Fifteen years ago a huge bomb was dropped on my life – at least that is what it felt like at the time. I had been suffering for a few months with literally no energy and then my toes started to turn purple and get ulcers and lesions on them. I then started to lose my toe nails due to a lack of circulation. After numerous doctor visits and tests, I was sent to a rheumatologist who diagnosed me with Systemic Lupus.
I fought the diagnosis with everything I had. There was no way I was going to let this disease change my life or my plans. Forget that! But I found the harder I fought the sicker I became.
I continued to teach full time despite being exhausted and sick. I was suffering from denial. As with most things, you have to go through a grieving process, but I wasn’t even allowing myself to admit anything had changed. I was a new wife, a step mother and a full time teacher. Then tragically, I lost a baby and was told that it was risky and even dangerous to try to bring a child to term. Also, if we continued to try there was a possibility that the baby or I could die or both of us. That was all my husband Ray needed to hear to take having a family off the table. I had always seen babies in my future, and now my world really seemed to drop out from under me. I spiralled into a major depression and took my anger out at the world and everyone around me.
Lupus is treated most commonly with steroids which very often cause side effects such as weight gain and moods swings. Those closest to me were scared of what they would wake up to the next day – a happy person ready to take on the world, or a sick, depressed woman who could barely drag herself out of bed because of the pain. Ray finally sat me down and told me I have to stop working and start looking out for myself. So, now here I was on “sick leave” trying to cope with this new life I had not at all planned on having.
So, with the help of doctors, friends, family and a lot of prayer, I came to learn that accepting the illness did not mean that I was resigning myself to a lesser life. I came to realize that in accepting I had to make changes and that I was still brave, not weak or pathetic. I also came to realize that in having this disease I was learning more about who I was more than ever before.
I have learned how very important it is to listen to your body. Your body will always let you know when you need something. You just have to learn to listen. Now when I feel pain or exhaustion I slow down. I know what a flare up feels like and rather than waiting until I am really sick, I try to deal with the symptoms as the disease rears its ugly head.
I have also learned what is really important in life. Is it material possessions and a higher standard of living or time well spent with family and friends? I think we all know the answer to that question. I believe it is important for all of us to be kind to ourselves. I spent so many years angry at myself and feeling guilty, weak and less than. We all need a sense of purpose, whether it is from work, volunteering or being a good parent. It doesn’t matter what you do as long as you are living your life with purpose the world is a better place.
My disease will always be a part of my life. Rather than looking at it as my enemy I have learned to look at it as my lifelong companion. Perhaps in the future a cure will be found. But the fact remains that this disease has been a type of blessing in my life and has taught me far more than it has taken away. I can honestly say Lupus, as much as I have hated and fought it, has made me a better person.