Long Rant- Dr’s don’t take me seriously

In my country, we have public and private healthcare. Public wasn’t so good before, but recently started to improve. Public is free for citizens and private is very pricy.

So, I saw a private rheumatologist almost 4 years ago and was diagnosed after tests and examinations with AS. I have all the symptoms except for uveitis so far. The problem is I can’t do an MRI- too claustrophobic.. so we did an X-ray and there is some very small but visible damage to my hips. So rheumatologist started me on voltaren, but it made my asthma bad. So we switched around probably like 4 or 5 NSAIDS and none worked, I just had terrible side effects. So the doctor said we need to start biologics and sent me to a gp to get updated on my vaccines. It was a painful process, I got like 3 on one day (hepatitis, dtap and another I can’t remember rn) and I made sure to get the boosters like I was told. So now that I’ve tortured myself, I went back to the rheumatologist and he wasn’t sure about which biologic to go with cause now he was starting to have doubts thinking I might have lupus that’s masking as AS and refused to do anything without an MRI. I kinda lost it and started crying. At this point it’s been pain and suffering for over a year and a half, thinking I was finally gonna get an actual treatment and treatment plan and it was just yanked from me. I left and just went home depressed for a couple months, then found out my husband and I need to move for about 1 year for our education.

I tried to get treated abroad and it was a joke, so gave up until we were back. Went back to see the same rheumatologist, hoping for anything for relief. He treated me as if I was faking it, like how can some one rate their pain as an 8/10 and show up to him, he told me I should go to public health and that he can’t do anything. His demeanor was a 180 from before, before he was apologetic and now it was like I was the reason he had a bad day.

It’s important to note that I am a women in a male dominant society, I’m a national/citizen -not many of us-, I’m considered obese (hard to exercise when you literally can’t move), I’m also very educated, not afraid to speak up and also I speak English fluently (my country’s main language is Arabic and a lot of doctors speak English due to western education).

So I go to a different private doctor, turns out he used to be head of rheumatology in the main public hospital. He did tests and X-rays, and thinks I also have AS and suggested a new anti inflammatory that so far actually has helped, and he put me on methotrexate. Methotrexate didn’t really help and I was so tired I’d be sleeping for like 4 days after the dose. I didn’t think it was worth it. New doctor suggested I get on biologic but they are incredibly expensive to buy without insurance, so he highly suggested we go to public cause we could get them for free, he said he’d give us some names of doctors to get direct referrals to them.

I tried the first doctor on the list. Big mistake. He dismissed all my symptoms, won’t do anything without an MRI despite me telling him I meet all criteria for non radiographic even tho it shows on my X-Ray. He said he thinks it’s fibromyalgia. Fibromyalgia! He started talking to me about what fibromyalgia is until I interrupted him and told him I know I don’t have it.. and he asked me do I even know what it is?.. I replied I do, I actually do my research. And told him I don’t want to have AS and I’m not insisting it’s AS cause it’s so great, I’m insisting cause it ain’t fibromyalgia, and then he kept going on says it is a real disease. So we left, I was so upset. It’s like he didn’t believe I can have so much pain and still be walking (I had a cane!) and he couldn’t believe I was educated and questioned him.. I’m just so angry!

Im currently waiting on a new referral to a different doctor in a different public hospital. I don’t want to spend all my time and energy into just being believed. I want to move on with my life, I want some relief so I can actually gain some strength back in my body, I want to have a baby and don’t think it’s right by my body or my future child to be so broken I can barely function.. and I’m really getting tired of being in so much pain it’s getting too hard to hide! (It’s a bit of a pride issue, I know).