Confusion- Not just a symptom

There are times when you will feel as if, for most of us, you are just not being heard or understood by Doctors. Okay, let me widen that out a bit to just people in general, but mainly Doctors. The days leading up, months really, to my finally getting diagnosed were not happy times. My regular doctor was just not hearing me out, no matter how many times I went to see him about the same issues. Then the second opinion I sought was not helpful either, beyond saying they really had no clue what was wrong with me. Honesty at that moment helped me pause and really just listen to the odd opinions of those around me. Well, to me they seemed odd. Who ever heard of Lupus? Not me.

It was the same way when I was struggling with my pain, body and chest. I really liked my Rheumy. She was super, but she just was not listening. Or maybe I just wasn’t being clear enough. Either way, it took me listening to the advice of HELPFUL forum replies, ie- people who actually read the whole of it and want to help you beyond saying you should go see a doctor. I get that they want me to see a doctor. “I did,” you may feel like crying, or in some cases yelling.

The issue may be YOU. It is not always others who are just not listening. Sometimes we are just not being heard because we are not being clear, or forceful enough. That may surprise some of you that you NEED to be clear and yet tactfully forceful about how you are feeling. If your doctor seems uncaring about your problems, make them more aware of it.

The worst doctor visit I ever had was when I went to see a specialist my Rheumy sent me to. The Specialist was unprofessional, having me wait over an hour, and remarking about it to another client just a few doors down. She even refused to listen to my symptom list, which my Rheumy very clearly told me to share with her, every part of it.

The woman treated me like I was some cry baby idiot/crazy person. In turn I never seen her again. I even went to the hospital and picked up my tests there so that I never had to so much as step foot into that other office. You are paying THEM. Not the other way around. You are coming to them for a service. Be nice, but be firm. You are the client. You do not need to accept bad treatment. For instance, the first thing she noted and wrote down was about my weight. It was clear she was seeing me as a fat person before I opened my mouth. Judgement is not what I pay you for! Plus, I have at least 3 medications that make me gain weight.

The above is a great example of a bad doctor. You do not need to deal with this. If they are really bad, get up and leave. We deserve better treatment, kindness, and COMPASSION!

Now, there are times your symptoms may be driving you batty. You may seem erratic, be constantly frustrated, and even jumpy. This is a good time to take a deep breath, re-asses things, and maybe make a real list of what your are dealing with. Call your doctor, ask them what they think you should do about it. If they don’t make time to speak to you, ask when you can. After 3 days, so long as they are actually working during that time, you should have been able to speak to them. If not, ask for one of the other partners or a referral.

Confusion about the way you are treated and if it is just you can be a fuzzy thing when you are freaking out over your symptoms. Confusion is a symptom, most times, related to just being a Lupie. Don’t give yourself a hard time about this. You did not do this to yourself. Be forgiving. While you are at it, spread some of that forgiveness to anyone whom you may have gotten mad at for not hearing you out. They don’t know what it’s like being you. Yes, they should be more considerate. That goes both ways.

Thank you for your time and remember to just try to breath through it, write every thing down, even minor. Insist that you are heard and seen by the right doctor.  You deserve it. ❤

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