An Interesting Question

I’ve been struggling with a good way to answer a question that was posed to me last week by an online acquaintance. Today I have a better perspective than I’ve been able to come up with so far, and this is the best place to answer it since it will reach a lot more than just one person. I hope it will reach a lot of people.

What’s it like living with Lupus?

It’s so many things, that I think I tried to address the overall emotional aspect of being ill and never got around to a direct reply. It’s not that there is a simple response to give… but it does deserve some thought and some kind of answer. If you have any disease in the autoimmune inflammatory category, and live with it long enough, you’ll probably eventually be asked this question in one form or another. Everyone wonders, even when they don’t outright say it. The truth is that if we have any conscience at all about advocacy and awareness, we’re responsible for giving an answer to it. This is exactly what we all want… for someone to want to know what life is like from the inside of the disease. We want others to try to understand. There is truth in what I have stated before – if you aren’t chronically ill, it’s impossible to truly understand it. That doesn’t mean we can’t offer others an honest view and let them get a little closer. In silence we do not progress. If we do not progress… when will we see a cure?

Let me insert a statement here that there is no cure for Lupus, no. Please don’t post comments telling me about the wonderful discovery your personal physician has made that no one else in the world knows about, or some miracle product from another country. Just stop before you start.

The negatives are what everyone goes to right off. I can spell those out easily. I could tell you about waking up and not having the energy to sit up and think about getting out of bed, but knowing I have to find it somewhere. I could talk about the embarrassing hair loss (as a woman especially), the skin problems you fight to cover with makeup, the itching that doesn’t seem to respond to anything (not lotion, exfoliating, Benadryl, or sometimes even Cortisone), and the constant pain that seems to be everywhere at once. I could describe the patronizing demeanor of many physicians we have to deal with that seem to think you’re making things up, because you have nothing better to do with your time than let them call you crazy and pat you on the head. There’s the Dr visits, meds, specialist fees, and more that you have to pay for – multiple times because no one seems to have a clue what’s wrong with you. There’s also trying to find some comfortable position to sit, stand, lie down, or sleep in (to no avail) when you’re flaring, and unrelenting fatigue no matter how much rest you ever get. You have to adjust your mental processing to include things like not forgetting to have your Med Alert bracelet on if you go somewhere (it’s annoying, I take it off when I’m at the computer), and wearing sunblock so you don’t fry and cause yourself more harm (I’m photosensitive now). There are also the days when the sun hits you and it feels so good… so warm… so comforting… that you just want to stay there and bask in it, but you know you can’t. There are the missed events, parties, dates, and activities you have to cancel because you suddenly don’t feel well enough – and the times you fight to pull yourself together to do something anyway, and pay for it later. A flare can leave you stranded in bed, staring across the room at a window, wishing you could at least get up and look outside even if you can’t go out there yet… for days and weeks on end. A run of good luck where you do pretty well for months in a row can end abruptly with just as many months in too much pain to even want to hold a conversation with another human being.

You give up pieces of self-sufficiency and freedom bit by bit as you hold onto the shreds of what you had with your fingernails, not wanting to lose what you once were. You look at projects you no longer find it in yourself to care about, but wish you did. You stare at food knowing you need to eat some days and you’re too nauseous to bother. Then you have to eat anyway because you have to do that to take your meds. There is also the fun aspect of having to read every ingredient on every label, ask people what’s in a dish they prepared, and pick and choose like a fanatic on menus so you don’t ingest something you shouldn’t. You have to choose every product based on specialized needs for your sensitive skin and overactive/reactive system, so you don’t antagonize your own body. You hope that you have the ability to make friends and family understand why you absolutely cannot have them anywhere near you if they even think they might have the sniffles or have been exposed to someone sick. You face the horror of the inconsiderate ones that hug you and then tell you they’re “under the weather”, as if it’s no big deal that they just brought contagious pathogens to you by special delivery. Even more entertaining is trying to explain to people that your immune system isn’t weak, but rather quite in-tact and powerful… and it just doesn’t know when to stop. That’s the hardest one of all to get across. Once they hear that, they think you can’t catch anything and get sick. They don’t realize that the reaction of being infected will make you sick 3 or 4 times longer than anyone else.

That’s the tip of the iceberg, I’m sorry to say. Statistics are easy to look up, so I won’t go into that. I’m giving a human perspective here.

Those (and more) are burdens… great ones. It’s not however all that we live with, and all that our life is about. While it’s true that in some way, Lupus (or CTD, Fibro, RA, Scleroderma, etc) does define your life once it makes itself prevalent, it really is not who I am. I am still that girl who never does anything halfway. I am still a proud Native American woman of the Cherokee nation. I am still an artist, and a dancer, and a naturalist, and a writer. I still love, and laugh, and breathe, and see beautiful things. In the past I have had accusers paint an erroneous picture of me that implies I am all about negatives. That individual does not know me, and never tried, and only sees what they wanted to see… and perhaps what their own life has been. Anyone that knows me in RL hears me giggle a lot, and sees me smile, and gets to hear my sometimes bad puns and jokes. Anyone that has even bothered to converse with me in email will know the same. When it comes to posting information about something as serious as Lupus, I will give facts and not candy-coat it, because people deserve to know the truth. There are risks and bad outcomes from both the disease and the medications used to control it. That’s just a fact. We pray for good outcomes. Sometimes we get them. Sometimes we don’t.

There is more. Life with this is also about the amazing people that you meet. It’s the woman that is far sicker than you, and far sicker than she lets anyone else know… that can still smile, and ask how YOU are, and be there to talk to when you need a friend – even though she’s several states away. There are the friends you realize you’re able to help start finding answers for their own health questions when the similarities become glaringly obvious. There is the cherished one in your life that tells you in a dark moment of questions that there is nothing you could have done to change this. There are the new friends you make when they realize that you really do have their best interest at heart, and you’re not all fluff like most out there. There’s the instructor of a class who always has a pleasant smile and tone, and genuinely cares about your motivation to learn. There’s the pharmacist that made your day brighter because you shared a look and a laugh about something everyone else in the room missed… and then bothered to talk to you like a human being… ask your name… look at you like you exist. People that greet, and smile, and connect that way are so few and far between in this society anymore, that these really do stand out.

Then there is the person that stops and says… “Can I ask you a question?”

That one matters too. That’s the one that’s thinking. That may be the one that goes and tells someone else too… when they get an answer. We’re so used to having to fight to get people to listen to us within the medical community, that we’re seemingly always on guard – ready to fight for whatever it is. It’s survival. It’s necessary. Just make sure that it doesn’t overshadow those little voices and questions, when someone really wants to understand.


About Tala

-Livestream Broadcaster - Active in Periscope & Busker -YouTube, Twitter, Instagram, & Facebook Pages Advocacy for better quality of life with catastrophic illness & injury. Conditions I live with myself are my awareness platform: rheumatic autoimmune & neurological, women's heart disease Traditional First Nations (Native American) -Training: Tai Ch'i Chuan, medical terminology, cultural Medicine -Avid about hiking, camping, & outdoor adventure Special Interests: Natural health, everything from East Indian to East Carolina cuisine, 16th Century German fencing Favorite Travel Spots: Yosemite, Catalina Island, E. North Carolina, Northern CA redwoods/coastal rainforest ~I live as naturally as I can, stay on a whole foods diet (as in what I eat, not as in "a diet"), avoid as many synthetic meds as I can, and do not consume artificial sweeteners and most preservatives. If you're curious about why, see my posts.~ Periscope/Twitter ID: Tala_NoExcuses

Posted on February 3, 2011, in I Am That Wolf. Bookmark the permalink. 4 Comments.

  1. Awesome writing. You said it all and answered the question you were asked with eloquence and honesty.

  2. Great post, Tala. You’ve said what so many of us cannot put into words. I’m feeling really crummy today (weather-related, I think) so it really spoke to me right now. You’ve no doubt helped many of those who read your blog. Be well….

  3. love it!! only one little thing to add,must of the times we do not look sick,(unless when everything is swell up)
    Tala thanks is a great answer to that question,hope you are feeling better ..hugs Patty

  4. Thanks for this Tala. I have trouble expressing my thoughts very often now. You put into words what people like me can’t. We go through so much on a daily basis that I don’t know where to even begin. You are my voice lots of times. I’m sure there are many more people dealing with our issues that would agree. Thank you!

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