I haven't posted on this forum for a while now. I have been having a hard time with flares recently. Plus I've found that the added stress of having to "prove" to loved ones that I'm feeling ill is starting to take its toll on me. I have lupus, I'm not depressed.
When I was first diagnosed about 4 years ago, after a long long journey of back and forth and a range of "experts" trying to figure out what was wrong with me, one of the specialist's said to my husband that he thinks I'm depressed and this is "all in my head". I literally felt more traumatized trying to validate how I was feeling! i presented with associated neuro-pathy and constant numbness. This has continued to the day. The nerve pain is managed through the use of Cymbalta. And because I battle to sleep and battle pain and fevers, the doc had prescribed Seroquel that allows my body to completely shut down. This was prescribed by a neurologist and psychiatrist together with my RA. Ive been on these meds for four years now. I try not to take the meds for RA as it slow me mentally.
Just because I don't "look" sick, I'm sometimes told I'm lazy or that I should just get up and going. This stresses me even more. I'm already feeling awful physically, can't move,fever,pain, joint aches, no energy! and now I have the bonus of being asked : are you sure you aren't depressed? why don't you like going out?
Gosh I'm pulling my hair out! In one single move the doc has managed to take my lupus to something else. Whilst there's nothing wrong with being labelled, why would we be labelled incorrectly, with a diagnosis of depression etc? Why do we get labelled with this when docs just don't know whats happening? And how do you deal with the situation? And added stress. It pains to think that one day I may not be around and my kid has to perhaps deal with this illness. Breaks my heart.
I've also had some problems with people not believing in my illness, so I completely understand how frustrating it can be. I do, however, take medicine for anxiety since my diagnosis. When my doctor first recommended it, I was hesitant because I was unsure if I needed to be medicated for it, and I wasn't sure what people would think of me. My doctors have also made it very clear that if I feel like I'm depressed, to let them know immediately so they can help me. None of them have tried to tell me that I am depressed though. I have found that I need to stop worrying about what's going to happen in the future, because it just stresses me out more. I know sometimes this can be difficult, but taking it day by day really helps a lot. I've also found that when people don't believe me when I say I have lupus, that I need to turn to the people who do believe me and want to help, which includes other people I know with lupus or other autoimmune disorders. I have a cousin and an aunt who have lupus, which isn't ideal but it does help the three of us out a lot to know that we have each other. Please feel free to message me anytime, I will get back with you as soon as I can. If people don't believe the way you're feeling, don't give into them. They don't know how hard your body is working and the added stress will only make things worse.
I have l learned that what others think of me is their problem. If they think I should be able to do something I am unable to do, or something I choose not to do because of lack of energy, then it is their problem. If they choose to resent it, then it is their bodies that are being stressed by the resentment. I do what I can. Do I ever feel like I'm a waste of space and a burden? Yes I do and I cry and throw fits. I sometimes feel guilty because of my own expectations of myself that at times are unreasonable. The good thing here is that this gives me the choice not somebody else that has no idea what I'm going through the power over my emotions. I have to keep reminding myself that God will provide me with the energy and strength to do what He wants me to do, and in the end, that is all that matters.
Thanks so much for understanding. Its frustrating having to explain myself, so I try not to. And its even sadder when it comes from your near and dear. Its in my immediate environment so I cant just turn a deaf ear or not engage with my family. Its draining. I choose to focus on the good stuff. But I cant deny that this gets me down. And I do blame doctors for messing up patients one way or another by not understanding this disease or just admitting that they don't know it, and accept the limitation, instead of making up issues...
Thanks again for the offer, much appreciated! mdaniels3 said:
I've also had some problems with people not believing in my illness, so I completely understand how frustrating it can be. I do, however, take medicine for anxiety since my diagnosis. When my doctor first recommended it, I was hesitant because I was unsure if I needed to be medicated for it, and I wasn't sure what people would think of me. My doctors have also made it very clear that if I feel like I'm depressed, to let them know immediately so they can help me. None of them have tried to tell me that I am depressed though. I have found that I need to stop worrying about what's going to happen in the future, because it just stresses me out more. I know sometimes this can be difficult, but taking it day by day really helps a lot. I've also found that when people don't believe me when I say I have lupus, that I need to turn to the people who do believe me and want to help, which includes other people I know with lupus or other autoimmune disorders. I have a cousin and an aunt who have lupus, which isn't ideal but it does help the three of us out a lot to know that we have each other. Please feel free to message me anytime, I will get back with you as soon as I can. If people don't believe the way you're feeling, don't give into them. They don't know how hard your body is working and the added stress will only make things worse.
I'm happy to have that attitude with people who don't matter. But I cant do that with relationships that do matter. I dont have any other people to turn to, who believe in me, and thats sad. Because when Im ill and unable to make my choices known, these family members make choices for me. And they will inadvertently cause more harm than good.
I do live in hope that one day this disease will be understood.
Thanks so much for the sound advice :) Doggie said:
I have l learned that what others think of me is their problem. If they think I should be able to do something I am unable to do, or something I choose not to do because of lack of energy, then it is their problem. If they choose to resent it, then it is their bodies that are being stressed by the resentment. I do what I can. Do I ever feel like I'm a waste of space and a burden? Yes I do and I cry and throw fits. I sometimes feel guilty because of my own expectations of myself that at times are unreasonable. The good thing here is that this gives me the choice not somebody else that has no idea what I'm going through the power over my emotions. I have to keep reminding myself that God will provide me with the energy and strength to do what He wants me to do, and in the end, that is all that matters.