Written by Daniel P. Malito on August 3, 2010
Someone said to me the other day, “Oh, I could never do what you do.” She was making reference to the fact that I get up every day, no matter how bad I feel, no matter how many doctor's appointments I have to go to that week, no matter what else may be facing me. She was not the first to say something like that to me, and she certainly won't be the last. I even get called a “hero” from time to time. Of course, I thank these people and smile, but there is a simple truth that I try not to mention when people are paying me compliments – people do what they have to do to survive.
If there is one thing I have learned through twenty-four years of Rheumatoid Arthritis, and twenty-four years of meeting others who have similar illnesses, is that not only are there a ton of people worse off than I am, but just like me, those people get up every single day and do what they have to do to survive. Anyone who has had something as simple as a broken arm can attest to this fact. Without the use of their arm, they still found a way to drive, write, and type. This is one of the greatest gifts that humans have been given through evolution. It does not even have to be a physical adaptation, chronic illness takes its toll on mental health as well.
For example, I am 33 years old and I still live at home. It is not as if I couldn't afford to live by myself, but the simple fact I have to face is that from time to time I still need assistance. This is something that is very hard for someone like me to admit – as anyone can tell you, people in my position are usually fiercely independent. Unfortunately, if I take a spill or fall on the floor, I may not be able to get up by myself. So rather than getting a Life-Alert bracelet and saying that infamous line “I've fallen and I can't get up,” I choose to deal with wearing the scarlet letter of living at home at age 33. People who knows me understand my situation, but I still see girls wince here and there when I first meet them and they find out I am still living at home. Is it really that bad? No, not at all, I have the back of the house to myself and I rarely get bothered. Would I like to live by myself? Of course, but frankly, I'm not sure if that's a safe idea right now, so I wait and live the life I am currently leading – I adapt.
Another question I get all the time is when people ask me to describe what Rheumatoid Arthritis is like for me on a daily basis. I usually describe it like this:
Picture a time when you sprained your ankle or knee playing outside or in gym class. Now, remember how that sprain felt a day or two after the injury, and then multiply it by two and picture that same sprain happening to all the joints in your body at the same time. It can even happen in places you didn't realize were joints (such as your collarbone, the middle of your foot, and your jaw). Now, imagine you wake up every morning with this all-joint-sprain-pain, and you have a decent idea of what Rheumatoid Arthritis feels like.
After I finish describing the above, this is usually when I hear “oh I could never do what you do, I don't know how you can stand it!” Here is the big secret – you could do it too, because the bottom line is there is no other choice. Something I think many people fail to realize is that when you have a disease or other physical ailment, the only choice besides dealing with it is to end it all. Now, there are some who take that route, but for most of us, it becomes just another part of our lives. Granted, if a normal person was suddenly stricken with my disease in the middle of the night, they would not be able to get out of bed for a month, I'm sure. But being that I and others like me have lived with the pain and discomfort for years, it has become our baseline, our zero-point. When I wake up every day and my pain level is a 5 out of 10 (medical people LOVE the 1 to 10 pain scale for rating pain), then a 5 out of 10 becomes equivalent to a 0 out of 10 for a normal, healthy person. Adaptation yet again.
Human beings ability to adapt to any situation they are presented with given time, both mentally and physically, is truly impressive (and necessary). This is the reason that blind people end up with increased hearing ability, or people with one arm are able to use their other arm to do things many of us would need both hands for. In fact, I believe that people who have diseases like me are some of the most ingenious people in the world when it comes to finding alternate methods for accomplishing tasks. I can't tell you how many times I have grabbed the nearest toothbrush, hairbrush, or other poking item to knock a bottle of pills off the top shelf. Yes, I may get hit in the head a few times, but I get that bottle down to boot! (Getting hit in the head is preferable to asking for help.)
“Whatever doesn't kill you makes you stronger” is something I hear when in times of pain. While it has certainly become a cliché, if it applies anywhere, it certainly applies to my disease. I do appreciate all the praise that I get for “being strong” and “persevering,” but I know that each and every one of you would find a way to muddle through as well, because that's what human beings do. We adapt. Unfortunately, “whatever doesn't kill you makes you more adaptable,” doesn't have quite the same ring to it, does it?