The following story I wrote last July after reading an article on Benlysta, a drug currently undergoing testing for the treatment of Lupus. I thought it appropriate to leave it here as part of the Share Your Story project.
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Putting A Face To Lupus – The Elephant In The Room
Hi, my name is Julia and I have lupus. Today has been a joyous day for those of us who suffer this disease and to our friends and family who take the time to really understand it. Unfortunately among all the news surrounding the results of the latest drug trials for Benlysta, all the focus has been on money and not the faces of lupus. Lupus is called the disease of a thousand faces for a reason. There is no cure and it is unknown what causes lupus. And despite television programs like House constantly throwing out the word lupus on every episode like some meme, most people have no idea what lupus is.
I am going to try and put a face to lupus. I am going to try my best to be very blunt and write from the heart. I am not going to talk so much about the physical effects of the disease. My focus will be about the psychological and sociological effects of the disease. This scares me for many reasons that you may understand as I try my best to tell my story openly and honestly. I hate talking about this as I always get met with pity and the “I’m sorry” replies when people become uncomfortable and do not know how to respond. I am not sorry I have this disease but I am always sorry for sharing that I have this disease. Hopefully this time I will not be sorry. I am not going to get into stats or give a bunch of links. It may help a reader understand and at the same time since no two lupus suffers are the same, it may not.
When I was first told I may have lupus, my heart sank. Lupus = death and I knew this better than most people as I had just lost someone close to me due to the complications of lupus. The death was awful because we had no warning. It is not uncommon for someone with lupus to be told many times, “This flare may be the one that kills you. It is time for you and your family to prepare.” So you do what you have to do and you get better, only for the next time. With the person I lost, we were told that many times over decades and every time she got better. Then without warning, she was dead.
Many of us who suffer from lupus have to see doctors regularly. I personally have 6 doctors that monitor my condition. When I am not fed up with living for doctors appointments and am being a “good” patient, I have to see some sort of doctor every two weeks and have blood tests done a minimum of once a month. My friend went in for her regular blood work. Her liver levels were off. Less than three weeks later, she was dead. When I got the phone call, I thought it was a cruel joke. What do you mean she was dead? She was just teaching dance a couple of weeks ago. Why now and without warning? Why not the many times in the past when we were told this may be it? It was at that time that my own road to diagnosis had begun. The last thing I needed was a reminder that I was about to be handed a painful death sentence.
The elephant in the room was becoming bigger. You do your best to ignore it. You do your best to live each moment in the now and not worry about the what-ifs. Because let me tell you, there are thousands of them. You find yourself every now and then looking at your children and fighting back tears. You have these moments often where you think “I have to take a snap shot of this and remember it always always and make sure they remember it always always as next week I could get bad news.” Then you beat yourself up for acknowledging the elephant and forgetting to just live. But then you beat yourself up again because you need to be realistic. You need to make sure that those whom you love know it and you really need to make sure that your children know it.
My heart breaks every time my youngest brings up my stroke. That was a scary period for my children and I HATE that they have to go through my illness. Two movies that make me bawl to no end are Finding Neverland and Stepmom as they deal with children losing their mothers to disease. My heart breaks because my children will go through that one day unless there is drastic change in the treatment of lupus. Today gave me hope and for the first time I was not afraid for what my children will have to go through despite my best efforts to ignore the truth and just enjoy them.
It is a very sad thing (and hopefully they find the why’s to this soon) that most women who are diagnosed with lupus are in their child-bearing years and get the diagnosis shortly after having children. I love my children with all that I am. However, had I been diagnosed with lupus prior to having them, I would not have had children. And admitting that out loud is hard for me since for as long as I can remember, I knew I was going to be a mom. I always wanted to be a mom first before anything else.
It is hard not to live in fear when you have lupus. There are so many things that can go wrong. There is no rhyme or reason to any of it. You go through your days and live until you hear news of some illness spreading or some letter comes home from your child’s school reminding you the cold and flu season is here and what extra precautions to take. You get this news and you have to stop living, even if its for a split second while you think about how this impacts you, your family and your daily life. You have to think about things that most people never have to think about.
It is not uncommon that I have to be put in reverse quarantine because if I get these illnesses, they can kill me as I have no immune system. To make matters worse, I cannot be vaccinated to even be able to give myself some form of immunity to some of them. There was one period where I was not allowed to leave my house, not even to go to the store for 2 months because I had 5 infections in as many weeks and the next one my doctor was afraid would be fatal. This always makes traveling scary as well. The last time I traveled my doctor actually said to me (and some may find this harsh but my doctor and I are very blunt with each other), “You better be careful or you will end up in a body bag.”
All the what-ifs that go through your head. Is the vacation worth getting an illness that could become fatal? An illness that for most people would be nothing to recover from. Is the fatigue that is sure to occur worth it? But you cannot live your life in a bubble. You take these risks because you need to live. That does not stop the fear and doubt that crops into your brain every time you start to plan anything. And even so these thoughts may be short lived and they do not consume you (or at least you need to believe they are not consuming you), they are still there. The elephant becomes bigger.
And then comes relationships and the dread of forming real bonds with people. I feel a stupid sense of guilt when it comes to forming both romantic and platonic relationships. I am not talking about acquaintances here but real meaningful relationships. I do not want more people than absolutely necessary to suffer through this with me. It is unfair of me to ask that of them. And if they are truly close to me, suffer they will even so they do it willingly because they care for me and love me.
It is very difficult for me to really open up to people and let them into this part of my life. Two reasons for this is because I do not want them to suffer emotionally as they have to watch helplessly while I go through a flare, and the other is because in the past the elephant in the room got so big, the relationships ended when finally they could no longer deal with. I am always afraid this will happen despite the fact I tell myself and others otherwise. I pretend I do not care and that I do not need anyone. When it is time to have “the talk” about the elephant, panic sets in. This is the moment where you can no longer ignore the elephant and you have to prepare the person who tells you they want to take a journey with you in life, “Guess what? I have this thing and well odds are that I will die before I am 60.”
What a joyous conversation to have to have with someone who has told you they want to take a life journey with you. I have had this conversation more times than I want. Having it one time is more times than you want. Some have said (and in my mind at the time and now, very naively), “Yes I am capable of walking this road with you. I want to take a journey with you. Let us build a future together even if its a shorter future because you are worth it. Let us live in the now and not worry about the future.” Then when the battles with the elephant begin, they decide they do not in fact have what it takes and leave. I cry. I pick myself up. I tell myself it is okay because I knew this was a possibility. I move on. I trick myself into thinking I do not need or want deep relationships only for the next opportunity to present itself and the fear and panic to once again set in. I want the elephant to die. It is so draining to ignore it and so depressing to face it. Then when moments come up where it starts to stomp its feet and make noise, you wish you had a gun.
I have suffered with illness all of my life. I was diagnosed with my first auto-immune disorder when I was 6 (psoriasis). I have spent a lot of my life ill and spent many years misdiagnosed with a myriad of things (some of them were almost fatal) until finally I got some much needed answers when I was finally diagnosed with lupus. That diagnosis was a mixed blessing. On one hand, I had answers. On the other, possible death. I do my best to ignore the elephant.
I do my best to live harmoniously with it and not let it depress me. For the most part I am cheery and grateful for the wonderful life I do have in spite of it. I do not take a single moment for granted and I have experienced and done some pretty cool things with my life. I have overcome so many obstacles that have been thrown in my path. I hope to be an inspiration to even just one person who suffers from any disease or chronic illness. I was fortunate enough to have two great women in my life growing up who dealt with chronic illness. They taught me that no matter how bad it may be, for someone else it could be worse and you do what you have to do to get through each moment.
I look at it like a 12 stepper does, second by second if that is what it takes you to get through the day. You do whatever it takes to help people (even if its just a shoulder or by example). You do whatever it takes to get better even if there is no getting better. You know what, you can have a great life regardless. You are also allowed to have moments of anger and rage. There are moments (even if they are brief) that I rage against it. Periods where I stop seeing the doctors because all they tell me is we are giving you the best treatment we have at the moment and hopefully this will pass. There is never any hope when seeing the doctor. Periods where I stop taking my meds as they only offer 25% relief and what is the point of living if I am tied to drugs, doctors appointments and blood tests.
Periods where I want to tell everyone close to me to go away because having me in their life will only bring them pain. Periods of depression. But I am human and I am entitled to these periods (even so I beat myself up over them and feel weak). Moments where I think why me? Something would be terribly wrong if I did not have these periods.
Today though is not a day to ignore the elephant. Today is a day of hope. Today is a day to look the elephant in the face and say, “AHA YOU SUCKER! After 50 long years we may finally have a gun. Not just a tranquilizer found accidentally while treating other illness but a real gun! It is time for you to leave the room forever.”
Looking back at my blog, I admit I am not as open and honest as I wanted to be, as I had hoped to be. However, I do hope for once I am not sorry for talking about the elephant. I hope that next time anyone is confronted with the elephant that they are not afraid to acknowledge it. I hope that next time someone tells you about this elephant, you may understand even a small fraction how your reactions to the elephant amplifies how extremely difficult it is for the person sharing that they indeed have this elephant living with them.
I hope…
My mum also has lupus and lives with much of what you have described so wonderfullly. She thinks i may also have lupus as i have many of the symptons, but i have psoriasis as well as psoriatic arthritis, i am currently undergoing more tests as they also think i have a muscular disease. The only test i was given was an “ana” Test, which come out low and there was no more said. i really appreciate the story you have written, as it has made me have a better understanding of it all :D. This has been posted onto facebook as i feel you should be credited for this and other people should be made aware of this conditon. Really well done and i hope things are going well :D. Chris.
Thank you, Chris. I too have psoriasis (I believe it is mentioned in the post) and along with it Psoriatic Spondyloarthropathy (what a mouth full). If you have no already, I recommend maybe taking a listen to the following: Living with Lupus – A Podcast by Julia Sherred. You and your mother may find it beneficial.
And thank you for your kind words. They are very much appreciated.
Thankyou so much for sharing your experience which so many of us with S.L.E. tend to play down in order to make the people around us feel better, we are often embarrassed to show any sign of weakness and play the stiff upper lift card but just because you cannot always see the illness and don’t always see the person when they are really poorly, doesn’t mean that its gone away, unfortunately we are generally smiling despite the pain we maybe feeling but as you say Julia,we never know who is worse off and thus do not make a big deal out of it.
As my son Chris has said,I believe I live with Lupus, I have a daily focus, whereas my family and close friends suffer it,along with their own demons facing them daily.
I am grateful for your courage and inspiration and hope this will raise awareness.
I pray that you keep your zest for life and a smile on your face as this is what people remember.
Godbless you and those around you. I hope at present you are well:-) Dee x
As you may have gathered, it is meant to read stiff upper lip lol:-)
Thank you, Dee. Presently, I am well enough 🙂
I hope the same for you and yours.
[…] emotions for me that I normally do not have to deal with on a day to day basis. I’m having to look the elephant straight into its eyes and really face it. This project forces me to be real with and about my disease in ways that I don’t always have […]