Body image and lupus

Body image can go through a ‘loop’ when you have lupus (insert dorky giggle here). But seriously, I struggle with my self-image sometimes (which is a self-esteem issue unrelated to lupus), and when I was put on prednisone after being diagnosed, I hated how the side effects made me look. I felt frustrated because I couldn’t control what changed with my appearance or how much it changed.

Weight gain while on prednisone is common and its other side effects are well-documented. In my case, prednisone increases my appetite, and distributes fat around my midsection and the back of my neck.

Most likely if you are on prednisone and have lupus, your lupus is not under control. This means (for me) not being able to be very physically active or being very careful about the type, amount and intensity of physical activity I can handle.

Lately, I’ve been having a lot of difficulty with my lupus. I work out and feel good afterwards, but a day or two later, I am sore, but not the normal sore. I am inflamed. I am stiff. My joints ache and I am fatigued. It is hard to explain to others because they just think I am experiencing normal soreness after a workout. I have normal soreness too, but the rest is all lupus. I have ‘bear’ paws due to the inflammation which makes it hard to walk or do much with my hands. So I minimize my physical activity, which is frustrating when I am trying to lose some weight.

At this point, I know I need to increase my dose of prednisone. I had been on 5 mg daily, and increased to 25 mg today, which I will taper slowly in order to get over this flare.

Other than needing to be on prednisone, lupus has affected my hair. I have a lot of thinning, especially by my temples. When I had a biopsy on my scalp a few years back, the dermatologist said my hair was thinning due to lupus and not medication. I’ve tried lots of things to cover up the thinning, but it is a challenge. I recently got my hair cut and coloured to help disguise the thinned areas.

While I’ve had lupus for a long time and ‘know the drill’, I still get frustrated with what happens with my body as a result of lupus and medicines used to treat it. But I also know that every person, whether or not they have lupus, has their own medical and self-image challenges.

All I can say is you are not alone.

I see and recognize you when your face is swollen, when you are using a cane or a wheelchair, or wearing a wig.

I see you when you are looking to be physically active and live a healthy life with lupus and have a few setbacks.

I know the frustration, but I also know that we are resilient.

So we’ll keep working and doing what we need to do to live a healthy life together. Consider sharing your feelings in support groups. I’ve shared a few below:

Sampling of some Lupus support groups*

Lupus Foundation of America*: http://www.lupus.org/newyork/pages/support-groups 

SLE Lupus Foundation*: http://www.lupusny.org/programs/support-groups 

My Lupus Team: http://www.mylupusteam.com/

PatientsLikeMe: https://www.patientslikeme.com

Molly’s Fund: http://www.mollysfund.org/programs-services/lupus-support-groups/

*I put down these NY specific resources because these are where I turn to, but please check with your local area for more resources!