by Joel Nelson
Medically Reviewed by:
Danielle Hildreth, RN, CPT
by Joel Nelson
Medically Reviewed by:
Danielle Hildreth, RN, CPT
Your long-term health condition and circumstances may change throughout your life. These tips can help you address crucial conversations with your care team.
Our acceptable outcomes change with our life journey with chronic illness. When were you last asked what was acceptable to you? What matters to you?
As a child, my arthritis impacted me in very different ways than what it does today. Physically, I spent long periods, sometimes months at a time, in a wheelchair and what felt like even longer on my back, staring up at the paint-peeled ceiling of an old British Victorian children’s hospital ward.
Doctors back then barely spoke to me, only frostily poked, prodded, and caused me discomfort before swiveling to my parents to discuss what unpleasant thing they were going to do to me next.
Pediatric rheumatologists were rarer than biologics in the early 90s, so in defense of those around me, they did their best with the tools they had for “the kid with arthritis.” This often involved throwing a load of tablets at me, evaluating which ones my body could tolerate and which ones made a 12-year-old violently sick.
When I was spoken to, it was always the same three generic questions:
“Where does it hurt?”
“How much does it hurt?”
“How long are your joints stiff for in the morning?”
Once I answered those, usually with two- or three-word answers, the dialogue involving me in this arrangement was over.
When I wasn’t at the hospital, I would bounce between home and school, depending on whether the school could accommodate me on a day-by-day basis due to the fluid nature of my disabilities.
If I was in a wheelchair, I had no choice but to stay at home, given my school had zero ramps and stairs to get virtually anywhere. If I could just about walk, they’d figure out which downstairs classrooms they could justify sticking me in — often with different year groups and rarely my friends. It was an experience far more daunting than the doctor’s office.
Nobody in my doctor’s office, in the children’s ward, or at the school ever asked me what I wanted. Nobody asked me how I felt, if I was coping, or what the impact was on me beyond the pain. Nobody asked what mattered to me and what my acceptable outcomes managing this disease were.
I often think back to those days and wonder if I did have a voice, what would I say? I’m sure I wouldn’t have delivered it as confidently back then and with adult vocabulary or hindsight, but it would be along the lines of:
“Being with my friends is more important to me than what hurts.”
“The missing out is more painful than the arthritis.”
“The time stuck in beds is more debilitating than the stiffness.”
The name stays the same, but the priorities change.
Today, I am in my 40th year, my 30th year with psoriatic-associated juvenile idiopathic arthritis. The simple question of “What matters to me?” would have seen many answers over the years.
In my late teens, I was more concerned with being able to go to university, remove traces of any limp, and being able to drink alcohol on whatever medication I was on.
In my 20s, I would have taken any amount of pain over the physical manifestations of psoriatic disease as I toured the country in a punk rock band and gave far too much consideration to how I looked.
In my early 30s, aging crept in. My hair has long since fallen out, and the band has been consigned to another “We could have been big!” hackneyed tale. My pain suddenly became a priority, given I had nothing else to focus on.
Today, being able to keep up with and do whatever my 5-year-old son demands is virtually the only thing in my world that really matters to me.
To date, how many times has a rheumatologist or dermatologist asked me what matters to me? Zero. How many times have I been asked what my priorities were? Zero.
How many times have I been asked about anything other than my pain, rashes, side effects, or where these issues present — such as about my family, my employment, financial security, my dreams, life goals, and hopes for now and in the future? I could count them on one hand. And the lady who finally asked these questions was an extraordinary medical professional.
Fast forward almost 30 years, and adulthood and experience have helped me find my voice. I now have these conversations with my doctors.
Things are improving slowly, but they are still very much forced. These conversations are something I certainly must take the lead on.
As a patient advocate, I understand our medical professionals’ challenges. We know that 7–10 minutes is not enough time to discuss and concentrate 6 months, sometimes a year, of lived experience 24/7 with our disease(s).
I also know that many healthcare systems are not equipped to offer a multidisciplinary approach that is often so needed to manage chronic illnesses, resulting in specialists being hesitant to ask about our mental and holistic health and well-being. They may not have the means to assist us with the answers we provide.
Be that as it may, it‘s still your appointment, your disease, your care, and your life being discussed in that room for those 7–10 minutes. If something matters to you at that moment in time in your life, then it should matter to your medical professional and the treatment of your disease, too.
What would be my advice for having these conversations with your medical professional? It depends on your relationship with your doctor and at what stage in your journey you are with your disease.
It is easy for me to sit here wearing my “three decades served with arthritis” badge before I’m even 40 and lose sight of just how daunting and intimidating those conversations can be, especially in the early days when you are scrambling around for reliable information. But these simple three tips should help serve as a good foundation in any scenario.
I know everyone says this one, but that’s because it’s important!
We cannot be expected to remember and condense all the things that have happened to us with our disease since we last saw our medical professional, especially post-pandemic and with many waiting lists at an all-time high.
Write down those times your arthritis impacted you, rather than just what hurt and where. You won’t forget things like the time it stopped you from playing with your kids, going on that trip, or the hobby you can no longer maintain.
You might not be able to dictate the questions, but the answers are your blank canvas to fill. Using your notes, weave your experiences into the responses you give for those traditional questions we’ve all faced 100 times.
For example, when you are next asked, “How is your pain?” Instead of the routine “good,” “bad,” or “indifferent” response, tell your doctor what your pain means. For example, “My pain is OK today, but when it’s bad, like last week, I cannot lift the toddler out of his highchair, and this causes me a lot of distress and puts pressure on my partner.”
These sorts of responses put more emphasis on the impact of your pain as opposed to treating the pain in isolation.
Paint your picture, giving examples of how pain colors your life and the way you want to live it. Your doctor will have little choice but to acknowledge and consider its impact alongside its severity and location.
You might wonder how asking the doctor why will help communicate your priorities. Remember that your consultation should be a partnership in your care, a two-way conversation. So many people overlook or avoid the fact that you can ask questions, too.
Doing so doesn’t only educate and inform you as to why an action is being taken. It also guides you to understand what that new drug should look like if it works and validates your doctor’s understanding of your conversation, situation, and the impact of your disease.
For example, (following up on the previous example of how your pain affects your family life) if you ask the doctor why he is changing your treatment and he says something along the lines of “I’d like to help you get on top of this flare so you can enjoy time with your family,” then you know they have got the memo!
If nothing else, asking why sets the tone for this conversation and future discussions — saying, “I’m engaged and want to be an active partner in my care.”
The next time you see your medical professional, tell them about your journey with your chronic illness and what you want to achieve with it at that given time. After all, nobody will spend longer living with it than you. Nobody is more of an expert on its impact than you.
Medically reviewed on January 29, 2024
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About the author
Joel Nelson is a published writer and international speaker who hosts a podcast, Twitch, and YouTube channel where he facilitates conversations about living with chronic illness and pain. An award-winning patient leader who uses his story to inspire change, Joel shares his experience with chronic illness, pain, and associated mental health challenges to educate and reduce stigma while helping others feel less alone. He has built a growing global community of peer support through his candid, ‘no-filter’ approach. Joel lives in Norfolk, UK, with his wife and young son.