Letter to Family and Friends
Dear Family and Friends,
It’s me, your lupus warrior, giving my perspective as to what I need in my battle to beat lupus. I know it is hard for you to understand the fight of a lupus warrior. All the ups and downs can be confusing and scary. Therefore, I write this letter to explain what is needed.
I need to feel safe
First, I need to feel sheltered, protected, and cherished. Sometimes, my body is simply exhausted and it can be very overwhelming. I need you to say, “don’t try to do that, let me help you.” I desperately need to feel safe around you. To know that you have by back when I’m too weak to help myself. I also need to know that you feel that I am a blessing and not a burden. This makes me feel like you cherish my life with all its twists and turns that you may not even understand.
I need forgiveness
Second, I need to feel responsible, forgiven, part of a team, and incredible. I am aware of the latest research. I am reading and learning daily about all the ways a cure is in the works. Honestly, it hurts when someone minimizes how lupus can be cured. Statements like, “Just try this or that product to cure lupus," or "You need to work out and pray more.” It makes me feel like I am not responsible enough to advocate properly for my own care. If curing lupus was simple, we would all be cured. There’s no quick fix for lupus unfortunately and with all that is going on with me, I need you to be forgiving. I often have some guilt and shame for not being all that I used to be and your forgiveness when I can’t do really means a lot to me.
I need support
Finally, I need a friend that is able to encourage me, nurture me, respect me and help me to feel normal. Sometimes I have these waves of panic and fear. Since my quality of life has dramatically changed it increases anxiety for me. It can be very lonely dealing with lupus issues day to day. If your friendship can help to alleviate some of the loneliness with a visit or by making a meal, it does my heart good. Just having your respect knowing and understanding how hard I am trying beyond lupus makes a difference in how I fight daily. That respect makes me feel normal and a vital part of life itself.
What your support means
Your actions speak louder than your words. When you take the time to truly understand lupus and the things I may go through daily, without scrutiny or judgment. It makes my fight easier to handle. I know it is hard for you to accept my diagnosis and all the changes in my life. Trust me, it’s hard for me too. But, your support in helping me escape some of the harsh realities of lupus is important. I am in the fight for my life. Although I know this is my fight, it helps tremendously to know I have a friend who is willing and able to help me through.
Thanks in advance for helping me with what I need.
Your Lupus Warrior
Have you used biologic treatments to manage your lupus symptoms?