In the Blog
Four rights for the chronically ill
Illustration by Erin McPhee
I’m not one for New Year’s resolutions most of the time. My goals constantly change. However, this year I’ve decided to make two very important resolutions for myself: First, I will not accept unsolicited advice about medical issues, and will directly tell people that it is not welcome. Second, I will not debate my condition with others.
Unfortunately, dealing with adversarial people can be a major stress for those with chronic illness and disability. It’s emotionally draining, to say the very least. In addition to contending with their medical conditions, finances, and the logistics of day-to-day life, they also have to spar with those who don’t really understand what’s going on, but feel free to pass judgment.
Chronically ill people have rights. Some of these, such as the right to reasonable accommodation, are enshrined in Canadian and USA law. Others are less obvious, but still just as important. Here are four of them.
Chronically ill people have the right to have fun without being accused of faking their condition.
I’ve encountered people who assume that because they see a photo of me doing something fun, I must really be well. After all, if someone’s sick or disabled, no matter what condition they have, they’re not allowed – or able – to have fun, right?
My emotional and social well-being are important to my overall health, and I don’t think it would help me in any way to become completely homebound or cut off all in-person interaction with family and friends. I do spend most of my time in the house already, and anything I do takes a toll. If I go out and do something, I tend to spend most of my time sitting down and resting in an attempt not to be overwhelmed. I’m usually out of energy after an hour or two, and need days to recover.
Someone who sees a photo on Facebook where I appear to be okay doesn’t see the 24 hours that followed the photo when I wasn’t okay. They don’t see all the days I don’t discuss, where the marquee event is finding the energy to vacuum my apartment.
When someone takes the stance that chronic illness and enjoyable leisure time are mutually exclusive, or that having a good day equates to being cured, it contributes to a mindset that marginalizes and isolates the sick and disabled and feeds harmful stereotypes.
Chronically ill people have the right to be believed.
Chronically ill individuals often fight to be taken seriously. Those with invisible illnesses face particular challenges: people often act as though they’re not really sick. It’s not uncommon for everyone from doctors to friends to be incredibly dismissive of their condition, or the severity thereof. They might be denied or challenged when they seek reasonable accommodation because they don’t meet arbitrary, stereotypical expectations of what a “sick person” is supposed to look or act like. They end up having to “prove” or justify their illness, or to embark on long explanations to skeptics. When they mention limitations they have, it opens the floor to debates. Sometimes people insist that everyone with the same chronic illness has the same abilities or level of health.
Many people truly don’t understand chronic conditions or disabilities, but there are almost always ways to find out about them. I can’t speak for anyone else, but if someone is genuinely curious about my specific issues, I am more than happy to tell them about my personal experiences or direct them to accurate Web resources so they can learn more about the conditions themselves. The catch is that they need to take that information seriously instead of dismissing it.
Everyone – chronically ill or not – has the right to appropriate, informed, compassionate medical care.
If you read personal accounts by chronically ill people, you often discover they saw five or ten different doctors before they were appropriately diagnosed and treated. They’re told that their pain and fatigue aren’t as severe as they claim. They’re accused of being drug seekers, hypochondriacs or “hysterical” if their symptoms are hard to diagnose. If they ask for another referral because their physician isn’t helping them, they’re said to be doctor shopping. They sometimes have trouble getting medication to adequately control their pain. If they’ve taken the time to learn about their condition or become knowledgeable about medical matters in general, they’re met with suspicion. They’re often blown off completely.
Questionable science sometimes works its way into the mainstream medical consciousness. For example, in the UK, patients and members of the scientific community are currently involved in a struggle over the PACE trial, a study on myalgic encephalomyletis. The study’s authors refuse to release their data so other scientists can investigate their claims, the study’s results do not seem congruent with patient experiences or other scientific findings, and there are valid questions and doubts about the research methodology and results, but some in the medical establishment still take PACE’s reported findings seriously.
I am fortunate to currently have a great team of doctors I respect. However, it took a while to find them, and I’m still not receiving treatment for two of my conditions because I haven’t been able to find a specialist who handles them. I’ve seen numerous doctors who have not been compassionate, well informed or helpful. I’ve come across some that have been downright nasty and hostile. A few have claimed that two of my illnesses – both of which were properly diagnosed and have been recognized by major medical associations for decades – do not exist. I’ve seen other doctors who have been grossly uneducated and have repeated information that is either very outdated or blatantly incorrect. I’ve been misdiagnosed and prescribed medication that is dangerous for me. I’ve had to check doctors’ work, and when I’ve pointed out errors or asked for something to be investigated, I’ve always been proven to be right.
This isn’t a problem that just affects chronically ill individuals, either. Many people from all walks of life have difficulty finding good healthcare. By one estimate, one in 20 people in the USA are misdiagnosed every year.
Everyone has the right to good, compassionate medical care. Patients shouldn’t have to fight the medical establishment to receive appropriate treatment or embark on long searches for competent doctors.
Chronically ill people have the right to talk about their illnesses without being judged or silenced.
When a celebrity talks about their illness, they’re perceived to be “brave.” They’re lauded for increasing awareness and inspiring others. When a regular person talks about their illness, they’re often accused of feeling sorry for themselves, dwelling on negativity or seeking attention. The media will often praise those with severe illness or disability by mentioning that they never complain or mention their condition. I have been told numerous times that I should not discuss being sick – and certainly, I shouldn’t write about it on the Internet.
Being ill isn’t shameful. When one has a condition that has changed one’s quality of life and adversely affected everything from employment to finances to personal relationships, yes, it’s going to come up in conversation. It’s that simple. It’s understandable that someone might not want to hear about my illnesses all the time, and quite frankly, I don’t want that to be the main topic of discussion either. However, when I’m spending every waking moment dealing with it in one way or another, asking me to sweep it under the carpet is neither fair nor realistic.
Chronically ill people should never be made to feel guilty about discussing their situations. Their experiences are just as valid and valuable as those of healthy, able-bodied individuals, and they should be able to talk about what is happening in their lives.
Disabled and chronically ill individuals face many challenges. Stress from negative reactions and snap judgments should not add to the pile. They have the right to be treated with the same respect, kindness and understanding as anyone else.