It is a privilege to not need lifesaving or disease-modifying medications, with all their potential risks and side effects. If you don’t need these drugs to survive or be a partially functioning member of society, count your blessings.
There are many of us who are not so lucky.
Living with a chronic illness, unfortunately, comes with its fair share of chronic opinions from others. Even when people think they are just offering helpful advice, their messages can come across as rude and hurtful. These comments and advice can also have repercussions on patients’ physical and mental health.
I see this all too often with my rheumatoid arthritis, but each condition seems to have its own mix of “you should try this” advice. Friends of mine who live with conditions like asthma, multiple sclerosis, epilepsy, and diabetes receive similar comments and advice along the lines of: “think positive,” “do more yoga,” “lose weight,” “exercise more,” “eat kale” — the list goes on. By the way, these are often already on our grocery list or part of our regular routine.
Such unsolicited, though often well-meaning, advice frequently comes before words of kindness, support, or compassion from others when we talk about our illnesses. Maybe if they only knew what it was like to live with an incurable progressive autoimmune disease like rheumatoid arthritis they would learn that advice and comments are uncalled for.
Unless you have lived experience with my condition or are a specialist, park the advice train. It’s not what I need.
Think Before You Speak (or Opine)
Many people speak before they think. Rarely do they know my actual story or see my daily fight with a largely invisible disability.
After weeks, months, and years of living with our condition — going through medication after medication until we find one with minimal side effects that makes a difference in how we feel — how can people think that we haven’t already tried everything else that we can?
I’ve given myself eye strain and a sore neck researching anything for relief from my RA pain and fatigue. I’ve gone broke trying remedies that just become another cost I can’t afford on disability, without getting any better in the long run. I’ve seen the documentaries on Netflix and YouTube videos on the latest health trends. I follow dozens of nutritionists and naturopaths on social media to see what they have to say. I have attended dozens of nutrition and arthritis events to learn about the research behind arthritis and diet.
Pain can make people pretty damn desperate. But what advice givers need to realize is that there is a big difference between treatments and cures.
I had a nurse tell me to go vegan and eat nothing canned — during the loss of a pregnancy, for extra-inappropriate timing. One time I was stuck beside a lady on a six-hour flight who, before takeoff, told me to fly to the Czech Republic for some radium cave treatment she swears by for her back pain: “You won’t need medication anymore.”
Sometimes such advice is said with the best of intentions — people genuinely want you to know about a treatment that worked for them with the hopes that it could help you too. Sometimes, it seems, people just want to be helpful and they don’t know how to show it or channel it. Maybe people just want to look smart and informed about new health trends.
When Advice Turns Judgmental
But in other cases, the advice doesn’t appear to be given with good intentions, but rather doled out with judgment and negative emotions. I refer to these usually as diet, medication, or lifestyle shamers — and they are more common than should be. “You are sick because of the cancer-causing drugs you take” or “you should eat better” or even “you are sick because you have tattoos or color your hair,” if they want to get creative. “You shouldn’t trust ‘big pharma’ or doctors — they are just money-hungry narcissists.” What??
We chronic illness patients hear it all.
The world could use a little more kindness, empowerment, understanding, and support in it. Sometimes a little bit of that can go a long way for someone suffering.
The thing is, it’s not as easy to “always eat healthy,” and what works for one person may not work for another.
And even if I ate the most perfect diet on the planet, it still wouldn’t cure my rheumatoid arthritis. I’m sure it would help me feel a little better (which is why I have made huge strides in eating more whole foods and cutting out sugar and alcohol and junk). I have met people who follow a strict diet yet still rely on taking medication in order to feel well and functional. I’ve met many people for whom following a nutritious diet alone didn’t stop them from needing a wheelchair.
Consider the Chronic Illness Perspective
When you live with chronic fatigue, something as simple as grocery shopping can send you into a flare for a few days. We don’t always have the luxury of energy or money to spare on all organic fresh foods or added costs of delivery services. Living with chronic illness itself is expensive and disability pay is peanuts. (You can’t survive on peanuts alone, and they don’t allow nuts in classrooms anymore. Think outside the lunch box.)
I have to be creative to feed myself and my young son, who is definitely not interested in eating kale or wheat grass. I often have to cook and clean for two, which is exhausting and expensive for a single mother. I try my best, which makes a difference in how I feel, but life itself is inconsistent like chronic illness.
Diet and Medication Shaming Causes More Harm than Good
Judgmental comments lead to guilt and questioning, even when we know we’re doing what’s best for our bodies and health. Living with chronic illness comes with a lot of guilt already; we don’t need any more.
When it comes to taking disease-modifying medication, patients have lots of questions and concerns about side effects, fears of it not working, worries about the future. Trust that patients have already given this a lot of thought. It’s a conversation between us and our doctors. We don’t need outsiders questioning our choices.
Rheumatoid arthritis can have some drastic effects on peoples’ lives when it is left untreated. It can make people disabled and even cause them to die early. Advances in modern medicine, such as more and better medication options, are helping millions of people across the world to avoid these consequences. People diagnosed with inflammatory arthritis before biologics were available had a lot more deformities and comorbidities what patients today experience.
My aunt was diagnosed with RA before the era of biologics. She was in a wheelchair, her hands were permanently bent out of shape, and she dealt with many comorbidities, which ultimately led to her death — during the same week in which I was diagnosed with rheumatoid arthritis.
What would she, and others, give to have had these medication options back then?
All of these comments — whether well-intentioned or deliberately judgmental — cause us to feel stress. Stress has a major impact on illness. That’s why folks are always telling us to do more yoga, right?
I’ve learned from my years of experience with rheumatoid arthritis that I know what is best for my body and my illness. When I come across such comments now, I know it is best to just walk away.
It is not worth the stress.