I’m upfront, honest and completely frank about my Lupus. Why? Because it’s about damn time someone was. There’s nothing to hide about it or for me to feel ashamed about. It is after all one of the biggest underlying parts of my daily life. When I don’t feel good, I voice it and when I do feel good, I also say so. Many more times than I can count someone will quietly say to me after they find out I have Lupus that someone in their immediate family has either A: passed away from it, B: lives with it or C: they themselves have it but are too afraid to say anything about it. I can understand C, there is a great hail storm that comes with the territory of being open. All of the sudden I can find myself in a mine field of questions which I have to ever so gracefully walk through, even on the days when I don’t even want to talk about the weather. It’s part of choosing to be open; I have set myself up for many trying conversations.
One of the first reasons I chose to become open about Lupus is just to give it a physical, known face. It is one thing to possibly hear about on T.V. or even never have heard of it before, but it is another thing to actually “see” it. Recently in my nutrition class at college, the instructor asked the class “What is an auto-immune disorder?” and “Which ones can benefit from nutritional changes?” Some golden standard AI disorders were named off like MS and RA. However, when it came to whether AIDs was an auto-immune disorder, the class agreed it was. Which it is not. I then went on to give the example of Lupus as an auto-immune disorder and well… I got an outrageous response from my classmates. The misconceptions my classmates had were saddening to me. It’s not a disorder to be made fun of nor is it a disorder for those who are just lazy and slacking. Now they know different… I opened up their eyes when the discussion returned a couple days ago.
A challenge I run into when conversating with other people is “What is causing your Lupus?” I don’t know why, the doctors do not know why and researchers do not know why. In the land of modern medicine where so many things have an answer to the “why”, people can be rather baffled by my answer. Then I generally sit through a speculation type conversation… maybe amino imbalances, maybe micro-nutrient issues, maybe hormones, maybe different triggers of different origins, so on and so forth. I think you get the picture. After so many conversations of this, it is so tempting to just be a total butt head to the other person. If there’s one good thing that has come out of my open battle with Lupus, it would be the great amount of control over my mouth/temper I have gained. It isn’t easy being polite to someone after a half hour conversation about the unknown origin of Lupus, then their speculation on how to make me “all better” and I feel really lousy the whole time. What goes through my head is a reader board of “You chose to be open, this is part of it. I feel exhausted, when will this be over so I can go sleep? If only it were that simple…”
Another reason I am open is because I am so young with SLE and this disorder is alienating. I still have yet to meet another person who has SLE and is 18 or around my age. For many who know about the disorder, they think of it as an “old woman’s disorder.” It’s not. This is alienating because people who have it (including myself) can feel very alone. Almost nobody really understands what I am going through completely. By opening up my trap and sharing my experiences when appropriate, I help people understand. The feeling of alienation is far less when everyone is one the same page.
In the “take the pill and it’s fixed” mentality of many people in this modern age, it can be hard for a person to comprehend how I can take my medications and not be “fixed.” I personally find it depressing that there is a magic pill so men can perform for days and women can have eight babies but there is nothing really magical for Lupus. Which sucks. The good vs. bad has to be heavily assessed every time a medication is added or even a dosage changed. I still haven’t found a great way to convey this to people who just don’t understand. Revelations do take time…
It can really bug me how people can assume I don’t understand. The amount of guts it takes to say “No actually I do understand and here’s why” can be tremendous. Old ladies can be down right scary, they have had years of practice of laser eye death stares. Plus there is nothing like the afore mentioned sentence to make an entire room stop in dead motion and stare in silence. 18 going on 81 might best describe how I feel on the inside. From the outside I look young and youthful. Either the old ladies accept me or I know who to avoid hurriedly the next time I am in a social situation with the group.
Then comes the mentality of “Just suck it up and live with it. You have been living with this for years now, get over it.” No. I don’t care if a person has been dealing with illness for two days or two thousand years, people need to vent sometimes no matter how long they have been dealing with it all. Healthy people will probably not understand it, but the constant grinding of unwell is dulling to the soul. I stay as open as is comfortable for me to others about the emotional coping side of Lupus. Just today I read a comment on the interwebs about how a certain person had only been ill for a fairly short period of time and was “inferiorated” about how limiting it is. There will be an end of illness for them but more than likely not for people like me. The anger just multiplies. Years and years of experience may bring good coping skills but the anger still comes out. So believe it or not, I do find it acceptable for a person to openly but in a controlled way express their anger towards their illness. I know I do it. But the hazard for misunderstanding is extreme when I do. Some might think I am giving up or wallowing in the mud of pity. It’s just not so. Every time I “take off” my cape, I still face a back lash from someone. Whoops! Stepped on a land mine in the mine field!
I don’t want people to be afraid of me. Quite literally I feel as though as soon as I share about Lupus when appropriate, people view me as though I am wrapped in caution tape. Wrote on the tape is “Caution… Lupus… Caution… Different… Caution… Scary…” People who were not raised around a person who is sick or was sick tend to lack the ability to feel comfortable around me. Which given the general assumption most illnesses are contagious or sick people are scary, I am viewed as hazardous waste material. There are moments where I wish I had an “I’m not going to kill you” tattoo across my forehead. I take a risk by being open but I am of no risk to another person… most of the time. I am far more of a threat to a toaster or washing machine!
Finally, the times where I just don’t want to talk about it but someone else does with me. What do I do? I don’t really have office hours or a toll free number but sometimes I have to say “I’m sorry but not today.” Sometimes I trip a land mine with “I thought you were open and willing to talk but obviously you’re not. You need to stop saying things about Lupus if you won’t talk about it. It’s rude.” I can’t win them all but honestly it’s better than me holding a conversation where I visualize murdering every appliance in the Maytag store in my head as I monotonously reply to the plethora of questions asked by the other person. This is how the washing machine died, again, for the fourth time.
Some of this might surprise you, it may sound familiar or (hopefully not) you’re scratching your head and thinking “what was that about?!?!” Anytime one opens something up, there is always the unknown and these are just some of my “surprises” I can be faced with on a daily basis about my can of worms.
Wishing everyone lots of pretty pink spoons for Valentine’s day and good pain free days!