Living with chronic and often invisible diseases means that what the world sees and what you actually live and feel can be dramatically different. Many CreakyJoints members live with invisible illnesses that make them appear healthy on the outside while, behind the scenes, they struggle with many aspects of daily living.
That’s why this Arthritis Awareness Month, we wanted to ask about those “As NOT Seen on TV” moments — the true reality of coping with arthritis and related chronic illness day to day. Our community’s responses were eye-opening. If you’re a person living with arthritis, they will speak to you. If you’re caring for someone managing arthritis, or a health care provider treating people with arthritis, they will help you better understand what others are going through.
These sentiments, curated from thousands of comments and submissions, are a must-read.
Arthritis Means ‘Normal Days’ Have New Meaning
1. “The best days for me are just getting the ‘normal’ stuff done. Making dinner for my family, finishing some laundry, getting my daughter to school and practice. Those are my happiest days.” — Stacy B.
2. “My good day means that my pain is not at 10. Maybe just a 6 and take advantage of it. Although the docs tell you not to overdo it on good days, I can’t help it. I have so many bad days and I’m so far behind … Gotta keep doing things ‘til I collapse. My mindset is not going to change. I tried. I can’t. Living in a messy home with no groceries doesn’t work for me.” — Elizabeth F.
Arthritis Means Stress on Your Social Life
3. “You push through the ‘must dos’ like work and cancel the fun things like dinner with a friend because your energy doesn’t stretch that far.” — Catherine R.
4. “You have to drag yourself there and put on a ‘I’m awake’ expression.” — Sonia W.
5. “It’s taken a long time to get through to friends that I do have bad days and if I cancel it’s not personal, it’s because I’m in pain. I only spend time now with the people that understand this.” — Jayne B.
6. “People don’t understand. And do not believe you when you say that you cannot make plans or have to cancel or do not know what time you can be ready. Yesterday was an ‘ok’ day for me; today is horrible with intermittent flares. And I did not do ‘too much’ yesterday. Such is the life of a warrior.” — @docmaw_co
Arthritis Means Feeling Like a Failure Sometimes
7. “I feel like I fail my family every day. I’m working on the acceptance part of the illness. Haven’t gotten there yet.” — Lindsey S.
8. “It’s so hard not to able to be there the way you would for the ones you love if you were well.” — Alberta O.
9. “It constantly feels like I use my arthritis as a crutch when really I’m just trying to survive most days.” — @littledub13
Arthritis Means Coping with Pain
10. “On a scale of ‘1 to Lego’… I am walking on Legos.” — Judy P.
11. “Never knowing which joints are going to cause the most pain today. People even family not understanding that.” — Anita W.
12. “Sometimes, the pain is so intense after sitting, I can barely walk. It takes about 10-20 minutes to return to my new normal.” — Yvette S.
13. “I just say to people the pain feels like I’ve done five rounds with Mike Tyson.” — Marcus B.
Arthritis Means Your Sleep Is Never the Same
14. “I can’t remember what a solid eight hours sleep feels like. It’s as though my brain is rewired from pain interrupting sleep for so long and I don’t know what ‘normal’ is anymore.” — Jenny H.
15. “If I get more than three hours solid sleep at a time it’s a good stretch.” — Janine T.
Arthritis Means More Planning
16. “Travel is just too difficult anymore. Not just equipment, but the ongoing fatigue, my hands don’t function good and neuropathy in right leg. The pharmacy & grocery is about all the traveling I can handle. Hard for others to understand.” — Lyn M.
17. “Webster packs. Extra ‘just in case’ meds for PsA flares and Meniere’s disease episodes, which are triggered by flying. Doctor’s letter and prescriptions so customs doesn’t think I’m a drug mule. Heat packs. Humira injections in thermal container. My pillow. Neck pillow for sitting in planes. Diazepam for flight anxiety and car sickness. Naproxen for hip pain from too much sitting and knee/foot pain from too much walking. Nexium for stomach problems as a result of Naproxen. Sigh. So all up, we don’t travel much any more, which is a shame.” — Carole H.
Arthritis Means the Weather Affects Us Differently
18. “I used to love rainy days, but now I feel so awful on them.” — Sally P.
Arthritis Means Naps Can Be Essential
19. “One of the first things my rheumatologist said was ‘listen to your body.’ She was correct.” — Barbara W.
20. “Napping in the afternoon keeps me sane. My whole fucking day revolves around that 1 hour of sleep and I make sure I don’t miss it for anything in the world. — @vidushimayor
Arthritis Changes Your Fashion Options
21. “The one thing I miss the most is wearing shoes — heels never higher than 4 inches; my guilty pleasure. In the spring and summer, sandals are a joy, but I dread the arrival of cooler weather, socks and shoes.” — Yvette S.
22. “I’m constantly fighting with my shirt buttons and the gas cap each time I go to fill up my SUV. It’s frustrating, but something I’ve gotten used to.” — @adventuresofaspooniemom
Arthritis Changes Your Career
23. “I’m a RN, and used to think I was fairly ‘marketable.’ Anyone know of a career that doesn’t require hands, feet, and focus?” — Elizabeth O.
24. “Sometimes I feel like I work to pay for my health and then spend every weekend in bed recovering from the weeks work. No life, no money and in energy deficit too.” — Angela B.
25. “Coworkers think when I send them an email it’s because I’m too lazy to walk to theirs desks; what they don’t know is that my ankles hurt with every step I take.” —@jennie.lynne
Arthritis Means Being a Good Actor
26. “I should get an Emmy award. When I have ran out of pain medication and have to keep it together in the pharmacy.” — Greg T.
27. “I try not to complain. I smile at work. I tell others I’m fine (but that’s not the truth.) My job is a ‘People Greeter’ at work. The one comment that I truly despise hearing from people is ‘Don’t work too hard.’ Little do they know how hard it is to stand all shift — seven to eight hours a day — with the pain I’m in. I try not to let it show. It’s almost unbearable at times.”— Elaine C.
Arthritis Means Others Don’t Get It
28. “My kids keep telling me I need to go and jog around the park. I can barely make it to the bathroom and even then I need hubby’s help. They don’t know how much their words hurt me.” — Irma S.
29. “Mention your symptoms, watch the veil drop and the disconnect. People in general aren’t interested. They’ve got their own problems.” — Carole H.
30. “I stopped explaining it because they just don’t get it.” — Elizabeth F.
31. “People don’t understand this is an autoimmune disease; we don’t choose to be sick, but flare-ups happen and they affect our lives sometimes to the extent of not being able to get out of bed.” — Diane D.
Arthritis Means Losing Your Independence
32. “People don’t get how very little I can do for myself. I can manage with some basic things but it’s increasingly difficult to be independent due to the pain and weakness. When I can get out by myself it feels like a vacay.” — Janine T.
33. “Retirement is not at all how I planned it would look. I envy those that can travel, hold their grandchild, clean their house/home and go shopping, just to name a few things.” — Michele H.
34. “It’s wondering, ‘Why are my hands so painful this morning?’ And then remembering trying to open that jar of spaghetti sauce last night.” — Ruth O.
35. “I have invested so much in things that make everyday normal tasks easier for me because I struggle so much. I even buy individually packaged food to make it easier or ready to eat foods.” —@lizdenas
36. “What gets me feeling sad and scared is when I’m too weak to shower. Such a small thing that can make us feel so much better, but I’m terrified I’ll faint or worse.” — Roz T.
Arthritis Means Knowing What Fatigue Really Means
37. “I’ve had to learn how to budget my energy. A way of life now.” — Carole H.
38. “My worst problem is fatigue: I need all my energy just to get through my eight hours of work and when that’s over I have none left to do anything else. Rhe majority of chores and housework have to be done in the weekends and as for fun or socializing, well I get tired only thinking about it. I’m still struggling to accept that’s my life now.” — Elena K.
39. “The fatigue is getting worse for me. It’s robbing me of the energy I wanted to use on all the projects I had planned for retirement.” — Beverly K.
Arthritis Means Your Mind and Body Change
40. “If my knees didn’t creak how would you know where I was?” — Leopard B.
41. “I avoid looking at my deformed hands. People don’t realize that when I get a glimpse of my hands throughout the day, I’m holding back tears and sometimes go to the restroom and cry. I don’t even recognize them.” — @rachpres10
42. “When I am doing my house cleaning, I sound like the Rice Krispies commercial: snap, crackle, and pop.” — Mary E.
Arthritis Means Accepting Unpredictability
43. “Pain doesn’t go away, it just moves. Not knowing what will be hurting next.” — Wanda H.
44. “There’s the rear that even though my symptoms are under control now, they will return one day. That fear tends to come forward in every big decision.” — Catepoo
45. “It feels like I am on a roller coaster today! I feel ok than I feel horrible.” — Kathy H.
46. “After going through all the hurdles to get medication, there is no guarantee it is going to work and in three to six months I may have to go through it again to get the medication changed.” — Lindsey S.
47. “Flares can take me by surprise. Literally from one minute to the next between pain and no pain.” — Carole H.
Arthritis Means Parenting Challenges
48. “Being a mum to three young children and having RA scares me, because each day I don’t know if I’ll be able to do the job of a mum so my kids aren’t suffering from this disease also.” — Kathy P.
Arthritis Means Saying No
49. “I think for me the ‘As Not Seen on TV’ is all the things I want to say ‘yes’ to but have to say ‘no’ to.” — @arthritis_life_cheryl
Arthritis Means Mental Health Is Affected Too
50. “I don’t think anyone realizes how depressing it is. RA robs you of your life. Some days I can’t even hold a glass to get a drink. I used to go-go-go 10-hour, 12-hour days. Now I have to take a nap after just getting a shower. The fatigue is unbelievable. The pain is awful; some days, gravity itself causes pain. SERIOUSLY. More often than not, you’re all alone. Friends stop calling, inviting you to go places. They don’t really understand, because you look ‘normal!’” — Veronica W.
51. “The depression that springs up from constantly hurting but I put on a mask so to speak. I look good and happy — nope.” — Brenda P.
Arthritis Means Having Hope Despite All the Challenges
52. “I find things, even small things to be thankful for and small things to make me happy and give me pleasure. I read a lot — good clean novels — and get lost in them. I try to think of others and help others. I look around and can always see others who are worse off than me and be thankful. I pray too. God answers prayers.” — Elaine C.
53. “I have great faith and positivity and a sense of humor, which serves me well, but sometimes it just gets tough no matter how well I seem to cope with this dragon that has been with me for 33 years.” — Janice T.
54. “I’m grateful though because I have become an even better person due to the lack of compassion and empathy from others. Something that I don’t lack, thankfully.” — Michelle S.