Every year, during Arthritis Awareness Month, CreakyJoints and the Global Healthy Living Foundation raise awareness about the nuances of living with arthritis. This year, we ran a social media campaign focusing on arthritis and mental health.
We received hundreds of comments from patients, highlighting the often overlooked mental and emotional consequences of living with chronic pain. They shed light on the struggle faced by individuals with arthritis. It’s not just about the physical symptoms of joint pain, inflammation, fatigue, and decreased movement but also about the mental impact. Many people feel that their family, friends, and even health care professionals don’t fully understand what it’s like to have arthritis.
By sharing the words of these patients, we aim to broaden the conversation around arthritis to include the importance of mental health and emotional well-being. We want to bring visibility to the aspects of the arthritis experience that have been invisible for too long. It is our hope that by doing so, we can create a more understanding and supportive environment for those living with arthritis.
Living with chronic pain takes a toll on the soul.
“People don’t understand what constant, chronic pain can do. It makes you cranky, irritable, and fatigued. It muddles your thinking and makes you impatient. It leads to depression and anxiety and a lack of self-confidence.” — Lisa F.
“There are so many losses and changes in our lives. [Living with] depression and anxiety is a real battle and should not be mocked or written-off as self-pity.” — Amanda W.
“Last year, I was hospitalized to get treatment for complex post-traumatic stress disorder and severe depression mostly associated with chronic illness since childhood. I never knew how bad my mental health was until I received therapy and felt better.” — @arthritisdietitian
“Mindset is more than 50 percent of feeling better or more comfortable on tough days.” — @douglas.e.emerson
“I’m not in pain because I’m depressed, I’m depressed because I live a life with chronic pain.” — @abrewi3010
“Living years with sudden onset pain or inability to be mobile leaves one with anxiety and the loss of trust in one’s body. The arthritis patient is moody, irritable, or depressed because of uncertainty. Telling them to be more positive can often lead them to do the exact opposite. Their mental health isn’t the reason they’re sick.” — @deeptexasfire210
“I full on mourn for the person I used to be sometimes…rheumatoid arthritis (RA) has taken over my whole identity and people just don’t understand. I am so thankful for communities like this where we can express what we’re feeling and know people get it.” — @mrszoeann
“I am exhausted from having to chase doctors and medical staff to look after me and it feels like a full-time job to be disabled by arthritis. That on its own is a huge toll, but then add the pain. It’s unbearable, deeply sad, isolating, and then to have to advocate for myself.” — @principite
Comments like “but you don’t look sick” breed invisibility.
“’But yesterday you were fine’ … Yeah, I lie when [I] say I’m in pain and can’t move the way I did other days…19 years with RA and family and friends just don’t get it.” — @yleanafranco
“The pain is always there but when it’s at a low-enough level I’m able to function to a point and not ‘look sick.’ When you have a day when it’s too high for being able to fully function, there is a reason for it. Since the onset of my RA, I feel very isolated and lonely at times…It’s a lot.” — @tlolson
“When immense pain comes on suddenly, [people say] ‘Oh, so now you hurt but five minutes ago you were fine.’ No, I am never fine, sometimes I just hurt more than others.” — @mrszoeann
“[A misconception is] that it’s all just ‘aches and pains,’ and if you do enough yoga, things will get better.” — @thebumblebeehive
“Some days it’s easier than others. Just because I’m coping well one day doesn’t mean I will be the next.” — @sarah_and_jia
Loved ones do not always recognize the scope of arthritis.
“Everyone seems [to] think they know what RA and lupus is and they got all the answers. I’m just tired of all the cures that everyone swears they have. One of my family members told me don’t put all those injections in you just put mustard with boiled cabbage leaf on my joints and I will be better and stop walking like that you’re young, start doing weights.” — @worldsbesstmum
“I’m 25 years old and my family acts like I’m lazy because I’m unemployed and bedridden a lot. It’s so draining having to be aware of everyone’s opinions of you while suffering through it all.” — @rosy_reads_
“It’s difficult when no one truly understands and the constant feeling that you need to justify yourself — to the point I over explain/over share. The extreme low mood I have when I’m flaring because I’m scared what is happening with my body and don’t know how I will wake up. Living in fear of your body is no joke.” — @bethaneyfaith
“We often get charged with faking pain. Most of the time I’m faking I’m in less pain than I actually am. I also get worried that my kids will grow up resentful of the limitations my pain and fatigue put on our family life. They are only small now so don’t really understand the impact.” — @simonebye
Mental health is often overlooked during medical visits.
“There’s really not even enough time to get your physical symptoms discussed. So I’m thinking about just handing the physician a summary of events and symptoms since last visit.” — Anne M.
“I told my rheumatologist about how fatigued I was and he just handed me a script for meds for my joint pain and left.” — @sarahmontana666
“My rheumatologist would tell me to bring it up with my family doctor. She’s not the type to ask or care, unfortunately.” — @itzcourtneybitch_
“I saw my rheumatologist this week and brought this up. He said I should see my family doctor about any anxiety and depression. I don’t feel like he thinks of me as a person, he only sees the basic RA symptoms.” — @jyindy
Don’t forget the power of self-acceptance and self-advocacy.
“Therapy helps. It’s NOT about your doctor dismissing you as ‘just depressed.’ It’s about believing you, acknowledging that what you feel is real and valid, and it helps to have a professional/objective person to help you cope with how seriously illness affects every aspect of your life.” — @buttahflyk
“My message: love yourself, listen to what your body is telling you, and keep advocating for yourself even when it’s difficult.” — @inezbrandon
“I think I would really post on my bathroom mirror to see each day and say is, not everyone is going understand what you’re going through and you don’t need [to] explain about your RA and lupus symptoms to anyone. Care for your mental well-being right now.” — @worldsbesstmum
“My advice to past me: Your pain is real, even if other people seem to question it or not be convinced.” — @Bexistential
“It is ok to grieve my pre-psoriatic arthritis life. I have to mourn who I was so I can care for who I am now.” — @shannonsmithskinbeauty
“Listen to your body and don’t let medical professionals and naysayers make you doubt what’s happening to you. Advocate for yourself when others don’t or won’t.” — @sfccreativeworks
“Therapy doesn’t make you weak or crazy. It is a great tool that will help you manage your mental health as well as your physical health.” — @stephanie.santosgonzalez
Seek providers who address the mental impacts of arthritis.
“My rheumatologist allows an hour per appointment, and if he doesn’t have an appointment after me, he will let it go longer if needed. I have discussed depression and anxiety with my general practitioner on his instigation. I feel that they are handling it well between them.” — Nerida G.
“She [the rheumatologist] asks how I’m doing mentally every time I see her. After my last major flare (three months stuck in bed), she told me that she thinks I should speak to a psychologist. She’s the best.” — @sarit_charli
“[My rheumatologist] has her patients fill out a questionnaire each appointment asking about my symptoms, rating pain, how problematic some activities of daily living are, changes in family situations, and items we want to discuss. I’m lucky that she knows stress/mental health affects symptoms.” — @annhelvin
“The one I saw the other day asked how my symptoms affect my daily life, which was nice. Normally they don’t.” — @colour_me_jen
“I’ve had many rheumatologists on my PsA journey, and they’ve had wildly different approaches to mental health. The one I have now is the best doctor within my 15 years of chronic illness. I always feel like she cares about me as a whole person — both physically and mentally. During my last appointment, she asked (translated from Swedish) ‘how is your soul doing?’ It made me want to cry with how taken care of I felt.” — @fridatastrom
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.
