THE TOUCHY WEIGHT SUBJECT.

Time and again, the question, “What’s the worst part about being sick?” has been posed to me. And I believe to every other person with a chronic disease. Well, I usually give the same answer, “The weight gain!” but with a smile so many assume I’m joking and just brush it off. Well, I kid you not, vain and immature as that may seem, that is indeed my answer. I know, I know, between the uncertainty of the next minute and the appointments, the drugs, the pain, the misunderstanding; I should have a better answer than ‘weight gain’ but understand me for a minute. You see, before Lupus and her other autoimmune companions took me captive, I was one of the fittest humans I knew! I mean, having me on your relay team was an almost sure win! (But do I say!) I did cross-country, 100 and 200 meter sprints, relays were right up my alley and all these, without breaking a sweat. But now, even walking is a task. The shortest of distances and I’m huffing, puffing and in all sorts of pain. I know that there are people with Lupus who can exercise and truth be told, I envy them. Because I am not lazy (topic for another day), in fact, I’d love to be able to sprint again. But I know my body has its limits. Sure I can try, and I do, but damn the arthritis! This combination of diseases means each has its own side effects. The arthritis will have my joints on fire in a matter of minutes, the fibromyalgia will have my muscles begging and screaming and cursing my existence and well lupus, lupus just sits there and heightens the effect of all of them! The fatigue, the migraines, the joint and muscle pain, the neuropathy, not to mention the formation of clots……the list is endless.

You see, to treat autoimmune conditions, in most cases, they have to use immunosuppressant medication and the most common one is Prednisone. I remember when I started on prednisone about 8 or so years ago, I weighed about 48 kilograms, pretty standard for a 14 year old girl but this “monster” known aptly as “the devil’s tic tacs”,  made me gain over 10 kilograms in a number of months, spanning about a see-sawing 20 kilograms in the many years. That’s a lot of unprecedented weight for a young girl.
No one really warns and prepares you properly. Just the diagnosis of a disease is so relieving that when you are put on steroids, you don’t realize that you will one day wake up, look at the reflection and not recognize yourself under those chubby cheeks.

Weight gain is mentioned as a possible side effect, but doctors breeze past that to discuss ‘more serious side effects’ like corticosteroid myopathy, osteoporosis, steroid dementia syndrome, blurred vision ( I can see how weight gain doesn’t quite make the list but still….) At that particular moment in time, any drug that alleviates the symptoms is a God-send but wait till you try on those jeans and realize they don’t go past your hips or you suddenly are hungry all the time but will still contemplate starving yourself because you are gaining weight so rapidly or when the twenty minutes after a shower are spent degrading yourself, picking apart your flabby flaws. No one talks about that. I know my bones are wearing away, as are other side effects of prednisone creep up on me slowly over the past 8 years but my weight, that is a battle I fight on a daily basis as I look at those 3 white tablets in the morning and take them anyway because without them, oh, without them I cannot make the day! I’ve tried weaning off them but somehow, I’m just one of the unlucky few who cannot get weaned off prednisone.

You see, it is not about the fact that I gained weight. I know people are probably reading this and thinking how stupid it is for me to babble on and on about how terrible gaining a few kilograms is. I’m not wearing a sign that says,” I gained weight because of medication.” I’m just wearing the weight. I know, I know. It’s not the end of the world. Trust me, I know. Every doctor and every friend has told me that. I’m more than just my looks. I get it. But that doesn’t mean I have stopped wanting to take pride in my body when I look in the mirror. But the same can be said for people who lose weight from an illness as well. There is obviously nothing wrong with being overweight either. It’s not simply about the weight; it’s about how I gained the weight. It’s about the fact that every time I look in the mirror and see a slightly different person, before the steroids, I am reminded that I am not in control of my body. I can go for walks, I can diet, I can go to the gym and shape my body to be exactly what I want, and then it can all change with one prednisone prescription. Just like how I can stretch, exercise daily, take medication, and do everything the doctors tell me, and then it can all change when I wake up one morning and no longer have full control of my muscles.

There are obviously worse things about having a chronic illness. Chronic illnesses permeate every last element of a person’s life and gaining weight means nothing in comparison to losing the ability to walk, work, see and even talk. I think about those things all of the time, and I know that my appearance is not as important as my body’s ability to function. Maybe it was vain of me to complain about my weight when Prednisone is a necessity to keep me alive and well- but vanity does not go out the window when you’re told you’re sick. No one wants to hear you complain that you didn’t fit into your dress or that those bruises from your needles look ugly when all they care is that you can still walk and that you can still breathe. But that’s just it. I am still breathing. I am still alive, and I am still a twenty-something female. I will still suffer from sudden lapses in vanity and I will still encounter fashion disasters.

Parts of you change for the better when you are faced with an illness. Parts of you realize what your priorities should be and parts of you understand the importance of seizing the day and not sweating the small stuff. But still there remains, after the needles and the pills, that old part of you that gets self-conscious about the way you look and that obsesses over problems that are not, in the grand scheme of things, problems in the least. It’s easier to obsess over your weight and the fit of your jeans than it is to obsess over the physical pain and the emotional anguish that accompany illness, people cannot see my joint pain, they cannot look me in the eye and see the questions about my future that are wreaking havoc on my brain; they just see the weight.

And that’s why gaining weight has been the hardest part of being sick. It’s something rather trivial that still matters to me, even though people think I should be above vanity. It’s a sign that no matter how hard I try, I am not the only one who has control of my body. It is a visible reminder of my invisible illness.

I hope that you have learned something about weight gain and chronic illnesses. Kindly share this with a friend or family member and let’s keep the awareness train going! Let us learn, educate and empower! Thank you and till the next post, love, and light!

Keep well, keep warm, kNOw lupus, spread autoimmune disease awareness!