Note: The following was originally written for The Lupus Magazine. As it is no longer online and I would still like people to be able to read the articles I wrote for that magazine, I am dumping them all here. Originally published February 2011.
Up until a short time ago, I had no idea what I was going to write this month. It seems that I’ve said every thing I need to say about how lupus affects my life, whether in both of my books or my personal blog. I realize that most of the readers here are not familiar with my story. Unlike some, I am not new to telling my story. I’ve been telling it for years. And sometimes, you just get sick and tired talking about it. Especially when you are having to repeat the same things over and over, ad nauseam. At times, it can feel as if you are hitting your head up against a brick wall.
I did something I rarely do. I asked my friends on Facebook to suggest a topic, one that I have not written about already. I asked for help. It is extremely rare that I’ll do that. It was not met with the response I was hoping for. It was even treated as a joke. Yes, I make a lot of jokes at the expense of the absurd things lupus puts my body through, but when it comes to talking about lupus and raising awareness, I find jokes to be quite insulting. On top of if, I was tired. My brain didn’t want to have to exert any more energy than absolutely necessary. Having someone be so blasé to the situation, someone I consider to be a close friend, hurt me to the core.
Then another friend asked me a question. He is studying to be a counsellor. He lives in the UK. Until this past October when Stephen Fry tweeted about my second book, he had no clues about lupus. He has never met anyone with lupus in the UK. Until a very short time ago, he had no idea that there was a UK Lupus Organisation. In an earnest attempt to help me come up with a topic, he asked, “[…]if anyone has tried counselling or therapy?”
My brain sputtered for a bit since this is something that has been discussed quite often. Even since I came on board here, there have been a few articles written on this topic.
We continued our banter back and forth in the comments of my original status, as this area of therapy is something he’s quite interested in. At one point, I responded, “Every one deals differently as it affects every one differently. There is no one way to counsel. Most of it is grief therapy. But with lupus patients, we never really get to reach the final stage of grief, as we are slowly dying and just have to learn to accept it.”
And then it hit me. The topic for this article. And to be quite frank, it is something I am loathe to discuss. Currently, my brain is trying to do every thing in its power to distract me from it, including writing an introduction that may be much longer than required. I think part of this long introduction is to not only help me settle into the topic, but to remind myself and every one, there is always something to say. These things need to be said, especially when people act as if it isn’t a big deal. They need to be said even if we want to raise our hands and quit in frustration.
I do an excellent job masking my disease. Some days, I think I’ve turned it in an exquisite art form. A recent example of this: I was doing my laundry. I took my clothes from the washer and put them into the dryer. Instead of turning on the dryer, I turned on the washer. Minutes later when I realised what I had done, I do what I always do in attempt to squash the voice in the back of my head that is raging, “You stupid, dimwitted, useless cow!”. I turned it into self-deprecating humour. I made a lighthearted tweet about it and a Facebook status update. I laughed about it with my children. I did every thing humanly possible to stop the miniscule part of me that was tearing me down, threatening to overtake my mood.
We do this often in my household. When my children make similar errors, due to the raging hormones of teenaged boys, we joke and say, “At least you come by it honestly.” As a unit, we try our best to see the light in the situation. Because of how well I do cope, at times I feel as if people forget that there is a constant war raging on inside of me. They fail to realise that I joke for two reasons: 1) To protect my sanity; and 2) To protect those around me. Because I appear to do such a good job at it and it appears that people forget about the struggles that I face every single moment of my life, I admit that I have moments where I think, “Maybe I should just piss and moan all the time and then people will try to understand. Because I’m suddenly feeling rather invisible and feeling as if my struggles are not taken seriously.”
When my friend asked me about counselling techniques, I knew that there was no way that I could possibly answer him in short form. Every one of us who struggles with this disease is unique. The way lupus affects us is unique. The way we cope is unique. Some of us use humour. Some of us don’t cope at all and turn to drugs, alcohol and suicide. Counselling someone with lupus is as unique as our different drug therapies. Sure there will be some overlaps, however the overall framework has to be tailored to the individual.
But what about those around us? Sometimes we get so wrapped in fighting our daily war, we are so busy getting through our moments to moments in an effort to survive our day, that we forget about those closest to us: our significant others (if we have them) and our children (if we have them). They are fighting this war as well. And their war can be just as invisible as the war that rages on inside of our bodies, until that moment where it just explodes. Those closest to us become collateral damage and we incur more damage as we reside in the blast zone.
I’ve witnessed this collateral damage when a child turns into a heroin addict, because he can no longer cope with having to raise his brother, as his mum spends most of 20 years in a hospital and his dad has to take care of the mum. And then heap on top of that, never being allowed to have friends over because she is so ill all the time. I’ve seen a husband become completely lost when his wife dies, because all he did for decades was live around her lupus and live to help her. Then when she was gone, he just didn’t know what to do anymore.
In my own life, I had a common-law partner leave when I was beginning my road to diagnosis. He had been planning his escape for six months. It wasn’t until I had planned a nice romantic weekend alone, with no children, that he decided to tell me. He had waited for the moment they were out the door to spring the news on me.
I had another relationship move out, in the middle of night. This was shortly after my stroke and then I spent the following winter in reverse quarantine because I had 5 infections in as many weeks and my doctor was worried the next one would be fatal. I was angry and had a fit where I threw my medication across the room, because I was just fed up. We had an argument because he was going to go out with friends and I was sore because, yet again, I had to stay at home, alone, to stew in my illness. Eventually, we resolved the argument. Or at least, he kept reassuring me that it was resolved, only for me to wake up in the morning to find him and all of his belongings moved out of the house.
And then there are my children. For the most part they are happy and adjusted. But then there are moments that clearly illustrate that, even though they can joke with me about my disease, it is eating up a part of them. The way this comes to the surface is (and it is actually quite healthy because at least they are vocalising it) through comments made. When I had H1N1, my oldest asked me, “Will you live? Don’t lie.” One night, my youngest and I were watching a movie. Out of the blue he asked, “Mum… why isn’t there more focus on Lupus fundraising? Why do people care more about Cancer than they do Lupus? Do they not understand Lupus can kill you too? I don’t understand why nobody cares… I don’t want you to die.” More recently, before I was about to go on-air for one my radio shows, my youngest said, “Good luck and have fun with your show! Don’t have a heart attack or another stroke while you are on-air, please.”
Every time I come down with any illness, even a simple cold, the look of fear on their faces, despite their best efforts to mask it, speaks volumes.
So to be able to give an answer in regards to counselling techniques for lupus patients is not an easy task.
There are only a couple of things in this regard that I do feel quite comfortable saying. 1) Every patient and their family’s counselling needs will be as unique as their disease. 2) Being extremely aware of this wide range of emotional fallout, acknowledging it and facing it head on is the first major step to combatting it.
Lupus patients need to be aware of all of these possibilities when entering a relationship. After my first relationship walked away, I made a conscious effort to be fully aware that this is very likely to occur again. I didn’t let it inhibit me from seeking new relationships. But I entered those relationships knowing full well every possible outcome that I could possibly think of. So when another person left, even though it hurt, it didn’t devastate or surprise me. I moved on from it quite quickly and easily. Now that is the tricky part. A lot of people do not understand why it didn’t shatter my trust in people and how I was able to brush myself off so easily. The easy answer (those who are very close to me are well aware of this), is that by nature, I’m a very pragmatic and logical creature.
If you do not have children, you need to decide if you can put them through your disease. You need to ask yourself, how are you going to cope in those moments that is becomes apparent they are collateral damage? It is one thing when the collateral damage is your significant other or a friend. It cuts you to your very core when it is your children. How are you going to comfort them? How are you going to stop beating yourself up because they are hurting? This discussion came up not so long ago with a young woman, with lupus, who has no children. She was weighing the pros and cons of a new medication her doctors wanted to put her on. One of the side effects is possibly having trouble conceiving.
Very plainly and bluntly, I told her that if I had been diagnosed with lupus prior to having children, I would not have had them. I’ve said the following before, but it bears repeating, admitting to that is the hardest thing for me to do. It literally makes me sick to my stomach and I could vomit.
For as long as I can remember, I wanted to be a mum. That was my goal in life. That was going to be my job before I did any other job. And it was going to be the most important job that I would ever do. Every thing else I do is pretty window dressing. My other jobs, I’d give up in a heartbeat. Being a mum means every thing to me… they are my reasons. They are why I get up in the morning. They are why I fight. They make me a better me. They are my heart and soul. All of my life, I dreamed of having them. They were planned. I had to fight to have them. But had I been diagnosed sooner, no. My heart breaks into a billion shards, filled with pain and grief, every time I see how my disease affects them.
We all need to be aware. Knowledge is our best tool. It prepares us for all the unexpected we can face. After all, we live with a disease where one day we can be fine and the next, dead. It isn’t like cancer where we are told, “You are in stage 4 and have 1-6 months to live” or “We caught it early enough. With treatment, your chances of survival are 90%.” We need to make sure other people are aware. And one of the suckass parts of being aware, is that we have to face the dark side of this disease. We can control how we cope and deal. We cannot control how those closest to us cope and deal. We need to try our best to remember that, just like us, they are probably masking their own pains as well. We need to figure out how we are going to deal in the moments when those masks come off.
And for those of you reading this, who either want to support us or counsel us, just remember, this is one miniscule snapshot into the thousands of daily struggles, both emotional and physical, we and our families go through. I think it is especially important to remember that just as our disease is invisible, we also do a pretty good job masking the emotional parts, regardless of whether we cope well or not.
When we crack a joke, it is to hide the tears and cries going on within us. And sometimes, we may just be laughing and crying at the same time. Laugh with us. But remember, when we get serious and reach out, we are taking a big leap of faith. A lot of us have experienced people leaving as a result of our disease. Take your cues from us. Laugh when we laugh. Get serious when we get serious. Cry when we cry. And be flexible. Our needs may change from second to second, just as our symptoms can. Choosing to walk this road with us and be an emotional support for us means choosing quite a difficult path. You need to be flexible and roll with the punches.
And remember, even if we are ranting and raging, we really appreciate you being there.