Giving a Voice to an Invisible Illness: Part 2

You can read part 1 to this post here. You can also read similar posts here, and here.

Do you ever feel scared? If so, what about specifically?

It’s scary when I hear about Lupus sufferers experiencing damage to major organs as a result of a flare. Chemotherapy treatments for severe symptoms, the reality of this incurable disease becoming fatal and the risks involved with pregnancy. Would I have complications? Would I be able to handle the inevitable exhaustion of caring for a newborn? I worry about my husband having to take care of me more than he already does and a baby. Will I have to reevaluate my career in teaching and eventually leave the profession because the responsibilities and stress take a toll on my body?

 What do you want people to know about you, and your illness?

She sighs

Good mornings may turn into rough afternoons, and evenings as symptoms are sometimes unpredictable. I’m healthiest when I choose activities carefully and pace myself.
It’s sometimes lonely because I feel people just don’t understand what Lupus is or what it’s like to live with this chronic illness. I don’t get to live my life the way that I want to.

I wish people could validate what I’m going through and knew that I’m fighting harder than they realize. It’s hard for me to articulate what I feel or need because I know I usually look fine on the outside. They have no idea that I go home after a long workday completely drained of energy and utterly exhausted. I’m often unable to enjoy life after work or on the weekends because my body needs rest.

I don’t get to live my life the way that I want to.

Lupus sometimes forces me out of social events. I have to explain to people that I can’t take part in a party or celebration. Having to reject requests to spend time with others due to my health always brings along some sadness and guilt. I don’t want people to get offended or annoyed, but I get tired of explaining my issues to others. However, I’ve also learned that if I am to expect a broader understanding from those around me, it’s important to honestly vocalize what I’m going through so others can empathize.
I also don’t want to burden people. I feel bad and push myself because I don’t want people to think I’m taking advantage of them. For example, after Nadir’s baby showerHosted a baby shower for our sister my foot was hurting really bad and I was feeling fatigued. Sean asked, “What would you do if you could get up right now?” I appreciated his willingness to help, but felt obligated to limp across the room and start cleaning. I struggle with not wanting to feel useless. It’s important for me to still feel useful. I need to feel like I’m still serving a purpose.

How can people be most helpful?

Encouraging words. If there’s something physically to be done while they’re around. Motions around the home.
It’s easy for people to forget because I try to look good on the outside.

How does having lupus affect your future?

Nem: I don’t know if we’re ever going to start a family. I’m getting older, and to change the dynamic of our family is scary. Would Sean end up caring for our child? The new normal requires that I keep up with medications, and pace myself. I’m not supposed to overexert myself.. I need to get enough sleep. It definitey restricts me.

Sean: You know, it’s kind of a lose, lose situation. Either we don’t have kids and later regret it, or we have kids and risk Nem’s health. It’s why for so long we keep avoiding the subject.

What have you learned?

I have so much more compassion and understanding for people living with a chronic illness or other health issues. I don’t always feel strong and courageous, but I hope to inspire others with my story. Raising awareness and knowledge empowers me and gives me a voice!
I’ve always been pretty self sufficient, so it’s been hard, but I’m learning that it’s ok to accept love and compassion from those who care enough to ask me how I’m doing. I deserve the support, sympathy and help that others offer without feeling any guilt.

I’ve become more educated about the illness and I’m learning to listen to my body so I guess you could say I’ve found a new normal which reduces some of my fears. My quality of life has drastically changed because of Lupus, but it’s all about perspective! Although I have physical limitations at times, I will probably always have to take a bunch of medications, and experience emotional ups and downs.

I’ve learned to value the blessings in my life so much more now! My faith and the incredible support system I have in my family and friends, keeps me going and I’m so grateful! God still has a plan and purpose for me and it is good! I try to embrace life one day at a time and not let setbacks hinder me from dreaming and setting goals. Faith has always been my life’s anchor and I know that God is STILL in control, even when I feel like my body and circumstances are out of control.