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Do You Think It Is Harder To Accept A Diagnosis If You Are On The Mild End Of The Lupus Spectrum?

Do You Think It Is Harder To Accept A Diagnosis If You Are On The Mild End Of The Lupus Spectrum?

I was diagnosed in April 2017 and I think it has taken me almost 2 years to come to some type of acceptance. I don't have any organ involvement (thankfully). I've never had any hospital stays. You might say that the symptoms have been creeping up very slowly enough that I never really noticed them. Anyhow, I was exercising today and trying to keep up while being aware that the energy levels just weren't there today. I finally just started crying while trying to do the ab work. I'm not a… read more

A MyLupusTeam Member said:

I am struggling to believe that it's 'very likely' that I have lupus (the words of my rheumatologist) due to blood tests showing positive on three occasions now... I suffer with brain fog (nearly put the washing in the cooker yesterday!), mood swings, some aching muscles/joints, tiredness, heart palpitations, and get breathless walking the dog - but all of these could be due to my age (peri menopausal)! My biggest concern is that despite not ticking all the boxes for lupus, the rheumatologist says the blood tests are significant and adamant that I take medication and stay out of the sun to minimise the chance of progression to organ damage. On days where I'm feeling tired, depressed, tearful and overwhelmed I wonder whether it's related to my autoimmune condition/disease, whilst when im ok surely they are wrong, why do I need medication and I feel like a fraud!! So acceptance is hard no matter what stage of the disease you are at for differing reasons... For those whose lives have been changed dramatically through debilitating pain (my thoughts and prayers are with you...) to those of us who are fearful about what the illness may bring... My lupus team brings knowledge, hope and support for all us all 😍

posted almost 3 years ago
A MyLupusTeam Member said:

Wow @TabithaBroaden! I'm sorry to hear you are suffering with so much mental anguish! It is scary being diagnosed-but really and truly we are all waiting to die-it is part of living. Sounds corny, but take it one day at a time. Tell yourself every morning you wake up-I'm here and I'm going to make the most of today! Your mind set has so much to do with anxiety, panic and being afraid. I suffer from those issues as well. I believe that being positive is one of the best things you can do to help yourself. :) It takes time, but soon you'll find that the positive takes over and makes it harder for the negative to push thru! Hang in there and keep fighting the good fight! You are stronger than you think and lucky to be alive. :)

posted over 2 years ago
A MyLupusTeam Member said:

I note that I received when I was down...Blessings to all ❤️

posted almost 3 years ago
A MyLupusTeam Member said:

I was diagnosed in 2002 with mild end of Lupus. I hadnt even heard of it, so i continued on with my life and much like many of you, used motrin and tylenol to help. The next stage over the next couple of years was i can beat this, im not like everyone else, im gonna keep working, ill just make a few changes. As the disesse progressed, i was losing my life as i was living it and i sdjusted everything i could think of thinking, THIS will make it better. I dont know if i have TRULLY excepted whars going on with me. I do know im living someone elses life! I am dealing with severe depression anx im affraid, if i accept this, i accept i am dying, just waiting for the day. I have no organ shut downs, and blood work is always pretty good, but the limitations that have forced themselves into my life have debilitated me, mentally, physically, as well as emotionally

posted over 2 years ago
A MyLupusTeam Member said:

Absolutely. I haven't had any organ involvement or hospital stays either and some days i question if i have it at all and if other people think that too. It's hard, but it is what it is. Acceptance is always that first step. It's the moving forward part and allowing yourself treatmentand self care that is the hardest.

posted almost 3 years ago
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