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Please, Don’t Call Me a Warrior

Over the past 14-plus years that I’ve had a connection to psoriatic arthritis, people and organizations have put many labels on me: warrior, hero, superhero, champion, and more. I’ve never really felt like I’ve measured up to any of these.

I’ve never served in the military. I never saved a life. I don’t have X-ray vision. I’ve never defeated a worthy opponent in a contest that really counts. After all, psoriatic arthritis still grips my life even when my symptoms are well managed. And, most importantly, I didn’t cure arthritis, my real nemesis on the battlefield.

Just like everyone else

I am no different than every other person who has been dealt the bad hand of this disease.

On really bad days, my pain is at a 10. Even those with mild psoriatic disease have probably experienced a pain level of 10 at least once. I’m lucky that mine is usually around 2-3 daily, but I know what those upper numbers mean when I’m flaring, and I’m grateful that the 8-10s are few and far between.

For me, and I’m only speaking for me, I’d rather be known as persistent – someone who refuses to give up in spite of the pain obstacle thrown in front of her. I don’t feel like a warrior. I feel like me getting on with my life and saying “heck, ya” to all the great, everyday life moments.

Tenacious? Ok. I’ll taket that.

A doctor once said to me, “The day you do not get out of bed is the day you let the disease win.” Those are pretty harsh words to hear at your first rheumatologist appointment, but I find them to be true.

I always muster the will to get up each morning. It’s never easy, and sometimes I have to ask for help or give myself extra time. But in the end, I always get up. I have a job and have to pay the bills. Staying in bed is usually not an option for me.

I’m really no champion because I get out of bed. Instead, you can mark me down for being tenacious, but so are other patients living with psoriatic arthritis. I guess the disease just makes us that way.

Also, fierce

Here’s a label I’m very proud to wear: fierce. I consider myself a fierce friend (and I hope my friends would agree), mother and wife. I carry this attribute over from my immediate circle to include patients in our community who struggle to find the words to defend themselves against labels some in society have put on them: lazy, faking it, exaggerating, or drama-filled.

No joke. I get red and fired up when I hear these attributes thrown around by people who clearly don’t know what it’s like to have psoriatic arthritis: Unable to walk, feeling real pain throughout their bodies, struggling to care for their child, losing independence… The list goes on and on.

In the words of Mr. T, “I pity the fool” who says any of this about a PsA friend within earshot of me. They will get a talking to unlike anything they’ve experienced before, and hopefully will come away with more education about psoriatic disease and more compassion for those who have it.

So, yes, I’m a fierce advocate, too. At least, I think so.

Warrior? Ok, maybe.

I still don’t consider myself a warrior, hero, superhero, or champion in my life. I just don’t think simply having psoriatic arthritis allows me to claim any of these labels.

But if I look at the labels in a different light, perhaps I can wear some of these from time to time. I can be a warrior, hero, superhero, and champion to the cause.

I can educate others about the disease and how it affects so many across the world and how the disease is so frustrating because not one person will experience PsA the same as another. I can be there to support others who have yet to find their voice. I can make an impact in my community and help raise awareness.

In fact, we all can choose to be warriors.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kerry
    2 months ago

    I love this so much! I never even heard of psoriatic arthritis until I was diagnosed. I thought I had RA and just left it at that. Then little by little I started to feel almost flu like symptoms and the worst pain I have ever experience. (at least this kind of pain) I thought okay, this is not RA. Went to my regular Dr and she just didn’t know. I had this awful skin issue on my head that was embarrassing but I didn’t think anything about it. Anyway, I went to a specialist and was diagnosed. I had no idea how painful this could be. Anyway, tried Methotrexate and after six months and said that is a no go for me. It was not for me. I haven’t tried any other meds at this point. I do hurt but like you said usually about a 2 or a 3. I watch what I eat and I do exercise which actually does help. I think staying active is so very important. It also helps to have other people to talk to that understand this type of disease.

  • Jaime Lyn Moy author
    2 months ago

    Methotrexate is the worst! My son was on a max adult dose when he was 6 years old. His psoriasis and psoriatic arthritis at that time was really bad. It broke my heart how sick he would get. I think he was on it for 1.5 years at that time, and then he went on it again when he was in middle school. At his camp for kids with juvenile arthritis, they don’t decorate with the color yellow because it reminds the kids of methotrexate. He’s 20 now and still is active at the camp in different roles, but even all of these years later, there still is no yellow. Some patients do great with methotrexate and don’t have any side effects, but I’m glad there are other alternatives now to help those who struggle to take it.

  • Jaime Lyn Moy author
    2 months ago

    I’m so sorry you have this diagnosis. Whether RA or PsA, both come with many challenges. I had an awful time with methotrexate. I was sick 3-4 days each week. I had to ask myself which is worse: PsA on its own, or PsA controlled with medications with side effects? Both affect quality of life, but the side effects of methotrexate were too much for me to handle. I got on a biologic medication and that made all of the difference for me. I have very few side effects now, and my PsA is well controlled. Sure, I have my flare-ups and extreme pain days, but they are few. Cheers to you and staying active! Glad to connect with you on this community. Wishing you all the best.

  • Ann66
    2 months ago

    I dearly wish to come off the methotrexate even after 12 years of this drug I still feel sick with it and I’m so swollen with the steroids I’ve tried every biological you can name some worked some didn’t but all stopped working as good the longer I was on them I’m just waiting to start a new biological that’s on trial just now but had to get lots of tests done before starting this colonoscopy endoscopy and some biopsies done just waiting on results fingers crossed all ok and I can start new biological my consultant has said I’ll never be able to come off the steroids but hopefully reduce them to such a level that I won’t get all the nasty side affects

  • Kerry
    2 months ago

    Methotrexate is terrible, I was sick 3 or 4 days as well then it was time to take it again! I tried it for about 6 months and said no thanks. I am sure at some point I will need to consider medication but right now I am trying to see how it goes without. People have suggested herbal supplements but I am a tad apprehensive about those. I will just keep plugging along!

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