely afraid of really falling down, like full body to the floor. At that point any joint would be completely defenseless. Wrists, shoulders, knees, or elbows: there’s no telling what kind of damage I could do by being a klutz. Every step counts, because every step I take soundly is keeping me from potentially weeks of hellish being.

It’s not easy to explain to people how easy it is to amplify my pain. A nudge here, a bump there—it doesn’t take much. My disease has made me susceptible to otherwise harmless contact, and people hurt me without the intent or the realization. I can’t expect all people to tiptoe around me everywhere I go. Besides, people forget almost immediately how fragile my body is. I’ve recently started a new method of explaining my frailty to people. I tell them to think of their grandmother (or if she is really young their great-grandmother). Think of what you would and wouldn’t do around or to her. For example, you probably wouldn’t jokingly pick her up and throw her onto the couch, or spin her around when you hug her goodbye. Then I tell them to think of me and treat me the same way they would their grandmother. In physical ability, I am not too far off. You don’t have to treat me special because of my disease in any other way—just remember how fragile I am and please, please be careful.

Ignorance Is Bliss

I can see it in their faces. It’s the same look every time on every person. They read like books with the same three expressions: surprise, sympathy, and confusion. Surprise because I have an autoimmune disease that they have neither heard of nor knew that I had. Sympathy because they learn that I have a disease that causes mass pain. And confusion because they can’t tell that I have a disease just by looking at me. Their eyes all have the same confused statement behind them: but you don’t look sick.

They’re right of course—I really don’t look sick. I suppose this is a good thing. If I looked like I was sick I would just get a lot of pitying stares, which I very strongly dislike. I feel like a small, wet puppy that is tied to a pole left out in the cold rain when people look at me like that it’s awful. Again, my wrist braces are the only outward sign of something. Not a disease, just something. People always ask me how I managed to injure both wrists at the same time, and I dread having to explain the real reason for the braces. It would be easier if they were sprained, but they’re not. And when I explain I always get the same reaction and see the same three expressions without fail, because I don’t look sick.

Most of the world is naïve to a disease like mine. They understand the big-name issues such as heart disease, all types of cancer, Alzheimer’s, and diabetes, but not so much autoimmune ones like mine. Oftentimes they just don’t know it exists, and since it is not nearly as common or publicized as others they would have now way of knowing about it. I myself never knew what it was until I was diagnosed with it, and forced to learn about it. To a certain extent, I can’t blame people for not knowing about my disease—and I usually don’t. But when I don’t receive a certain amount of respect for my limitations I have a problem. There is a massive difference between being naïve, and being ignorant. When you don’t know I have problems, I certainly don’t expect anything form you other than common courtesy. But when you are downright rude (regardless of whether or not I have a disease) that’s not okay. Or when you know of my disease, and provide me no allowance or even common courtesy it is really not okay. I have dealt with this on more than one occasion. Ignorance. Plain ignorance. People who think I am exaggerating or faking it just so I can get attention or gain sympathy are extremely infuriating. How can people be so rude? I don’t understand how they can know a genuine problem exists, yet play it off like it is nothing and even have the audacity to accuse me of stretching the truth for selfish purposes. Especially when it’s people I know on a personal level—it stings.

It’s always hard to get people to understand how limiting a disease like mine can be. I’m 18 years old, and people expect me to be able to conquer the world. I have pain radiating my hands, and wrists and I’m still expected to hold open the door for everyone else. I have had four-foot surgeries in the past six months and still experience a lot of pain when pressure from standing is applied to them, but I’m still expected to give up my seat for an adult. When all the children are sitting on the floor, I am supposed to sit with them. Except for the part where it is really painful on my right knee, and it is almost impossible to pick myself up off the floor without help. I think people know that yes, I have pain problems, but either fail to realize or choose to ignore that fact that it prevents me from being able to do a lot of physical activities—even trivial ones. People don’t understand the kind of pain I live with, and don’t know the kind of affect it has on me. I think a lot of it is because they don’t want to know about what is happening to my body. And sometimes they don’t want to be bothered by it. If they acknowledge that I have certain, special needs they usually feel duty-bound to make it happen. It may mean a little extra patience on their part, or a little extra effort. I guess it depends on how generous or selfish the person is. I know this can make me sound a little selfish by expecting people to come to my aid, but I have come to accept the fact that I need help and am open to asking for it. This doesn’t mean I like having to ask for help, it just means that when I know I will need it I make sure it is there. But it’s always aggravating to come across people who don’t seem to care.

Ignorance is a wonderful thing for those who have it. They have no problems, no cares, and no worries because they chose to stick their heads in the sand. Turn a blind eye. Fake naivety. Ignorance—and not just to disease—will be the downfall of humanity. How can anyone expect to improve our society when they are so busy ignoring some of the problems? I wish everyone could be on the same page, especially when it comes to disease like mine. Not just so they will act more kindly toward me, but also so that they will be a kinder person in general. Autoimmune disease is a nasty thing, and if everyone understood the gravity of our situations life would be much easier. We already deal with constant doctors appointments, medications, and never ending symptoms. We aren’t asking much from society. A little bit here, and little help there. We don’t want your ignorance. We don’t need your ignorance. We need your respect.