Figuring Out Where We All Fit In

Figuring Out Where We All Fit In

I think it’s ironic how in so many situations, we can feel alone, as if we are the only ones who feel a certain way. Then, when we share those feelings with others, we learn we are not alone.

Lupus stinks, there is no doubt about it. When I share details about my journey, I often add humor. This is partly because it’s how I cope. But it’s also so that those whom I am teaching about the ins and outs of this battle aren’t left feeling heavy, and hopefully, they’ll continue to learn.

I always feel a little guilty when I have really good days, especially when I check in with other warriors who are facing ugly challenges. I know it’s not a competition, but I almost think I’m doing something wrong if I complain or if what I feel somehow doesn’t match what others are feeling.

I know this sounds foolish. I have been chasing remission since I received my diagnosis in 2016. Two years later, I was told I had remission numbers, but my body still felt awful.

Recently, I read an article by another warrior in which she expressed feeling like an imposter because she is having more time in remission and feeling good than before, and she’s not sure where she fits in. I found her perspective interesting because just having a period of good days makes me feel like I shouldn’t mention it in the lupus communities.

Earlier this year, I had my first round of infusions, and for two months, I felt recharged. As I write this, I am in the U.S. to have another round of infusions, and one of my friends said, “You’re off to get your batteries recharged!” (I hope it lasts longer than two months this time.)

I had a strange sort of guilt for having energy during that time. I still had joint pain, but I’ve had some type of pain for decades, so most pain I can deal with. What I can’t deal with are the cognitive issues, the insane fatigue, and the constant and incessant coughing that shakes my body to its core.

However, just feeling “normal” — for even a small period — was confusing for me after so many years of clearly defined symptoms.

I think we all may feel like imposters for one reason or another. We have an invisible illness, and some of us had been told for years that it was all in our heads. Many of us “don’t look sick,” so co-workers, friends, and family think we are whiners or lazy.

Then there are those who are in remission enough that they can function in society, and their lupus may appear undetected, so to speak. I sometimes envision myself gaining more endurance and doing more, then I wonder what I would write about at that point.

I was at a point a couple years ago during which I almost considered quitting writing, but for the opposite reason of feeling well. I felt bad. And I believe that we speak many of the things that happen in our lives into existence, so I wondered if I just stopped writing about lupus, would things get better?

One thing my fellow warrior and I definitely agree on is that no matter what we may feel or think, we still have lupus. And no matter our status, this is still our community. We are not imposters — we are simply at different points in our battle.

I hope that if you are dealing with a lupus diagnosis, you’ll realize that you are not alone. There is no shame in wherever your body has you in the battle. If you are in remission and feeling well, I’ll celebrate and live vicariously through you. Enjoy it, and don’t feel an ounce of guilt about it!


Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.

Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.
Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.

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  1. Ann S. says:

    Thanks for this blog post. I do, indeed, feel like I don’t fit in with lupus. Friends say they understand, but then they presume I can do things I can’t. I wouldn’t say I’m chasing remission because I’ve really adapted my life since getting diagnosed in 2004. I’m also retired so many of my friends have some limitations, but not as many as I do. I hate when I say I’m fatigued and they counter with, Oh, I get tired, too. As we all know the word, tired, does not touch what we feel.

    • Kellie McRae says:

      Hi Ann, One thing I have learned over the short time I have been battling my body is unless you too are battling something similar, you can never understand, you can empathize but not understand. When folks try to compare what they are feeling to what I am feeling, I try to remember they are hopefully trying to show you that you are not alone (but honestly, sometimes I feel they are diminishing what I feel). This is why I just try to be more understanding where they are concerned and often if people can’t fix it, they really don’t know what to say. We know what we are dealing with is next level. I will be honest, this may sound a bit selfish too but I like that my friends are also slowing down a bit so I can keep up so even though their limitations are not yours, I think you may get more empathy since they do have some. All the best to you!

  2. Gaile Valcho says:

    I think, and I will speak for myself, that remission is the promised land!! I can’t wait until the day comes where I reach the elusive Remission Land myself!!! I keep asking my doctors ” When do I get to remission?” Like it’s some part of Disney World. It is the goal for me.. To be able to have one or two flares a year, get back to my running routine, live without the fatigue, whole body rashes, mouth sores… well, you know. Thanks for writing about it. I applaud all of the Lupus Warriors out there who get to live even for a bit in Remission Land. Any time you are out of pain, can have some sort of life back, I am so happy for you.

    • Kellie McRae says:

      Gaile you said a mouthful! lol, I was excited when my doctor said I was in remission but wondered when the good feelings were going to return. Only to learn that lupus remission is like lupus, different for everyone. I hope for that glorious day where I have great energy and low pain (I’ve hit the 50 year mark, I expect a few aches) but you get what I mean. We can both keep looking forward to it, I know its coming 🙂 In the meantime, I am sending you comforting vibes and wish you plenty of low pain days.

  3. Gloria says:

    I was diagnosed with SLE what I’m also going through that even though I shower I actually smell like feces my Dr said that I have a lot of inflammation I need advice

    • Kellie McRae says:

      Hi Gloria I am sorry to hear about your situation but I have no advice. That seems like something you and your healthcare team should work on. Sending you well wishes, I hope they get it figured out soon.

  4. Debra Kilmer says:

    Great article ! we are all in the spectrum somewhere. We learn to appreciate the good days, knowing a bad day is just ahead. And we can encourage each other from those experiences.

    • Kellie McRae says:

      Hi Debra, I want so badly to disagree with you but you are right, we do tend to take precautions on those good days and let the concern of how much we are doing that may cause a bad day come into play. I definitely appreciate the good days (maybe a bit too much) I do A LOT and of course I pay for it but I often think it was worth it if it made me smile. Stay encouraged!

  5. Rocky says:

    Hi Kellie, Thank you for this post. I can so relate! I’ve never gone into any sense of remission. I know your frustration when we see others with Lupus functioning in the world as if they do not have it. I have many fears of ‘what is going to happen to me tomorrow’ when I have a ‘feel better day’ (and by the I mean less or not much severe fatigue) and I do 2 loads of wash, changes my sheets and work on my plants simply to feed my spirit.
    Which is what today was like for me. I physically hurt so bad, regardless… so I have to keep moving to avoid the pain in some ways.
    But when I have fatigue (which is most days) I spend the day living out of my bed and sleeping on/off, don’t eat well, don’t take phone calls etc. I have no ‘in person’ support system so I get depressed because my nature is to be a ‘do-er’ and help others. I can also relate to you saying you almost quit writing about Lupus. So many days I say ‘just stop taking about it and giving it power, and see if it goes away’! LOL
    Keep strong my fellow Warrior. I admire you and always learn from you. Rocky (Florida)

    • Kellie McRae says:

      Hi Rocky, I feel the same way on my really good days, I get as much done as my body will let me, knowing that I may pay for the next day but we gotta just take each day as it comes right? I definitely celebrate those that find remission in the form of being able to live what appears to be an easier existence. The rest of us just have to muddle through loving the good days when they come. I do ok with the pain but that fatigue can be so ugly. I am wishing you more great days!

  6. Darlene McIntosh says:

    Hi Kellie. I was reading in your article today that you are on infusions for Lupus. What are you taking? I am on 500 mg of solu medrol evety 3 wks for the inflammation. I cannot hear from ear 8nflammation and am now a lipreader. My joints are so 8nflammed and I am fighting RA also. I have cety few days of remission and when I do, it is like you say I overdue and then pay the next few days by being in bed. My friends say they understand but unlesd you have this disease I don’t think you can. All we can do is keep on fighting, pain, hair loss,,joint pain..for me deafness. Your articles help me so much to know that I am not alone with these conditions. I am so grateful that you are doing this.

    • Kellie McRae says:

      Hi Darlene, I agree that unless you have this or another disease causing you to constantly battle with your body, it’s hard to understand. I’m glad my articles help you to know that there are some of us that can truly relate to how this disease affects you. I was taking Rituximab but this time they didn’t give it to me (I was actually quite disappointed). I know for me, I tend to definitely over do it but I also wonder when I will get another good day, the bad ones seem inevitable so I really live it up on the good ones. I hope you get some relief soon. Hang in there!

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