I have lived with lupus for 19 years now. When I look back at my journey, I feel so many different things like loneliness, heartache, fear, helplessness, anxiety, loss and so much more.
Together with my friends and family, I am able to laugh at some of my adventures. Humour has been the primary way for me to hold it together. Somethings that have happened to me are too heavy to carry without humor. For example, one day I went to bed and woke up blind for three whole months! I didn’t even know how to process that, so I made a moving-on plan and used humor to survive. I am used to getting bad news from the doctors, school, employers, hospital and such but I tell myself that I need to keep moving forward.
In 2018, for example, I was so depressed that I found myself planning suicide. The stress of managing my health was just too much for me and I was surrounded by so much darkness. The best thing I did for myself was to get professional help. As I write, I have been stuck in bed since December because I woke up one day and couldn’t walk. I won’t go too much into that, but it has been a rough couple of months. Actually, now that I think about it, 2020 so far has proved to be a very heavy year for everyone hasn’t it?
Reflecting on 2020 so far for me, this is what I have come up with:
For one, I now understand why those fighting lupus often prefer to be called Lupus Warriors. No matter how many times and different ways it tries to leave me in darkness, it will not win! My family and friends continue to believe in me and that helps me to continue my journey as a warrior every time. Also, I have learned that therapy is so important to keep my heart and mind safe. The voices that wanted to lead me into darkness have been silenced! I am so grateful for that.
I have also accepted that I succeed at my own pace and in my own way. For example, it took me six years to finish my undergraduate degree, and now I am doing my master’s. It may not always turn out in the way I expect, but I get to my destination all the same. Recreating my own path to achieve my goals is OK. I do this over and over again now and I don’t feel as hurt and discouraged as I did before. I keep moving forward. Don’t me wrong, I may cry over it at times, but I don’t lose hope.
People will sometimes tell you that you can’t do this or that and lupus living may reinforce that message. But I feel it has taken on a bigger challenge in us than it can handle. We have our community, friends and family who support us in every step, and our inner strength and resilience are even stronger. Educating those around us also helps them have a better understanding of our journey. To be honest, it’s often hard for them too, but so many of them have our back in this journey.
My roommate (lupus) looks at me and assumes I have been beaten. But looking back again, I remember that when I was 15, they told me they weren’t sure I would make it 30, and I vowed to prove them wrong. Look at me now, I am 33! You (roommate) want me to be in darkness because I’m in bed? Just to be clear, I can work, study and have fun from my bed! Now I have new hobbies too, like writing. It helps in more ways than I thought it could. It makes me feel like I have lifted a heavy load off me!
So, for anyone who feels like the darkness is consuming you, please remember you have a community of warriors who are going through this journey with you. We have your back and we see your courage. You are not alone. Now as I write this, I have to revise what I said before about what I see when I look back on my journey… all I see now is a fighter who keeps on winning with a great support system cheering her on, and I love it!
Getty image by ChristinLola.