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Please Don't Tell Someone With Autoimmune Disease, 'You'll Feel Better If You Lose Weight'

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There is an epidemic in this country. We, as a nation, are overweight. And that has caused a myriad of health problems. But autoimmune diseases aren’t one of those problems, so telling those of us who have such diseases to lose weight because we’ll feel better is like a slap in the face. Here’s why.

First, we’re already sick. Some of us are really sick. And we are painfully aware of that fact. Our illnesses affect every part of our lives. We may struggle as parents to give our children all we can physically and mentally and carry huge amounts of guilt when we fail. So we go out of our way to do fun things on the days we feel good because we know those days don’t last. We may struggle as spouses because we know the relationship will never be truly equal. We will always need more. And we may struggle in work, if we can work. We are the employees in the next cubicle that take extra days off now and then but still hear the chatter about us when we’re present. So we try to work twice as hard when we can be there knowing all along that it may end up putting us back into a flare up. But we do it anyway. It’s who we are, who we have to be.

We go through all this because we are sick and we know it. Our disease is part of us and it will never go away. We each deal with that reality in different ways, but it is our reality. The good days come and we take full advantage of them. But they don’t last. Whether it’s after just one day or a few weeks, we will fall into a flare-up again and we will need to rest. These are the days we feel our disease most acutely. When we can’t get out of bed or have to use the supports many of us would rather keep hidden. The canes, scooters and wheelchairs that could become permanent fixtures so we fight them as long as we can. On these days, we are at our most vulnerable. And it seems to be that on these days, people who don’t understand our lives comment the most.

So I will try to make something as clear as possible: I am not this way because I am overweight. Losing weight will not cure me. And getting more exercise will not end my need for a cane.

You see, many of us have gained weight because of our disease. It seems that every new med I’ve been put on has “weight gain” as a side effect. And the use of prednisone, notorious for weight gain, means most of us don’t stand a chance. The year I was diagnosed, I gained 80 pounds while fighting for control over my disease.

Also note that the types of pain and fatigue that come with an autoimmune disease are not the same pain and fatigue most people understand or ever experience. Go ahead and run a marathon and the pain and fatigue you’ll feel the next day are not even close to what people with autoimmune diseases feel in an active flare. Then realize how much activity we lost when our diseases got going and you can see how weight gain overshadows attempts at weight loss every time. I used to dance, swim, bike and play volleyball. Now, walking a straight line without losing my balance takes effort.

So, to put it all together, suggesting that losing weight would help someone who has probably gained weight because of medications and loss of abilities due to an autoimmune disease, and who also struggles with the idea that she’s already not doing enough for family or keeping up at work again due to said disease, is akin to a slap in the face. Our diseases are unpredictable. There is no proven way to reduce our pain. What works for one may not work for another. There’s also no proven way for us to lose weight easily. Meds make it really hard. Some of us have problems eating, so dieting is hell. And exercise, unfortunately, can land us in bed for days at a time.

That’s not to say we don’t try. I have managed to lose 60 pounds over four years. I see the good in eating healthy and exercising as much as I can. I just have to tailor everything around my disease. So the next time you see someone who is overweight with a cane, in a wheelchair or scooter, or even just struggling to walk, please take a minute to remember how unfair life can be and that not all of us have chosen or can control certain aspects of our lives. I for one would never want to see anyone else go through some of the “issues” my disease has bestowed on me.

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Originally published: October 14, 2016
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