5 Things Our Community Wants People to Know…

5 Things Our Community Wants People to Know…

In preparation for Arthritis Awareness Month, we reached out to our patient community to find out what they wish people were more aware of with regards to their condition. We are extremely grateful to those who took the time to respond. It is through open dialogue with those most impacted by these conditions that we can drive real and effective change, creating a better quality of life for patients and care givers alike.

What the public should know:

  • The way you look is NOT directly related to how sick you are.
    • For many with an autoimmune condition the illness is invisible to those around them, causing many to question the legitimacy of it. Sickness does not come with a specific “look”. We may not look how you thought someone with an illness should look, but we are no less afflicted by our conditions. Nor are we hypochondriacs, our condition is no less real because it cannot be seen.
  • There is a lot more to conditions such as arthritis than simply joint pain.
    • For many patients, joint pain is only a small portion of what they have to contend with. Symptoms like fatigue and depression can be equally if not more debilitating. Symptoms differ from patient to patient and from one day to the next, so just because someone could attend a party with you yesterday does not mean that they do not need to be in bed today.
  • Don’t try to “fix” someone with an autoimmune condition.
    • Accept that it is not within your power to make the patient better and that patients have likely heard every medical and alternative remedy under the sun. Rather than giving treatment advice, offer practical and tangible help like grocery shopping or babysitting.

 

What other patients should know:

  • The road to diagnosis isn’t easy but keep trying until you get there.
    • Most autoimmune conditions do not have a specific test that will provide a simple yes or no answer as to whether the patient has the condition. Diagnosis can be difficult because symptoms tend to manifest differently from patient to patient. If you believe something is wrong, don’t give up. Answers may take time, but they do exist.
  • Decide who matters enough and focus your attention on getting them to a point of understanding.
    • It is not your job to educate everyone around you. Your energy is limited. Choose where to direct it carefully. One patient said it perfectly “As long as those closest to me understand then I’m done worrying about what others think. I’ve learned to put myself first more often now.”

Awareness and education are ongoing concerns in the fields of arthritis and autoimmunity. We would like to keep this dialogue going. Please continue to reach out when there is something that may help our community learn something new about living with arthritis or supporting a loved one with a chronic condition.

 


What do we wish you knew? We work hard to ensure that donations to ANRF go where you intend…to funding research that makes lives better. Donate today. 


 

Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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