Here, insights from some experts on the patient’s experience of rheumatoid arthritis.
Mariah Leach, 35, of Louisville, CO was diagnosed with rheumatoid arthritis (RA) in 2008 at the age of 25. Her experiences prompted her to become active in patient advocacy and education initiatives through organizations such as the Arthritis Foundation. Today she works to support individuals living with chronic illnesses, particularly women who are or want to become mothers. Her own experience and interviews of other RA patients inform the following “wish list” of things patients with RA want doctors to remember. (Please note some names have been changed to protect patient privacy.)
#1: Please remember where we are in our journey.
Being diagnosed with RA is a life-changing event for any patient, and it can take time-sometimes even years-to learn how to live with the diagnosis. For this reason, it can be especially helpful if you can remember where we are in our patient journey and make an effort to adjust your advice accordingly.
“I know I’m just one of many patients,” says Mandy Dokter, who has been living with RA for a year and a half, “but for me this is my one life. What might be typical for RA patients in general was still brand new and frightening for me when I was first diagnosed.”
If our doctors can respect where we are emotionally, it will help build trust, which is especially important for a lifelong disease where the doctor-patient relationship can last for many years. This can be as simple as quickly reviewing our charts and following up on the areas of concern from the previous appointment, so that we know you appreciate what we are going through.
#2: We want to be partners in decision-making.
For many patients, the risks and adverse effects of the medications used to treat RA may seem frightening. This is particularly true for medications that are administered via injection or infusion, where few of us have previous experience. Including us in the treatment decision-making process can help us overcome this fear.
Encourage us to report our symptoms honestly and try to address our reservations about medication administration, risks, and adverse effects. “My doctor believes in me,” says Julie Lopes, who has been living with RA for a year. “When I say something is wrong, he hears me and uses the information to give me the most appropriate medication.”
We’d also like to be able to share our own research, so we can work as a team to choose the best treatment option available for our lifestyles. “My doctor listened to me with regards to being on medication and breastfeeding,” recalls Heather Miceli, who has been living with RA for 7 years. “I brought him info from LactMed and he quickly did some research right there in the office and was happy to then write me a prescription.”
#3: Fatigue can be just as debilitating as joint pain.
While patients with RA certainly wish for reduced joint pain and swelling, it’s important for our doctors to remember that fatigue can often be just as debilitating as joint pain-sometimes even more so. “I want my doctor to understand that fatigue is a huge part of living with RA and that it requires treatment for the patient’s quality of life,” emphasizes Darcy Smith, who has been living with RA for 12 years.
From the perspective of patients with RA, it’s very important for our doctors look beyond mere examination of our joints. We want you to ask detailed questions about how we are feeling and functioning. If our joint pain has improved but we are still dealing with fatigue, we may be struggling to go to work or take care of our homes or children. We not only need to know how to treat our joint pain, we also need advice about what we can do to help fight fatigue.
#4: We’d like advice beyond medications.
RA is a disease that can affect every aspect of a patient’s life, so we would appreciate it if our doctors would offer advice and information beyond what medication we should try next. Just as we need information about how to fight fatigue, we’d also like to know your thoughts on diet and lifestyle changes, alternative treatments with merit, ways to incorporate exercise into our lives, whether physical therapy would be beneficial, and how to deal with the mental health impact.
We do realize that your time is quite limited during appointments, so we don’t expect you to be an expert on all of these topics. But if you could recognize that RA affects all areas of our lives and refer us to resources, support groups, or other healthcare professionals, it would be greatly appreciated.
#5: We need your support to achieve our life goals.
Because RA affects so much of our lives, it’s important for our doctors to address both our short- and long-term life goals. Whether it’s finishing school, starting a family, landing a new job, or taking a dream vacation, we often need our doctor’s support and advice to achieve our long-term goals.
“I was diagnosed at 31, and I had no idea what to expect,” says Alissa May Ford, who has been living with RA for the past 2 years. “My rheumatologist tends to focus on right now, but I want to know about 5 years, 10 years, 20 years out. For me there has been too much confusion and research left to me.”
Laurie Proulx, who has been living with RA for 27 years, agrees. “I’m more than the disease. Ask how you can support what I want out of life. Work? Family? Travel? Ask me a little bit about myself because I suspect we’re in this ‘relationship’ for a really long time!”
In the end, patients with RA want doctors they can trust and with whom they can work as a team to figure out how to live well with a lifelong disease.