I focus a lot on the major changes. The pain. The fatigue. The organ damage. The vision loss. I can’t help but focus on those. These are all big deals. They are scary and life altering.
But there are so many other things. The small things. The day to day things. All the little ways my life has been changed. They seem so very minor in comparison. But they count. They definitely count. They all add up to chip away at your confidence, and slowly erode your self-esteem. Changing the person you are, in spite of yourself.
I came across an old photo of myself. I looked so much better than I do now. Yes, I was ten years younger. But it was more than that. Much more. I looked healthy. I had good color, I was an appropriate weight. My eyes were clear, my skin was clear. I looked healthy.
That photo showed how un-invisible my disease truly is. If I could stand next to a picture of my former self all the time, then people could clearly see the difference. It’s more than aging. But the changes happen so slowly, they are barely perceptible. Even to me. So this photo was a shock. The differences sound like they are just cosmetic, but they run deeper than that. And they do have a huge effect on your life. On how you feel about yourself. And in turn, how others perceive you.
There are so many differences. The first obvious one was my skin. I looked tanned and healthy. There was no malar rash across my cheeks. I didn’t have that pale anemic look. I had bare arms, and there were no scars from the staph infection that invaded my skin. And still lurks. It can reappear any time. My doctors know they can’t get rid of it completely. I have to be very careful when I get breaks in my skin…small grazes and cuts can quickly get infected. This happened last year and my arms were at first covered with a horrible, weeping rash, and then when it finally healed, left many, many angry red scars. They have faded quite well now. But they are still there. Scars of my invisible disease.
The next obvious thing is my hair. In the photo it is thick and full. I always had nice hair. Lots and lots of hair! Admittedly I didn’t take good care of it. Nor appreciate that it was an attractive feature. Now I have about a third of the hair that I had then. My hairline has receded, and I have bald patches. Not only that, my hair has become dry and brittle and wiry. It’s a bird’s nest most of the time. If I try to tame it and style it, it only becomes more obvious how thin my hair is. I’ve gone to a few hairdressers. They should know how to deal with thin hair. But they don’t. I haven’t liked what any of them have done…it just looks even worse to me. So I whack it back into a pony tail and try not to think about it. I rarely go out, anyway. The last hair dresser just suggested I get myself a hair piece for the rare occasions that I go out somewhere nice. Perhaps I will. But a good hair piece is expensive. And the last time I went out to dinner was well over a year ago. So it’s not going to make the priority list. And really I won’t wear it every day. And it’s the everyday stuff that matters, that slowly gets you down. Looking in the mirror and having bad hair and not being able to fix it, and being unable to make myself look nice. Vanity, sure. But aren’t we all entitled to a bit of that?
Then there’s my weight. Several of the medications I take cause weight gain. And of course I can’t exercise to the degree that I once could. The intensity required for me to have a lean, fit body is just not possible with my RA, at the severity it currently is. I have always been a larger person. Big boned. Plump. Whatever way you want to say it. I’m OK with that, it’s how I’m built.
But it does get you down when you eat a healthy diet, you exercise as much as possible and yet the weight continues to increase. And suddenly all your clothes no longer fit. And you can’t afford to buy more clothes, so I always wear stretchy gym gear. Whether I’m going to the gym or not.
The list goes on…swollen hands mean no pretty rings. Swollen, hurting feet mean no pretty shoes. Inflamed eyes mean I always look hungover, or like I’ve been crying for a few days. Yellow teeth that no amount of whitening toothpaste will fix from methotrexate. Chipped, broken teeth (from prednisone?). Yes, little things. But the little things add up and I now look and feel nothing like the woman in the picture.
She is smiling and healthy. She is happy. That was before this disease hit and I lost almost everything that mattered to me. Before I lost control of my life. Because much as I don’t like to admit it, my disease dictates much of what I can and can’t do on a daily basis. It’s just the way it is. From what clothes I can wear to what I can eat.
Yes, down to what I can eat. Such a simple decision. You eat what you feel like eating, right? Not if you have Temporomandibular Joint Disorders (TMJ) and you can’t chew solid food. I recently had a flare where I was in terrible pain all over my body, including my jaw. I couldn’t open my mouth wide enough to swallow my pain killers, because they were in capsule form. Luckily I still had some tablets, which I crushed up and swallowed. Tasted awful, but it worked.
And then there was the day I just cried because I could not open a jar of jam. I just wanted a jam sandwich. I had some fresh white bread, which I rarely eat. It was going to be a real treat. Some comfort food that I really felt like. And I couldn’t open the damn jar.
Not only did I feel weak and useless, because a jar lid was more than my hand strength could muster, but I felt so alone. There was no one I could ask to open the jar. Just me. It was in the middle of the day, and most people are at work. Normal people. People with lives Not that I could possibly bring myself to ring someone and ask them to come over and open a jar for me. Too silly. Too humiliating.
But it wouldn’t have mattered if it was 7pm at night. I would still have been alone. Just me. Me and the jar I couldn’t open.
So just cried. First I snivelled a bit. A few tears escaped from the corners of my eyes. Then I sank down on the floor and sobbed. I cried and cried and cried. I don’t know how long for.
Obviously it wasn’t about the jam sandwich. But that one little thing brought home to me in a huge rush just how much my life has changed. Just what this disease has done to me. How much it has taken. All the little ways that I am different. And that all those little things that add up to so much.