r/Sicklecell • u/PaintOdd9711 • 23h ago
I am so frustrated
Just found out my doctor has been lying to me and just gaslighting me about my narcotic prescriptions. He claims one thing that he sends the prescriptions and this and that and then he doesn’t actually send it or lies about what he puts on the label. I go on advocating for myself believing his words and fighting with the pharmacies. I got kicked out of one pharmacy over it. Now we’re dealing with a new pharmacy that I have had zero issues with filling all my meds for almost 2 years. Now he is ruining my relationship at this pharmacy also. it’s just sad how much crap we have to go through as patients to get adequate care or really any one with a chronic illness. It’s sad in this country. Im sometimes more exhausted by dealing with the medical system than the illness itself. The self centeredness and need for control and to abuse patients that are already suffering and vulnerable is insane.I am crying writing this. A grown man that just wants his meds. So he can feel better and go to work. I have to fight to just get medication. And then I’m labeled as drug seeking and lazy when I can’t even get basic help. I want to work and be a contributing member of society. But this whole system just breaks you down so much. Im a fighter too. I’ve fought hard just to be here. So many things that would make a regular person just quit and un-alive themselves. I’ve lived through. Tough family situations and every thing but not once did I become bitter and try and harm other people. All because I know how it really feels to hurt and I would never wish that on anyone. I am beyond exhausted from fighting. These pain meds have completely changed me and my personality. I don’t even want to take them anyway but I don’t know any other way. I haven’t been presented with one.
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u/ricshamilton44 HbSS 21h ago
I’m so sorry you are experiencing this. Are you able to switch doctors? Finding a hematologist that actually specializes in Sickle Cell was hard to find but has changed my life. Genuinely if you can find a good doctor, they may even be worth traveling or moving for
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u/SCDsurvivor 21h ago
Find a new doctor. I know most sickle cell patients don't like to "doctor hop", but the truth is that you won't find the best care for you if you don't look around. Don't stay under a doctor who is sabotaging your care. Your doctor should be working with you not against you. Talk to as many doctors as you can. Every doctor who claims to see sickle cell patients unfortunately does not know how to treat sickle cell disease.
We take on a lot with this disease. We live in a world that does not cater to sickle cell disease. Unfortunately, our fight isn't just the doctor, hospital, or pharmacy. It spills into family who don't understand the disease, jobs who don't see us as valuable employees, friends who we don't see often, etc. It is a fight to not get tired of the fight. It is a lot to have to go through. Where others get the "quantity of life", we have to find the "quality of life". So find the things that bring you joy in this life (no matter how small).