It's important to understand this illness if you know and love someone who has it. Lupus is complicated. It not only affects the person physically, but also emotionally, spiritually, and mentally, it cannot be cured and it can be quite dabilitating at times. For some it is more mild/moderate and for others it's severe. But regardless, we all deal with it's negative impacts on a daily basis.
Within the lupus community, there is a common complaint that I've noticed - and it can be not only frustrating but demoralizing to deal with - and that is lack of understanding and/or compassion from other people, and loved ones.
I do not personally come across this issue very often but I wanted to touch on this because it can be so devastating for others who are going through it.
First of all, if you have a loved one with lupus, no matter what your opinion is, if you are reading this, please take a break, do some research from medical articles and forums/blogs written by people who have it, and then come back to this. I suggest reading "the spoon theory" since it does a very good job of breaking everything down from a personal perspective, to someone who does not know the illness first hand.
This is a very complex illness that not only affects the sufferer but the people who care for them. A little more understanding goes a long way for all involved.
Imagine being in the shoes of someone with lupus, me for example: my day starts off with A LOT of pain, on a regular basis. When I try to move, my joints are stiff, my tendons crack, my hands, feet, ankles, knees and elbows are swollen. I usually try to loosen up in bed for 5 minutes by stretching and slowly moving, because if I don't, I will have horrible pain for the rest of the day. Showers are amazing.. I can loosen up a lot more and the water really takes care of the pain. But before I have the energy to even wash my hair, I have to take my meds first. And if I don't take them with a snack, I will get nauseated and won't keep them down. This means forcing myself to eat every morning, in pain, with no appetite. So, after my shower, if I'm not careful, I end up hurting my arms and hands and back by drying off, bending too much, and styling my hair without good body Mechanics (if I want it to look good that day. Sometimes I just don't care to go through the trouble.)
If all goes well then by this time my pain level decrease significantly and I can function pretty normal and do some housework, cook, walk the dogs, work out and do something fun, until a few hours later when I need to stop, rest for a minute, and take some advil or aspirin with something to coat my stomach before the pain gets horrific again. But sometimes the pain is so bad that it doesn't go away until the evening, and if I have work that day, it will get worse throughout the shift until I go home and collapse. I take 2400mg of ibuprofen on the regular, with my prescribed tramadol as needed.
That is your day to day life when you have lupus. Typical day! Now imagine doing that with working, school, and/or imagine also having kids! (God bless you moms with lupus out there!) and now imagine doing all that while in a huge flare, and having other health complications from the lupus, or even just having a common cold or virus. The fatigue and pain are already exhausting, but add those things to your day and you're fighting hard as hell just to function and get simple tasks done!
On top of that, flares and complications are just completely unpredictable. You never know when you're gonna be down for the count and completely effing useless.
By the way, this is quite dumbed down and sugarcoated because I'm not even going to get Into the hospitalizations, kidney problems, seizures and week long migraines I get.
NOW imagine going through all of that AND having people put you down, nag you, belittle you, neglect you or misunderstand you.
Luckily, the worst I have dealt with has been random people who throw idiotic comments at me once in a while like:
-"are you sure you have lupus? Are you sure it's not in your head?"
-"you're too young to look so sick and tired"
-"you've lost weight are you starving yourself?"
-"do you have an eating disorder?"
-"you take too many medications"
-"you're a health nut"
-"I wish I could sleep all day on my days off! My husband would yell at me"
-"you're always sick, it's always something with you"
-"maybe you're not eating enough/sleeping enough/(insert something else that implies it's you're fault)
-"why don't you just quit your job/dreams/goals/aspirations and go on disability?"
And the list goes on and on. But these people aren't close to me. Mostly acquaintances. I can't imagine my loved ones saying such things to me. It would break my heart.
BUT in retrospect, it goes go both ways. If you have lupus, it does not give you a free pass to make excuses and not at least try. It doesn't give you an excuse to lash out on your loved ones because they are also affected by this and have the right to get upset sometimes. If your loved one is putting in an effort, you need to be there for them as well. HELP EACH OTHER!
Imagine being a loved one or caregiver of someone with Lupus. For example, maybe your wife has lupus. You come home from a long day of work and the house is a mess, she hasn't showered, she didn't work today, and you haven't really spent quality time with her because she has been feeling very ill. You can't remember the last time you guys went on a date or even had an intimate night together. Yelling at her, belittling her, or blaming her is not going to help solve the problem, in fact, it going to make it much worse. The best thing to do in this situation, is talk. Tell her that you are tired and worn out as well, that you understand she is ill but you are also exhausted. Offer to do the dishes together. Cook together. Make it a team effort. And tell her that you miss spending time with her.
So to anyone reading this, I hope it gave you some perspective and a better understanding.
And remember, we have lupus but we are still people capable of many things, with a definite purpose in life. You have an illness, but you are NOT your illness.