Instances health care professionals were less than professional – and less than caring

September 2012

Having struggled with anxiety all my life, in September of 2012 I started suffering from what seemed like mild panic attacks. I had been diagnosed with MS nine months before and found out that Avonex not only wasn’t doing anything to prevent disease progression but it was also messing up my liver and thyroid. Plus, due to bureaucracies I had to wait before being able to move to another drug. My chest had begun to hurt, right where my heart is supposed to be, and when it hurt really bad I had trouble breathing. It even got to the point I wondered if I had heart problems. So I went to see my psychiatrist.

Now, I’m fairly open to taking suggestions and trying new things if that means there’s hope my symptoms will improve. But my psychiatrist just went: “I’m not going to prescribe you anything. You see, what you learn from a disease like MS is that you don’t really control anything in your life, so you shouldn’t worry so much.”

So I just spent 70 euros on “expert” advice that I could have heard from my mom, dad, boyfriend and closest friends… for free? Thanks, doc. What’s next? Telling me to smoke some weed?

I never saw him again. Found myself a new psychiatrist who listens and cares. She prescribed me Escitalopram and my chest never hurt again.

November 2012

My mother suggested I saw an acupuncturist so off I went. I kept telling him about my fatigue, blurred vision and trouble sleeping but he didn’t seem to listen because all he wanted to treat was my legs, despite the fact that I stressed I had never had mobility issues. But that wasn’t the worst. One day, as I was telling him about my symptoms and some of my fears, he said there were a lot more complicated situations out there, and went on talking about the work he did with children with cancer.

Dear Mr Acupuncturist,

I’m not a total moron and I’m perfectly aware there is a lot of misery and suffering out there, and things that just don’t make sense and are just not fair. But since I hired you to see if there was anything you could do for me, can you at least for these sixty minutes focus on me? Then we can both go on worrying about people who are suffering more than me. I can even buy a “suffering meter” to see who qualifies.

And as if this wasn’t enough, I noticed my mother somehow knew about things I had never told her but had mentioned to him. Have you ever heard of confidentiality, Mr Acupuncturist? Privacy, maybe? Trust? I can’t even…

April 2013

I went to see another neurologist to hear yet another opinion about all MS drugs available, their risks and benefits. As we were discussing second-line treatments, which heavily suppress many functions of your immune system, he said something as unbelievable as, “You needn’t worry about catching something like, let’s say, AIDS, ’cause you’re not gay.”

Dear universe, did I travel back in time and I’m in the 80s again? Am I speaking to a doctor or a religious fundamentalist? Should this person be practicing medicine? I’m puzzled.

September 2013

I found out I have endometriosis. My gynecologist said, “We’re gonna need to operate as soon as possible. I’m going to schedule all the pre-op exams.”

I wasn’t happy about undergoing surgery, so I went for a second opinion. Doctor said “I’m not going to operate a 30 year-old who’s never had children and who has another condition like MS without at least trying some medication first.”

Bless you, doctor. Medication is working, my cyst is almost invisible now and my ovaries are still intact. You’ll always be my gynecologist.

April 2014

I have a new primary care physician. I went to see her, tell her about my conditions and what generally life is like for me. That’s when she says, “A lot of people with MS are able to do pretty much everything in their lives, why can’t you?”

If ignorance were music, you’d be the national orchestra, doc.

Chronicle of a morning spent at the hospital

This morning I had my routine appointment at the NHS hospital to get prescriptions for my Copaxone. 

Here we have a mixed health system, where the NHS coexists with private hospitals and private practices. I was diagnosed at a private hospital because not only do I have insurance but I also thought that I was only going to be prescribed some simple eye drops for my double vision (yeah, silly me, I know, let’s skip that part) and therefore didn’t want to go through the long waiting hours to be seen at a public hospital.

I love the neurologist who diagnosed me. She’s the kind of doctor who will never say “There’s nothing else I can do for you.” She is committed to helping her patients, she always asks about me, the person, before asking about me, the patient, and she always worries about my mood as she knows my history of depression and the impact it can have on my MS. However, she had to refer me to the nearest public hospital because, she explained, the only way I could start on a therapy was to be registered and seen regularly by a neurologist at a public hospital.

There is a reason for it. As I mentioned in a previous post, multiple sclerosis is one in a list of diseases whose patients don’t have to pay for any treatment or medication. That is why people are required to be registered at a public hospital, so that the state has some control over how much it is going to spend. But if this sounds very altruistic to you, consider the following: the cheapest medicine for MS costs around 500 euros, in a country where the minimum wage is set at 485 and a huge percentage of people are unemployed, retired or on disability. Even if I make 1000 euros a month, my Copaxone costs around 800, which wouldn’t leave me much to live on for the rest of the month. So this is the best solution to ensure that thousands of people manage to keep living their lives the best possible way.

But this is where the generosity of the NHS ends. If unlike me you don’t have insurance and the possibility to see a private doctor, you will probably have to wait 8 months for an MRI. You will be stuck with a neurologist who doesn’t care. My NHS doctor is supposedly the greatest expert on multiple sclerosis in the country. I should be honored that he’s my doctor but I’m not. Because while he may know a lot about MS, he doesn’t look like he knows a thing about people – you know, the human beings around the lesions in the brain and spinal cord. He told a woman not much older than me that he had already given her all therapies available and that there was nothing else he could do for her. He forgets that multiple sclerosis is not only about disease-modifying drugs. That are things like physical therapy, occupational therapy, speech therapy that can greatly improve the patients’ well-being. But of course, the NHS is not going to give you any of that. You either have money to go elsewhere and look for alternatives or you’re done.

The differences between public and private are so unnerving that I can’t help but feel revolted. I wait in the waiting room to see that lovely doctor. I’m extremely uncomfortable as usual. The hospital is the biggest in the city, which means it is chaotic, messy and noisy. I see a lot of misery around me. People who look older than they probably are, dirty, beaten. People who tell each other every tragedy in their lives, ’cause it’s the only place they find empathy. People who – I am sure – had they been provided with proper care from the beginning, wouldn’t be in wheelchairs, wouldn’t be in such bad shape. There is a part of me who wishes I could help them. But there is another part of me who wants nothing to do with them, who sees me as separate from them. “I’m not like these people. I’m ok, I don’t even look sick.” But this is obviously wrong. I probably have more in common with these people now than I do with co-workers. And let’s not forget that it only takes me becoming unemployed to be in their shoes, with no other choices than relying and depending on that hospital. It could be me. It can still be me one day.

The doctor calls my name and I go in. It only takes about ten minutes. I waited for two and a half hours for a ten-minute appointment. He barely glances at me as he is looking at my file in the computer. Asks me how I am doing. “Fine.” Any relapses? “No, nothing.” You’re on Copaxone, any lesions from the injections? “No, everything’s fine. The nurse comes check on them regularly.” Good. He chats a little about Tecfidera probably being available six months from now, passes me prescriptions for another nine months of Copaxone, vitamin D, and schedules my next appointment. And that’s it. I’ll see you in nine months.