It never fails after a period of time where I have been doing better but relapse and have a few bad days, I get this question, “I thought you were getting better, what is going on? Why are you sick again?” I resist the urge to say something like, “Oh, yeah, I just wasn’t getting the attention I would like so I decided to MAKE myself ill so I could make your life a little bit more difficult.” Since I can’t really provide that answer (because someone would inevitably take it seriously) I thought I’d try and share a few of the misconceptions I’ve come across in the past few years.
First misconception: A chronic illness only lasts a few months at the most. You should have a trend of a typical illness; diagnosis, treatment, resolution, just stretched out a bit longer. “Chronic” is defined as a disease or syndrome lasting more than six months and can last your entire life time. There is no straight forward mechanism of the disease. It is as close to a rollercoaster life than anything else I have ever experienced in my life. One day I can feel great but the next I am not even able to get out of bed.
Second misconception: Can’t you just take some medicine and be fine? Society seems to believe that there is a pill for everything. There are exceptions to this but those mostly involved diseases with a higher death rate like cancer. I can’t help but think the reasoning there is because you can tell someone battling cancer is sick. Someone battling Lupus, even something more serious like Lupus nephritis, can look perfectly normal is you see them on the street. Yes, I take medication to prevent my body from attacking itself but there are side effects to deal with. My medication can make me nauseous, kill my appetite, and make me even more fatigued than the Lupus itself does. Since it dampens my immune system, taking the medication can make me more susceptible to illnesses. The same immune system that attacks my own tissue in the Lupus pathogenesis is the same immune system that protects me from all those viruses and bacterias that can make one ill. You can’t dampen one segment of the immune system independently.
Third misconception: The problem is really all in your head. If you “think” wellness, you will become well. It’s all in your attitude. These kind of people just blow my mind. If the problem is really in my head, then my blood work would not show antibodies appearing that shouldn’t be there. I would love to be able to “think” well and all of a sudden, everything is fine. No more pain in my muscles, no more fatigue so bad I can barely drive home. I would get to spend time with my kids doing all the things they love doing instead of making them each pick a weekend and trade off doing things because Mom gets worn out too quickly to do it all. If it was all in my head, I wouldn’t have given up rolling over into the PhD program after finishing the Master’s program. No one capable of going on would decide not too unless there was a mitigating factor. For me, that mitigating factor is my family. If I were alone; no kids, no spouse, no parents left, I might would take the chance because there would be nothing else vying for my time. But I do have kids, a husband and a father around and I love them with everything I have. I have missed so much time with them because I was trying to conserve my energy for work and that is like a dagger in my heart. I am so ready to be able to give them the attention they deserve.
Fourth misconception: “I know exactly how you feel. I am so tired and my back does kind of hurt.” Um, I don’t think so. I get this just about every day. People will ask me how I’m feeling and when I actually try to tell them (because I’m naive enough to think they wouldn’t ask if they didn’t really want to know) I don’t even get my entire sentence out until they try to tell me how they have had this little twitch somewhere that has really given them trouble. Makes me want to absolutely slap them. When they have had to change just about every aspect of their life because of their fatigue or their pain, then they can talk to me and maybe we can commisserate. When they have to plan events weeks in advance so they can ensure they get enough rest for several days before to make it through what ever it is, then we can talk. When you have to start ensuring at least 10 hours of sleep a night to stay semi-functional and still need to throw in a nap here and there, then we can talk.
I don’t want to sound like a “poor me” person either. I feel very blessed in my life. I have a wonderful husband who I can call and say “I need to come home and go straight to bed. Please deal with the kids tonight” and he will. I have children who have seen me struggle though the years and understand that Mom is sick and has her ups and downs. They are always ready with gentle hugs. I have a college freshman that will fight to the death for me in any situation. (And she has nearly pounded her little sisters before when they wouldn’t get it quick enough that Mom has had enough.) I know I am blessed by having a great team of doctors with whom I communicate very well. I have a support system most would die for. But I still feel like I deserve to have a few moments of what I like to refer to as a ‘why me’ moment. I don’t think I would be human if I didn’t occassionally stop and feel this way.
Just this week my husband and I found out there was one more thing in our lives now where we will have to adjust to this disease that I live with. Finding this out just tore me to pieces. It was one of the few times I actually just cut loose and lost it for a while. It took about 30 minutes for me to get it together a bit and I’m still really pissed off about the whole thing. I saw my counselor Tuesday afternoon and luckily she told me it was okay to be angry, just to not get stuck there. Part of the reason I wrote this blog is to help me NOT get stuck here. I’m trying to release my frustration. I don’t really know yet if its working but I posted a much shorter version of this on my facebook page last night and slept like a baby for the first time in two weeks. (One of the startling things is that despite my constant fatigue, I don’t generally sleep well since I wake up in pain several times a night.)
So please excuse the diversions but I think everyone needs to understand that there is no standard pathway for the way the “invisible illnesses” will proceed. One day I might seem fine (and even then I can almost guarantee that I’m not “fine”) and the next day I will wake up and not be able to even crawl out of bed. That is just the way it is and there is not much I can do about it but hope that eventually the treatment will start working and I will feel better for a while. And that is the thought I’m going to leave everyone with.
Until next time….