Help! I have 3 AI diseases including Lupus. I was diagnosed 2 1/2 yrs. ago at age 71, after searching for a diagnosis for about 18 yrs. Recently, Orthostatic Tachycardia and Gastropheresis have been added to the list. Add my name to those experiencing fatigue. (I DO believe you)
For most of my adult life I've had Chronic Depression and Anxiety that was treated but probably not controlled. I don't remember much about those years. I realize all this sounds like I am a hypochondriac, or maybe… read more
It sounds like you have fallen victim to medical gaslighting. It's the only reason to feel the need to invaldate yourself in your own post by saying you know you must sound like a hypochondriac for having multiple AI diseases. Most people with lupus have other comorbidities. Anyone who tries to convince you otherwise is ableist. It might be ableism fueled by ignorance, but when it comes to doctors it's not ignorance. It's just hateful. We live in an ableist society. Capitalism doesn't work if people feel worthy without working, so we are made to feel unworthy and often less than human. You sound like you're already pushing yourself too much and being too hard on yourself. Everyone else is going to subject you to enough ableism. It doesn't help to internalize it and subject yourself to the same. I have been where you are, and the problem was a lack of good, healthy relationships and therefore a lack of the sort of support you need. My suggestion would be to stop giving so much time and energy to people who make you feel like you aren't good enough and start focusing more on self-love and self-care. This most definitely includes resting without beatimg yourself up over the fact that you need it. You don't need the approval of people who shame you just for existing with a disability. I do understand that you may want to make your children an exception to this rule, and that is fair. When it comes to them I think it may be a good idea to find reliable resources that you feel will better educate them on what you're going through. This should include a combination of data from a medical standpoint as well as others who live with what you're living with. It's also always completely acceptable to say "I'm done trying to convince you when you clearly aren't willing to listen," and "whether you believe me or not doesn't change that... (I need rest, I can't lift that, I'm not feeling up to that, etc. - general 'I need'/'I can't' statements). Remember that reality doesn't change based on others beliefs. If you're too sick to do something you're too sick to do it, and that's okay. Other than that you should definitely be working with doctors to treat your conditions/diseases/etc. I recommend researching specialists online and reading patient reviews. Doctors with good reputations are less likely to be ableist/discriminatory.
I am sorry that you have had to go through so much. It is hard enough to go through life with medical problems like lupus but one thing that I have learned over the years is that " what someone says or does it's not really the issue. The issue is how we react to the situation. " we need to love ourselves and continue to do our very best with the circumstances that we have. It sounds as if you are trying very hard to do that. And that is very commendable! Hang in there, and remember that we all care in this forum 😀
I feel blessed to have you praying. Thank you. I watched TV earlier and heard the phrase, "Keep praying".
Hi! I completely get it. Years ago, when I was diagnosed with Hashimotos thyroiditis, undifferentiated connective tissue disease (I have basically features of lupus and RA) and fibromyalgia, myosiitis, sacroilitis, and had to have neck surgery, I was very sick for a few years and did not work full-time...but even though my parents are a physician and an RN, there were times I felt they didn't believe me, or thought I was crazy. That is VERY HARD. Eventually, they have realized everything is real...because it doesn't go away...ever. But maybe sending your kids a hand- written letter, explaining what you have and how it affects you and daily life. And that you miss and need them. Even the psychological benefit would help your physical well-being. I would try that...a very honest and explanatory letter to each individual kid. Maybe ask them to please come and see you and support you, like go for a walk with you!! Walking is my number one thing. So sorry you are having a hard time and I hope it gets better soon!! I am also having a very difficult time with extreme daytime fatigue and PAIN in my back, and joints...and muscles...it is hard to get through the day! I completely understand and send hugs and prayers
I deal with this all the time my own blood family said well if you become to much to handle we will put you in the nursing home . Loard knows you got every disease in the book . Get off your lazy ass and get a job ain't nobody ganna water it down for you . When you die I get 50 grand and a new house . I was 19 in icu my death date was october 2014. I'm made it to 27. My best was never good enough I go to a private military school . I'm a white collar . I'm still not enough . I have four of the hardest majors in the world. I always did without to buy my family gifts . I thought they love me more if I did. But at the end of the day I got tired of there garbage. I told myself my blood family has now basically but it me or them . So I choose me . When I broke my back and went missing my own sister never came looking for me . I laid there until someone found me I am totally deaf amd was partially unconscious. A group of teenagers saved my life . The called 911. A military family that I claim to be adopted to but not officially got to the hospital and realized I couldnt walk. The veterbres in my back had been cracked. I realized it's me or them . If I'm hurt no one of my own blood came looking for me . Now my biological grandparents that learned of the wrecks came . They had communications with other people. But those who didnt care was on moms side . They said all the hurtful stuff . I was always the top everything in high school, test, champion, always top it wasn't enough . So I dont talk to moms side anymore . I live with the military families that allow me to stay . In return I help the military and his sick wife . I was so depressed like what's the point of being here. So I told myself it's me or them . Survival of the fittest kinda like the African wilderness. Many people thought I was making up stuff about being sick all the time . Got tired of it . So I drew the line . Whenever me and my health goes down i let them call the ambulance, i let them take me to the hospital , I let them deal with 48 seziures in 7 days , I could go on but you get the point . Sometimes the best thing you can do is nothing at all . People know I will tell them to put some polarized sunglasses on and look the other way .
I know that's mean but where I'm at its survival of the fittest . You do for all bit when you need them where are they ? This site has shown more suppourt than my own blood .
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