After you’re diagnosed with a lifechanging chronic illness like rheumatoid arthritis, you experience a lot of firsts. The first time you see a rheumatologist. The first time you’re prescribed a medication that you’re both excited and fearful about taking. The first time you’re too fatigued after a simple activity — like showering — to go about the rest of your day. The first time you meet or speak with someone else who has your same disease.
For some, this happens right away — perhaps even in the waiting room of the doctor’s office where you get your diagnosis. For others, it can take weeks, months, or years to find other people who have a similar diagnosis and who you feel you can open up to.
But regardless of when this connection happens, it can be one of those moments that gets seared in your memory.
At the time of my rheumatoid arthritis diagnosis, I felt utterly alone. But my story is not that unique. I was now among the one in four women diagnosed with arthritis. When I found out I had RA, my first frame of reference was my aunt, who had a debilitating case of RA as well as diabetes, and unfortunately passed away the same week I received my official RA diagnosis.
As you can imagine, that didn’t paint the best picture for me of how a young (I was 29 at the time) single mom of a toddler could begin to navigate the ins and outs of this disease. Meeting other patients has made a huge difference.
I’ll never forget the first time I met someone other than my aunt with rheumatoid arthritis. She had been taking care of my young son in the child care room at the community rec center where I used the gym and sauna. It was a few months after my diagnosis. I sat in the locker room and cried afterward. It was uplifting and healing simply to meet someone who understood. I finally didn’t feel alone.
I didn’t realize how much I needed that until it happened.
Finding and Forging the Connection
Connecting with other patients has been one of the most empowering, inspirational, and healing experiences for me. I’ve found that we speak a certain language together only we can truly understand.
It didn’t take long for me to realize when people with chronic illness meet each other and unite over our shared experiences, it strengthens our patient voice, which builds community and ultimately advances our health care and quality of life.
So, how do you find fellow patients, especially when they might be living with an invisible illness that isn’t obvious from the outside?
There’s social media, of course. You can search for Facebook groups (I manage one called Rheumatoid Arthritis Support) or Reddit threads, or look for people to follow on Instagram or Twitter. This can help you get your bearings and learn a lot very quickly about a large number of people living with your disease. But it’s not the same as connecting with people one on one, either in real life or at least through texts or phone calls.
Sometimes I’ve met other patients by chance, just by being open about my illness. You’d be surprised how many people pop up and say I have [insert some invisible chronic illness] too. These disease are, after all, far too common. Some 40 percent of the U.S. population lives with two or more chronic conditions, according to the National Center for Chronic Disease Prevention and Health Promotion. When you start letting people in your social circle — family, friends, co-workers — know about your disease, you start to hear about others who have the same condition.
Other ways I’ve found fellow patients have been through advocacy and research: volunteering with non-profits, attending fundraising or informational events in my community, participating in research studies, sharing my journey on social media, or attending conferences that involve patients, like HealtheVoices. These are also great ways to get out of the house.
Patient advocacy can be difficult when you have a chronic illness. You have to put yourself out there, which can be hard while you’re dealing with symptoms, side effects, and mobility issues as well as stigmas and misconceptions from others. But when you find others who listen and understand it makes all the effort worthwhile. My time advocating rheumatoid arthritis has opened doors for me to meet some of the most amazing people I could ever be grateful for having in my life but never knew how to connect with.
If you are interested in getting involved in advocacy, check out the 50-State Network, a grassroots community of patient advocates from CreakyJoints and their parent non-profit, the Global Healthy Living Foundation. Join online communities and #CreakyChats, the monthly CreakyJoints Twitter chat. Ask your rheumatologist if they know of ways you can get involved in advocacy near you.
But as you put yourself out there and find other people and groups to connect with, understand that you might come across some of these issues:
The Bad Side of Meeting Arthritis Patients
Connecting with others can have its downsides, just like connecting with anyone out there in the world. Not everyone is going to see things the same way or jive together. Sometimes you get rude and hurtful remarks from others. I’ve come across people who will instantly offer me unwanted advice or drop a medication- or diet-shaming comment. People will compare the severity of their illnesses to mine, saying how my situation is not that bad because I am still young or that I have it worse because they can still work a full-time job and I can’t.
Most of the time, these remarks are said in a harmless way. People don’t mean to be thoughtless or hurtful. But as you put yourself out there, you have to develop a thicker skin and common sense. Not every case is the same and what works for one person may not work for another.
Meeting other patients also forces you to see a lot of the ugliness that disease can cause. Seeing people always in pain, ill, or even facing death is consistently heartbreaking, but it makes you value what you have with new eyes.
As with any situation that involves groups of people, you may come across inner-community cliques. I’ve noticed that people with the same condition tend to stick the closest. It is great that they’ve made those friendships, but not being inclusive of others can make you miss out on some potentially very beautiful individuals. We all learn from each other. So many of us endure similar side effects, symptoms, feelings, and experiences, even if we don’t have the exact same disease.
I’ve also encountered jealousy of publicity, opportunities, followers, or awards among patient advocates. I’ll admit I’m guilty of having these emotions occasionally. Recognition for good work is a very exciting part of advocacy and part of being human. When these feelings crop up, I remind myself that I don’t do what I do for attention, followers, or awards. I do what I do for purpose: to move forward, to help others, to advance the patient voice, and to promote a healthier world with research and awareness.
We should all support each other because, after all, we are stronger together. All of our stories matter.
The Good Side of Meeting Arthritis Patients
Whatever the challenges, the rewarding experience of connecting with fellow arthritis patients is far superior.
My friends now don’t look like the friends I had before my RA diagnosis, when my life was mostly centered around music and clubs. Looking back, a lot of my friendships were built on superficial shared interests. The ones I’ve made through patient advocacy are built on deeply personal shared experiences. It’s a whole different level of support.
It’s common to lose friends and fall out of touch with people as you adjust to life with a chronic illness. Now many of my friends live with conditions like Parkinson’s disease, epilepsy, lupus, ankylosing spondylitis or various arthritis types, diabetes, multiple sclerosis, depression, anxiety, heart disease, or cancer. The list goes on. They’re all different, wonderful people. Our experiences with disease are not identical, but we have enough in common to immediately forge a bond.
Meeting other patients often does come with good advice from those who’ve been through similar challenges.
My disease taught me to express myself, including all that is “wrong” with me. Those who want to be part of my life will like me for who I am and what I stand for. They will recognize my fight against chronic illness while greeting me with support and empowerment. Connecting with other patients has taught me how to stick up for myself and support others, despite our differences.
Advocacy has helped promote purpose and increased my feelings of self-worth. It drives hope and inspires me to move forward.
By connecting, we strengthen the patient voice for a better future. We are stronger together.
Become a Patient Advocate
If you want to be part of a group of people living with chronic disease (and their caregivers) fighting for better access to affordable health care and improved disease awareness, join our patient advocacy organization, the 50-State Network. Learn more and sign up here.
Chronic Diseases in America. National Center for Chronic Disease Prevention and Health Promotion. Centers for Disease Control and Prevention. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm.
Prevalence of Doctor-Diagnosed Arthritis and Arthritis-Attributable Activity Limitation — United States, 2010–2012. Morbidity and Mortality Weekly Report (MMWR). Centers for Disease Control and Prevention. https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6244a1.htm.