A person with lupus lifts the hood of a pill and discovers a weird side effects inside as exclamation points dance above their head in alarm.

What is Worse? The Illness or The Treatment?

As we know, having lupus doesn’t mean you get one prescription and you are fine. It generally means treatment after treatment, drug after drug, side effects after side effects. So it makes you think – what is worse? The illness or the treatment?

Long-term treatment effects

We take these sometimes very harsh medications. And yes, they make us feel better (in a sense). But oftentimes we don’t see the negatives in it until later in life. Recently, I was given the news that my bone tissue is dying in my legs, which has been causing extreme pain and lack of mobility.

I thought initially the pain was inflammation in my bones from my lupus and was treated in the hospital with steroids for it. A few months later, my rheumatologist sent me to get an MRI after he found out about the hospitalization because he didn’t believe it was lupus inflammation when I described the pain. That is when he found the dying tissue and believes it is caused by excessive steroid use for the last 18 years.

Coping with bad news

Anyone who has been diagnosed with lupus has most likely been on prednisone or some form of steroid to treat their symptoms. Some have been on heavy doses for most of their lives and you also know the awful side effects of these drugs. I knew prednisone was causing damage but I never expected to hear something like this. Now, I am possibly looking at surgery and other invasive procedures to try and stop the progression of this and to keep the ability to use my legs.

This news has been terrifying and hard to cope with. You want to look at your treatment as something that is helping you manage your disease and give you the ability to live a healthy and happy life. But what do you do when you are now faced with the ugly side of your treatment and that may have caused the same or worse damage then your disease would have caused.

"Stay strong my fellow warriors."

This is why we, as lupus patients, have to continue to fight for treatment made specifically for our disease, why we must constantly look into the research being done into the drugs we are taking, and why we have to become our biggest advocates.

We are the only ones that know exactly what it feels like when our body is telling us something is wrong and we have to listen. We have to understand and fight for tests, treatment, and answers so that we can continue to fight our personal battles with this illness and give answers to others that may be fighting this same battle.

We are all such strong fighters and have not been given this task in life because we easily give up. We fight so hard and we will continue to fight for the answers we deserve to get through this. We deserve a treatment that will help us in the long run and not hurt us. I hope we can all continue to fight for these answers and see more medical professionals fight for us as well. Stay strong my fellow warriors.

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