Living with a chronic illness like rheumatoid arthritis (RA) often means dealing with a lot of unsolicited advice from well-meaning individuals who have never lived with the condition. While their intentions are usually good — it’s human nature to want to fix a problem — it’s important to recognize that some problems, like RA, simply can’t be fixed. This condition is an incurable systemic autoimmune disease.
The unsolicited advice we receive can be incredibly frustrating, downright hilarious, or enraging. Over the years, I’ve heard countless suggestions, ranging from drinking sea water to sitting in radium caves, or even being told to “just be more positive.” Personally, I developed a distaste for unsolicited advice because the most support my now estranged mother gave me after my diagnosis was to place crystals around my bed.
It seems that there’s no shortage of suggestions people are willing to offer us to cure our diseases. If only it were that simple. Arthritis wouldn’t be the leading cause of disability and the highest prevalence of chronic health care conditions, costing the economy billions and billions of dollars each year.
Reveal your illness, expect unsolicited advice.
There is no right or wrong way to handle these situations. There have been times when I tried politely declining someone’s suggestion, only to have them respond nastily. It seems that if you just whisper “arthritis,” someone inevitably emerges from the woodworks to shower you with unsolicited advice.
Common advice for my illness includes turmeric, going vegan, trying keto, or doing yoga. It’s clear that many people base their recommendations on articles in tabloids or random YouTube videos claiming to have cures for all autoimmune diseases. Some conditions have specific suggestions that allegedly alleviate symptoms, but these claims lack scientific evidence.
For instance, turmeric is often suggested for arthritis, drinking more water for migraine, finding faith or being positive for mental health, and cutting out gluten and dairy for Crohn’s and colitis. The list goes on. It’s disheartening to see the abundance of misinformation surrounding our diseases.
Unsolicited advice is annoying, disrespectful, and critical.
I have always found it frustrating how people jump to give advice without even asking about my current strategies for managing my chronic illness. Why don’t they inquire about how it has impacted my quality of life? How many medications have I already tried? I’ve been living with this disease for quite a while and have experimented with numerous approaches. What about considering if I can even afford their suggested remedies?
Rheumatoid arthritis led me to rely on disability benefits, which don’t provide much financial support. I’m on a tight budget, struggling to afford healthy groceries for myself and my child, so I can’t afford to waste money on things that will not have a long-term effect for me.
It seems that many people are more interested in speaking rather than listening. Even individuals I haven’t heard from in years will reach out to suggest something to me, without even asking how I am doing. Their messages usually revolve around some supplement or diet they’ve heard about. Honestly, what I often need is someone who will simply lend an ear and listen.
There really isn’t a shortage of why unsolicited advice with a chronic illness is annoying, but here are a few key points to outline:
- It is often ablest and dismissive of our debilitating conditions.
- It is disrespectful and quite presumptive to insert your opinions or ideas.
- It gives an air of superiority; it assumes you know what’s right or best over my lived experience or the suggestions of my highly educated and experienced doctors.
- It comes off passive aggressive and patronizing.
- It often feels critical rather than helpful. Along with causing stress, it can make us feel helpless, defensive, stupid, worthless, weak, and untrustworthy of our own decisions.
- It creates anxiety and negative emotions toward us because we aren’t doing enough.
- It can turn into nagging or bullying when repetitive.
Unsolicited advice can be harmful for newly diagnosed.
I remember when I was first diagnosed with RA, I was willing to try anything in search of relief. Desperation to regain my health consumed me. Dealing with pain, fatigue, mental health challenges, flu-like symptoms, sleep disturbances, and more, it’s no wonder I craved relief.
I was scared of my disease and what it was doing to me. Navigating through different medications during the trial-and-error period was far from easy. It took time to find a treatment that effectively slowed the progression of my disease with minimal side effects.
Being told that my medications were only making me worse or that trying certain herbal supplements would magically boost my immune system and cure me was tempting. In my desperation, I wanted to believe that a simple solution existed.
I often encounter advice from people without firsthand experience of autoimmune diseases, suggesting supplements like spirulina, echinacea, or ginseng because they are good for the immune system. However, the reality is that these supplements may not good for someone like me who already has an overactive immune system. It’s best for us to avoid self-medicating and check in with our pharmacist and/or doctor before trying any new supplement.
Just because something is natural doesn’t automatically mean it is good for us. Ultimately, the choice of treatment is up to the individual living with the condition. Whether they opt for an all-natural approach, choose to remain untreated, rely on pharmaceuticals, or adopt a combination that best suits their needs, it should be their decision to make with their doctor.
There is no cure for RA, but there is remission.
Rheumatoid arthritis cannot be cured, but it can enter a state of remission for some individuals. Remission occurs when there is no disease activity or very low disease activity for a duration of six months or more. However, it is important to note that remission does not mean you stop taking your medication, as the disease has the potential to come back. Factors such as stress, environment, trauma, injury, and infections can trigger a recurrence of RA even after a period of remission.
The other thing to understand about a variety of autoimmune diseases like RA is that there are different forms. My RA is moderate to severe, which has a less likely chance of achieving remission compared to someone who has a milder form. RA is also a progressive disease, meaning it tends to worsen over time. Thankfully, we have biologics to treat rheumatoid arthritis there has been a dip in how progressive RA and other forms of inflammatory arthritis are.
It is crucial to understand that autoimmune diseases, including RA, exist in various forms. In my case, I have moderate to severe RA, which diminishes the likelihood of achieving remission compared to individuals with a milder form. Moreover, RA is a progressive disease, meaning it tends to worsen over time. Fortunately, the introduction of biologics as a treatment option for rheumatoid arthritis has led to a reduction in its progressive nature and has positively impacted other forms of inflammatory arthritis.
The timing of effective treatment also plays a significant role. It took me five years to receive a diagnosis and initiate my treatment journey. Had I been diagnosed earlier and started treatment promptly, the course of my RA might be different today. While I want to cure my disease and hope for a cure one day, there isn’t one now.
Diet alone will not cure my RA.
Diet is a fantastic way to improve overall health and well-being. However, it is important to understand that, by itself, it will not cure or treat my chronic illness.
During my time as a patient advocate and partner in research, I have met countless other patients. Among them are registered dietitians who themselves have rheumatoid arthritis (RA) or other autoimmune diseases. They would be the first to tell you that diet alone cannot cure our conditions.
Also, it is crucial that we refrain from shaming individuals for their illnesses. I’ve met many who were athletes, vegans, or registered dietitians who started symptoms when at their healthiest.
For instance, my aunt, who was diagnosed with RA four decades before me, experienced the debilitating effects of the disease. Despite being athletic and in good health prior to her RA diagnosis, she became wheelchair-bound, suffered from deformed hands, and struggled immensely. The family members that were quite critical and always had advice to her are of course very similar to me now that I share the same diagnosis as her. This is just some people’s nature — we can’t waste our precious limited energy on them.
There is no right or wrong way to respond.
If I encounter a sweet 80-year-old lady in the sauna who suggests I try drinking ocean water, I will simply smile, express gratitude, and assure her that I will look into it. However, if someone insists on nagging me about following strict practices like intermittent fasting and consuming only raw vegan food, without allowing me to discuss my own self-management strategies, there may come a point where I tell them f-off. It happens.
There was an incident when I found myself seated next to a woman on a flight from Vancouver to Chicago. I was on my way to a patient advocacy conference, and upon learning about the illness I was advocating for, she became incredibly insistent that I should travel to the Czech Republic every six months and spend time in radium caves, as it had allegedly cured her osteoarthritis and Crohn’s disease. Despite my polite refusal, she would not take “no” for an answer. Consequently, I ended up having to put her in her place and then sit beside her awkwardly for the next five hours in silence. Sometimes I just don’t have the energy to respond, especially if I find the person draining.
Sometimes hurtful unsolicited advice can even come from health care providers who we trust. During a pregnancy loss, the nurse assigned to me kept telling me that if I ate vegan, stayed away from any food in a can, and made sure that everything was raw, my disease would cure right up.
Some ways that I respond to unsolicited advice:
- Thank you; I’ll ask my [insert specialist].
- That’s a good idea; I’ll think about that.
- I already have a treatment plan, thank you.
- I have tried it already and it did not work for me (or I already do it).
- There is no scientific evidence behind that.
- That’s an interesting opinion, but I prefer to do it this way.
- I’m not looking for any advice right now, thank you.
- That’s not actually in line with my values or treatment plan.
There really is no right or wrong way to respond to unsolicited advice. Most people mean well. Some people offer unsolicited advice as a form of being in control and some are just being critical. It’s important to understand where the advice is coming from and respond (or don’t respond) in a way that feels comfortable for you.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
