No Comfort from the Comforter
When you get the news that your health will forever be in the toilet, I can assure you that you have to deal with more than just the diagnosis. You find yourself working emotionally, spiritually and physically within new confines. At any given time in our lives, we have to reconcile things with one or more of these. It is rare, in my opinion, to have to contend with all three at the same time. But it happens. Life issues us some serious challenges and during those times, all three will come into question.
Often the physical aspect of those challenges are just feeling that you don’t have the will to move, but you do have the strength to make it happen. Heartbreak comes to mind. You just want to stay in bed, but you CAN move, you just don’t want to. With lupus, you can want to, but sometimes you honestly don’t have the strength, which taps into your emotions. “I’m young, I can’t believe my body refuses to move, to constantly hurt, to rebel.” Then comes the spiritual aspect of doing your best to will a good attitude, the belief that you will be better and there is a reason for this.
I have shared in other posts that I believe in a higher power. But I will be honest: I don’t find any comfort in a lot of what is said about the existence of such a power. I look at how the universe works, and it would be arrogant in my mind to say that there isn’t something bigger than us; but the names for these powers have never really resonated with me in the normal sense. Whenever I have had challenges in my life, someone comes along with advice from these higher powers. I have been told to find comfort in the Comforter. Well, that helps if you are speaking about bedding, which is quite cozy when my body hurts and absorbs my tears. The spiritual comforter does not comfort me. I am sitting alone, crying into the abyss, and there is no comfort there. I hear things like you “are never alone,” yet I am and I feel alone, too. I hear things like, “you will never be given what you can’t handle,” “God will never leave nor forsake you,” “by his stripes you are healed” and much more. Please don’t misunderstand me. Again, I believe in a higher power, but some of this stuff is just crap. I am not healed, I am alone and I am not comforted. These words annoy me greatly. If you want to comfort me, I need the wording to be closer to where I live on Earth.
When I pray, they are usually prayers of gratitude, and I do my best to have a positive attitude. When I ask for things that don’t pan out, I am met with “well, it wasn’t the will of God.” Whatever happened to “ask and ye shall receive?”
When I meditate, I focus on my body, mind and spirit being as healthy as possible. But even as a child, when I asked questions about the higher power, I was told “you don’t question God.” So this feeling is not new, I have just never shared it before. Primarily because people love to argue about how someone else believes. I am not looking for an argument, but I am looking for people to please stop giving me heavenly advice. I live on Earth. When I move to heaven, then that will be relevant. But for now, I find no comfort in it at all.
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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.
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Comments
Latisha Harrison
As I this, I am in so much pain that it is really hard to have faith in the "higher power". Was it God's will that we should suffer from lupus? Or that I be homeless for the last 3 1/2 years? WTF? Trying hard to stay positive, but on days like today it's nearly impossible. I know EXACTLY how you feel. Now I'm gonna go climb back under my comforter, with an ice pack and and a good book(if I can hold it). Have a great day, Ms. Hurricane. You are my hero.
Kellie McRae
If only we had any of those answers Latisha! I know we all have a reason for being, I believe that, but for being ill, for being in pain...I am clueless. I hope you feel better and find some relief.
Eddie Phillips
Hi Kellie, oh I feel ya girl.
I am not religious and I only believe in one power - me. However, I do respect other peoples beliefs as this provides them with comfort.
I have to admit to rolling my eyes when I hear comments such as these.
As far as down to earth comfort goes, cuddling up with Julie in bed is all it takes for her.
I am sending you hugs to try and comfort you down here on the mortal plain and they are available whenever you need them.
Eddie
Kellie McRae
Hey there Eddie, I hope you are recovering well from your hip surgery. I do believe in a higher power because there is so much beauty that man didn't create but so much of what I think we have been told as far as spiritual beliefs is a crock and like you, I respect others rights to believe what they want, I just needed to go on record because so many of my messages are filled with scripture and words such at the ones I shared. I know people mean well so I usually say thank you but after a while I'm thinking...enough. People need people and there is a reason for that. I'm open to all the hugs, they are warm and cozy lol Thanks for the offer! Please tell Julie I said hello :-)
Nan
Yes, people need people and the church needs people to be Christ's hands and feet on earth. Before lupus, I said those same things. After lupus, those words were hollow and made me mad. Overtime, I've learned that I used those words thinking they helped and when I didn't know what else to do. Maybe I didn't want to do anything else. Now when someone is hurting, I tell them, "I am so sorry you are feeling terrible. How can I help you?" Being connected to others so there is someone who knows to ask about you is important and extremely hard for us lupus folks because it's so hard to participate in the world. I don't have an easy answer. People need people willing to lend a hand, their heart, give hugs, sit quietly with them sometimes. Maybe the answer is we all need a good friend.
Kellie McRae
Hi Nan, Isn't it interesting how getting ill has offered us a different perspective? I agree with you that we often offer up words from heaven when we don't know how to express ourselves here on earth per se. I love what you have now changed your words of comfort to. I think we should share these words with those who have no clue what they should say to people who are grieving. Thank you for commenting and sharing.
Nan
As much as I hate lupus, I think I've become a better person for it. Anyway, I hope so. For sure, it has made me aware of how precious and fragile life is.
Kellie McRae
You and I are singing from the same songbook Nan. I agree that lupus has definitely given me a deeper perspective of the things around me. A different appreciation so I am no longer angry that I have it. I wish I could do something with the high pain days...toss them in the garbage or burn them lol but they have taught me a lot about life for sure.
Eleanor
I'm realizing that people don't often know what to say or how to say it. As much as they may try to understand and be supportive it's impossible unless they have walked in our shoes. I do, however, try to be compassionate and understanding in the face of others ignorance or intolerance. By no fault of their own, they just can't fully understand. I couldn't fully understand my disease until I was in the midst of it by no choice of my own. I think with a little patience and positivity we can educate others about this disease while showing them what a day in our lives is like and teach them compassion and empathy.
Kellie McRae
I totally agree Eleanor, I did another article where I talked about the difference between understanding and compassion. I shared exactly what you have here. Unless you have walked in those shoes, understanding is difficult. I do my best, much like you to bring awareness but sometimes I will admit, I do the deep sigh and the eyeroll at times. It's usually with the people who have decided they KNOW how to fix me, diet, exercise, etc. Those folks sometimes cannot be taught because they have already decided they know. For everyone else, education can definitely benefit them.