About thirteen years ago I was back in college in the hopes of changing careers. I was working two part time jobs, helping to take care of my ailing mother and was participating in a very demanding internship. Frequently I found myself battling one infection or another. I was exhausted, achy, and often feverish. I just didn’t feel well. I reasoned that no one would feel well with my schedule and looked forward to finishing my program and getting into a less hectic routine. Eventually, I did get to that regular routine but the well being I thought would come with it simply did not come.
Numerous visits to the doctor and countless prescriptions later, I dragged myself in one more time. This time I wore no make up. My doctor walked into the room and asked me how long the rash on my face had been there. I was surprised. I knew my face was red and that it hadn’t always been that way, but I hadn’t thought of it as a rash and I couldn’t really remember when I first noticed it. As he looked through my very thick file he suggested I make an appointment with a rheumatologist, as he was concerned my problems were autoimmune. Approximately two months later I made my first appointment with the doctor my mother had been seeing. After a rather lengthy exam, going over my records he had received from my primary doctor and getting the results of my blood work he had a diagnosis. I had lupus.
Since my diagnosis my life seems to be centered on this disease. Medication is a primary focus of my day. Morning and night I take ten pills. Some need to be on an empty stomach, others need food. This means I need a full two hours to take all of them. Sunshine has become my enemy. Most of my medication carries a warning to not spend extended periods of time in the sun. I have learned by experience how important it is to heed this warning. A day on the beach is not worth an agonizing night of nausea and vomiting. Then there is the expense. Even with insurance, the medication is expensive and has to be figured into my monthly budget. This means forgoing many enjoyable activities so as to purchase the medication that keeps me functioning.
Fatigue is a huge issue for me. Lupus zaps your strength and often leaves you with painful joints and an overall flu-like feeling. As a single woman, I have to support myself. I have a demanding job in the healthcare field at a hospital with a very strict attendance policy. While I have many days I am exhausted and need to rest, I have to push forward and go to work. On one hand, I think it may be good for me. It keeps me moving and helps me to avoid the urge to give up. On the other hand, it often means I push on and extend that flu-like feeling. Since I cannot miss work, I forfeit outings with friends and family so that I can recuperate.
Those missed outings pose a whole new problem. Although my friends and family are fully aware of the fact I have lupus, with the exception of the red “mask” (which I cover with make up), I look fine. No one can tell I am sick or that I feel poorly. It’s not that I want to look sick, but because I look fine people forget that I am dealing with this disease or they feel I’m giving in to it or exaggerating the symptoms. For someone who does not live with this, it is hard to imagine feeling so exhausted and so sickly so often. Many of my relationships have suffered, as a result.
This all leads to depression. I think anyone that deals with chronic pain or a long-standing illness has to deal with depression. There is a sense that your life no longer fully belongs to you. You have lost a great deal of control. Far too many choices are tied up in managing this disease so that you can function at the most basic levels. There are support groups out there and I have tried being a part of them. Sometimes it has been helpful. Other times I think we feed on each other’s depression rather than being a support.
I know that I am fortunate in many ways. Lupus has not disabled me as it has many others. I am still able to support myself in a career I enjoy. Although they do not always understand, my friends and family are there when the illness takes me to a point where I need help. I have a great rheumatologist who listens and is as determined as I am to make sure I am never disabled by this disease. I have a great faith in God and I know He has given me strength to deal with my illness. Ultimately, I know many suffer far worse.