Nobody Gets It
Sometimes I feel like a little old lady or a broken record when I hear myself saying my head hurts, or my back hurts, or my elbow hurts, or whatever else happens to be hurting at any given moment. I try not to do that because I'm sure it gets old. But the thing is, my boyfriend or the handful of other people I communicate with occasionally don't seem to understand how sick I really am because it's usually not apparent on the outside. I am never comfortable. If I said out loud everything that hurts every time it does I would never shut up. My boyfriend had no idea how many times I have to stop in the middle of something to catch my breathe or use my inhaler because he doesn't see it. I still have to carry heavy bags of groceries in, or move heavy things around, but if he knew how bad it hurts he would help me (I hope). I just doesn't get it because I have always pushed myself to do what needs to be done no matter how bad it hurts and he had gotten used to it I guess. I don't think he will ever understand, or anyone else either because to look at me, you wouldn't know there is anything wrong. Does anyone else ever notice that people don't think you are sick, or as sick as you feel, just because it doesn't show on the outside. And it's not just my body, it's my mind too. I don't even trust myself anymore not to do something stupid. A few hours ago I stopped at the convenience store and was in the car looking to see how much money I had. I pulled out six dollars and thought I put it back in my wallet but when I went to the register I couldn't find it. I went back out to the car to look for it and not there either. I type my purse apart again looking for it. I looked on the ground and it was nowhere to be found. Where did it go? I have no idea. How can I be so stupid and absent-minded that I can't even keep track of my money for two minutes? Another time, I lost a box that had $1000 in it for a week because I couldn't remember where I put it. How do you lose track of $1000? I don't trust my mind anymore -there's something wrong with it.
gentle hugs. I’m sorry it can take some time for your family to get it and sometimes they won’t 😕You are definitely not alone. The brain fog can be so overwhelming and then couple that with the stress of people not understanding can be frustrating.
This is a article about this very common symptom so know you aren’t alone in this
https://lupus.net/symptoms/brain-fog
I have felt and sometimes do feel the same way often like my mind plays tricks on me . I’ve had to try and give myself grace and take it so slow, carry sticky notes and always have a million alarms on my phone.
As far as family I write them letters for them to understand and I have completely stopped hiding when I’m not well. I don’t want to give them the wrong impression at all. Here’s a letter that I often pass on to my family that may not get it.
https://lupus.net/living/letter-friends-family
I know it’s so frustrating but hopefully you can speak with your doctor and see if they have any other suggestions you can try. ~Racquel~ team member
You sound like me. 😞🙏
, I'm sorry you don't have people in your day-to-day life that get your experience with Lupus. While it's not that same as having support in person, please know this community is full of people that "get it" and you'll never have to explain yourself here.
Gentle Hugs, Erin, Team Member.
I've felt like that so many times I lost count. To me sometimes my family either forgets or thinks I'm a superwoman. After my surgeries, strokes and rehab my husband and my daughter tried to keep me moving. So I do the cooking and cleaning the kitchen which it was perfect for a while. But unfortunately now my husband's health is not that good either so I'm taking care of a lot more. There are days that I feel can't keep up with all of it and nobody sees it either. But I keep it up because I don't want my daughter taking the whole load while she's trying to work and taking care of my granddaughter,her brother and us too. She's my hero though all of the crap we've been through. She takes care everything so I try not to complain about Cooking, cleaning and taking care of our pets. But sometimes I wish someone would say that I understand that you hurt and I appreciate you for doing everything you do every day. I understand and I'm sending you big hugs.
,
Being a caregiver and a patient is so very difficult.
It sounds like you are taking on quite a bit.
Make sure you set boundaries and take care off yourself.
I'm glad to hear you have a wonderfully supportive daughter to help you out.
I wish you and your family all the best, Doreen (Team Member)
OMG - shocked to read this because I felt like someone read my mind and put it in this post!! I feel exactly like that…. Lupus is a miserable disease- so hard to deal with, unpredictable and the worst part is, it never ends. It makes me want to cry…
, please know you are not alone here and members of this community get it. Living with Lupus IS hard, but I hope having a community like this one makes it just a tiny bit more manageable!
Best, Erin, Team Member.
