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Q&A Forum

Q&A Forum: Lupus Awareness Month

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As we wrap up Lupus Awareness Month, we are excited to share personal lupus perspectives from our Q&A Forum members.

We asked our valued forum members to share their personal thoughts and opinions on what they wish others better understood about life with lupus. Battling lupus is never easy, and it can be made even more difficult if others around you don’t realize the severity of the disease.

Check out this month’s Q&A Forum!

In this month’s LupusCorner Q&A Forum, Lupus Warriors share what they wish others, including friends, family, and doctors, better understood about life with lupus.

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Janell

What do you wish your friends/family understood about lupus?

How it “truly” effects us, also the people that comments “you don’t look sick” makes you want to to say you don’t look stupid either, but you have to be nice..😊

What do you wish your doctor better understood about your life with lupus?

Nothing, I cannot complain about my Dr, he does GREAT!

What do you wish the world better understood about life with lupus?

It is a true disease, we are not faking it to get attention, i wouldn’t wish this on anyone..
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Marian M.

What do you wish your friends/family understood about lupus?

That this is a constant experience of pain and fatigue with each day being a different degree of involvement. That though I may “look” fine, the truth is that I am far from it.

What do you wish your doctor better understood about your life with lupus?

Though the doctor can go home at the end of the day and enjoy his family, activities, etc., that is not the case for the patient with lupus. Ours is a day of pushing through each moment just to get to the end of the day.

What do you wish the world better understood about life with lupus?

We do not have this condition because of anything we did or did not do.
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Beverly O’Keeffe

What do you wish your friends/family understood about lupus?

That just because I don’t “look” bad doesn’t mean that I am OK.

What do you wish your doctor better understood about your life with lupus?

The emotional impact of my illness.

What do you wish the world better understood about life with lupus?

That I am not malingering and that it is not “all in my head.”

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Jas

What do you wish your friends/family understood about lupus?

Wish they can understand that it is “normal” that we will feel very very tired out of nowhere though still looking perfectly fine on the outside. And the joint pains that will attack anytime…

What do you wish your doctor better understood about your life with lupus?

I’m fortunate that my rheumatologist is very patient and will listen to my symptoms whenever I see her. But it seems like there’s nothing much they can advise other than increasing the dosage of steroids if the need arises..

What do you wish the world better understood about life with lupus?

Know about lupus and that a patient can look fine, but is actually feeling under the weather.
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Lupus My Reality

What do you wish your friends/family understood about lupus?

I wish they understood how hard it is to do the little I do. That I am in pain every day. That there is always some degree of fatigue. That I pretend every day in order to preserve my remnants of dignity and not worry them. That I live in fear of its random attacks. That it has robbed me of reliable balance and coordination, and that even typing can require ridiculous concentration. And that with every year that passes it steals another capability or strength, and another piece of my identity with it.

What do you wish your doctor better understood about your life with lupus?

That some of the damage is psychological and unmeasurable. That the huge amount of weight I’ve gained due to prednisone and poor mobility has crippled my confidence and sexuality and affects every level of my life, and I am heartbroken.

What do you wish the world better understood about life with lupus?

That lupus is random, insidious and insanely complex, and that this largely invisible chronic illness can change our entire lives and our quality of living. Almost nobody understands lupus.

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Lupus: Complexity of the Disease

What do you wish your friends/family understood about lupus?

That a Lupus flare can happen at anytime. Not just by one day or the next. A flare can start at anytime of the day or night. Flares are really random…

What do you wish your doctor better understood about your life with lupus?

How frustrating it get’s at times!

What do you wish the world better understood about life with lupus?

How unpredictable Lupus is and the large amount of damage it can do and it does to your body.

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Christine E.

What do you wish your friends/family understood about lupus?

I wish they understood the warrior spirit that is required to manage lupus. We are under attack from unseen forces which are unpredictable and debilitating. And science (as yet) can’t explain why. I often call on my Indigenous Australian Ancestors and my Norse Ancestors for the strength to keep fighting.

What do you wish your doctor better understood about your life with lupus?

My rheumatologist doesn’t have much time for education and worries surrounding lupus. He is extremely busy. He gets my medication right, but I wish he would ask if I am worried about anything.

What do you wish the world better understood about life with lupus?

Lupus is increasing and affects minority groups disproportionately.

Cindy Emilia Arévalo

What do you wish your friends/family understood about lupus?

That I have maybe one day in 6 months where I forget I have Lupus and can just live my life.

What do you wish your doctor better understood about your life with lupus?

It’s frustrating to be chronically ill for a disease that has soooooo many symptoms.

What do you wish the world better understood about life with lupus?

WE NEED MORE RESEARCH!

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Unseen Damage

What do you wish your friends/family understood about lupus?

I am fiercely allergic to the sun. I tell my family when my glasses turn dark that means I’m getting ultraviolet light. This light reacts with my body and triggers lupus flare’s. Unfortunately an umbrella or hat doesn’t do the trick.

What do you wish your doctor better understood about your life with lupus?

The doctor sees me once every 2 to 3 months. I deal with lupus two or three times a day all day. The doctor doesn’t know how insidious lupus is.

What do you wish the world better understood about life with lupus?

Pain with lupus makes it difficult to continue to smile at every moment. Pain jams the memory circuits and forgetfulness many times follows the pain. Please forgive.

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Seven Levels of Hell

What do you wish your friends/family understood about lupus?

I wish that friends/family/acquaintances knew that when I take a certain drug (infusion, surgery, etc.) it is not a cure. I may feel a bit more like my old self; my numbers might improve; my joints, tendons, or whatever may feel better. But, I’m never going to get totally cured. I am not a downer, but it’s just a fact.

What do you wish your doctor better understood about your life with lupus?

It is always there. Lurking. Even when I put it out of my mind.

What do you wish the world better understood about life with lupus?

Please be patient. You don’t know what someone with lupus (or fibro, cancer, mental illness, ms, etc.) is dealing with on any given day. Most days the pain is intolerable, at best, and we just get used to it. We are very good at masking pain (and don’t complain much), but sometimes that pain can get beyond intolerable. It’s enough to be put into the hospital (or worse, accused of seeking prescription pain meds, that many of us cannot tolerate). It can truly be seven levels of hell, and day by day you just don’t know what floor you are getting off on.
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Shanthom

What do you wish your friends/family understood about lupus?

I wish they could better understand that I can feel great and energetic one moment, yet severe pain and dead tired the next.

What do you wish your doctor better understood about your life with lupus?

I wish that my doctors would show compassion for what life is like with SLE, rather than rush me through appointments and seem as though they don’t truly remember my illness and symptoms, after being with the same clinic for the past 12 years. It makes me feel alone and disconnected in this battle.

What do you wish the world better understood about life with lupus?

I don’t find many people who really know what lupus is all about, but I wish that people would understand that each individual’s illness will be different: that it can range from virtually no symptoms to death, and everywhere in between. Also, that it varies day to day and that it can affect any part of the body and several areas at the same time.
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Milena

What do you wish your friends/family understood about lupus?

Tiredness or being afraid of do stuff I used to do.

What do you wish your doctor better understood about your life with lupus?

Most of the time, she understands.

What do you wish the world better understood about life with lupus?

It’s challenging and it’s not always that bad.

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