Helpless, Hopeless — and Refusing to Give Up

Helpless, Hopeless — and Refusing to Give Up


I believe there is a time and place for everything, but to be honest, sometimes battling lupus leaves me wondering what time and place I fit into. Many of us with lupus 
are young women who no longer can work outside of the home. For those of us with young families, there often are feelings of guilt and helplessness. It can be difficult to lead a family when you don’t have the energy to do things with them, or attend events in which they may be taking part.  

My children are adults, so I have fewer family-oriented things to take up my time. I wander through life asking, “What now?” No work to go to, no kids to tend to – where does this leave someone like me? Work was a place not only where I could go and feel useful, but also allowed for social interaction.

Some of us are bedridden and feel isolated because there are not many who understand what we are  dealing with. Sometimes feeling misunderstood can cause us to become even more disengaged with those around us. That is not because we don’t want to be around others, but because we start to see them looking for other places to be. So, we run from them to save face because we recognize they are in retreat mode. When you spend the vast majority of your time at home or at the doctors, what you have to talk about becomes limited. Often, healthy people can’t relate this experience, and may not want to hear about it.

Battling lupus is hard enough, but adding feelings of loneliness can be very difficult. I push myself to go out at least once a week. I try to interact in a social manner, even if it leaves me feeling a bit fatigued. I need to connect with other people for my sanity, and I need to be around people who are not in the same boat as me.

I have an online business, so I host a weekly group for women who also have online businesses. This helps me short-circuit some of the lonely feelings. It also helps keep me from feeling anger, as I’ve noticed that the more time I spend alone, the angrier I feel. I am not sure why, but I do.

There are days when I still question what I’m doing, why am I doing it, and how I can feel vital to my community? I spend so much time online, but I have come to realize there is nothing quite like interacting with a real person. A conversation where you are looking someone in the eye and hearing their laughter is so much more fulfilling than reading “LOL” on a screen.

Lupus is not the easiest thing to deal with physically, and it also does a number on your spiritually and emotional health. I am fighting on more fronts than most realize, but I am doing my best not to allow lupus a foothold into much. Going out can take some serious determination on my part; I am starting to need to take the weekends to recover from my outings. To me, it is worth it because if I allow lupus to keep me in, I will become an angry recluse, and this is the direct opposite of my natural personality.

I just refuse to give up, or give in to feeling helpless and hopeless.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

6 comments

  1. Eddie Phillips says:

    Hi Kellie

    Another powerful and inciteful blog.

    I think the other thing that is hard for Warriors and Carers is that a friend or family member may know a couple of people who have Lupus, yet still cannot understand why they don’t have full blow fatigue symptoms and you do. They don’t get that it affects everyone in different ways and this can cause break ups which then increases the feeling of loneliness.

    We have recently had this happen with Julie’s sister and it is not going to get fixed, it has also had a ripple effect with some people in the community as they are her friends. At first it was hard for Julie to even contemplate going out into town, but she has overcome this and we are getting on with our lives with friends that understand. It can be hard but this is what Warriors have to do.

    Oh and how is the head, not itching too much is it, at least you wont get a head cold over there…….lol (sorry you cannot see me laughing).

    • Kellie McRae says:

      Hey Eddie, my little dome is cold! lol It does seem that people want to put us all in one box. We don’t experience this disease the same and that’s the part that is so hard for us, our families as well as medical professionals. I’ve just come to realize that those that don’t understand, it’s ok but if they can’t find compassion then I just have to hug them and say goodbye. We have enough to deal with and having people bring us their expectations and then treat us as if we failed them is not something else that should be on our plates. Self care is difficult because it comes with a lot of guilt but we must care for ourselves and whoever can’t support us in that…well, they should be wished well.

  2. Rob O'Sullivan says:

    Hi Kellie, your article echoes the attitude, thoughts and lived experience of my late wife Ingrid who battled Lupus for 46 years. Believe me, just by being who you are and not letting this insidious disease define you, you are making a huge difference in your own life and in that of others (even if they don’t admit or realise it). Part of Ingrid’s legacy is that she inspired so many with her tenacity and courage living with an adversity that just doesn’t let up. You are doing the same and I encourage you, as you say to never give up. You are neither helpless or hopeless. Keep on Kellie….

    • Kellie McRae says:

      I appreciate the push forward Rob. I know that living with someone for so long that battled this disease, you know what we go through. Trying to get to know the new person that you have become is difficult some days but we muddle through. Some of what I have learned about the new me is pretty cool and some of it, I’d like to toss in the trash lol I’m finding my strength is sometimes in just taking a break and knowing when to do that. I am sure you miss Ingrid, she really sounds like she was an amazing person. Its funny how our suffering helps others to realize that life is precious and that the worst thing we can do is waste it.

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