Guilty of Feeling Good
Lupus really does a number on a person, both mentally and physically. When many of us learned we have this incurable disease, for some strange reason, we began feeling guilty. Either because we worry about loved ones, are unable to do something we were able to do in the past, or have children who still live at home, guilt seems to kick in hard.
Sometimes we feel guilty for what could be seen as crazy reasons. As I meet more and more warriors, one would think that by now, I would realize I’m not the only one feeling a certain way. I don’t usually talk about my really good days — the days when I wonder if I am in remission. Lupus has some pretty ugly symptoms. Many warriors are bedridden, on oxygen permanently, and have suffered from various surgeries. And lupus does indeed kill.
Knowing this causes me sometimes to feel guilty for feeling good. It is very strange to me to have moments when I almost feel like my old self (usually a few joints remind me that I am still battling).
Overall, on those days when I have minimal pain, I can take a full, deep breath without pain or a coughing fit, and I can walk across a room without getting winded. I even try to squeeze in a little exercise by cleaning or doing some slow dancing. But I don’t talk about it that much with others in the lupus community because I almost feel like it would be bragging.
Days like today, when I am eyeballing the pain meds, doing my best to take shallow breaths, and having a tough time walking without needing to sit every 15 steps, somehow seem more acceptable. I have often thought that I am the only crazy person who feels guilty for feeling good. Then, a few days ago, I was speaking to another warrior who said she had not joined any support groups because she didn’t think she was sick enough.
After believing for so long that probably only I felt this way, it was strange to hear someone else express the same guilty feelings. A person can find relief in that. I told her that I fully understood how she felt, but that joining these groups is not about “being really sick” as much as it is about having research partners and people who can relate to your bad (and good) days.
She, too, expressed relief about knowing she was not alone.
I now feel better about talking a bit more openly about the times I feel good, because I am pretty sure that she and I are not the only ones who feel guilty for having good days. I am coming to grips with talking about all aspects — the good, the bad, and the ugly — of this disease. It is always a strange sort of load off your mind when you realize that you are not alone and that it really is OK to talk about it.
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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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Christine M
I really appreciate your insightful blogging. This one hit home. I do have flares ,however , with, the right treatment I can go a month or more without a flare. Yes, I feel guilty when I feel good. Like you mentioned there are so many that suffer daily and have life threatening symptoms. Another source of guilt is the Rheumy who says "you aren't sick enough to really have Lupus". Remission or doing well? isn't that the goal? Thanks for all your hard work. Hugs and best wishes
Kellie McRae
Hi Christine, its kind of weird that to not feel bad all the time is the blessing that brings us guilt. I have been told that I am the healthiest lupus patient one of the doctors has ever seen. I will take that for the win column :-) We just have to do our best to realize, we didn't ask for the disease, nor did we ask for the way it treats us but I am grateful (in spite of the guilt) for the good days when they come because the bad days are.....well, bad days.
Paula
Hi Kellie,
I think it is important to write about the good days. It gives others hope.
Kellie McRae
Thank you Paula, It's good to know it gives others hope. that helps me feel less guilty :-)
Belinda
So strange that I Often wonder myself whether I still have Lupus due to days and sometimes months going by without having symptoms. I am 33 years of age and was diagnosed with Lupus at the age of 11, those were the tuff years, where my dad had to sit beside his little girl praying to take away her pain. Going in and out of hospital, from the one day being absolutely fine to the next day fighting for my life. No one would understand unless being in that position. Not sure if its the years of treatment and medication but think my Lupus is quite under control, hardly get flares but the times i do get its like a sign to re-asure me that i still have Lupus. I am a married women that still study and have the strength to fight the corporate business world for women empowerment by being high up on managerial level. I do feel guilty for being capable of doing all this whilst there is warriors struggling to make it day to day.
Kellie McRae
Belinda, I wish I could say I didn't know what it felt like to feel this guilt. It's weird that we feel bad for feeling good because we know others are suffereing. It just shows we at least have compassion and since we know this struggle is not easy, it makes it hard to feel 100% great about feeling good. Keep doing what you're doing lady, I'm so excited when I hear about people feeling good because in spite of the guilt, it also gives hope when we can share that there are days when we feel no pain and have good energy.