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Readers Respond: What Do You Wish People Would Understand About Arthritis?

Responses: 43

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Updated July 09, 2012

People with arthritis often get discouraged and say, "My family doesn't understand", or "My friend doesn't get what it's like for me". Family and friends aren't trying to be difficult or lack compassion. They truly don't understand.

If someone doesn't live with arthritis, it's hard to understand exactly what it's like. Remember the famous Elvis Presley lyric? Walk a mile in my shoes, just walk a mile in my shoes."

What do you wish people would understand about arthritis that you think most don't understand? Here's your chance. Tell people what they need to understand about arthritis that you think they don't get.

Tell Us What You Think

Still me

I might not be able to play sport, or do all the things I did but I'm still me. People get too upset when they see how much I've changed & all the things I can't do. At the beginning they thought I was just making it up or it would go away. After more than 15 years the pain & tiredness only got worse. Sure they feel sorry for me but they help out once or twice & then it's too hard for THEM. I'm no longer asked to contribute or help out, treated like I have nothing to offer or want to hang out. I have the same characteristics like being positive, happy, never give up, trying new things. I am no less of a person & I deserve respect & dignity. I love my family & friends but people that have never suffered or been sick just don't know how to behave around you
—Guest Tash

Thankful for family and friends

I just wanted to say how thankful for family and friends because they seem to know what pain I am in more than I do. I always try to ignore it & by doing so I do more harm to myself. I have had arthritis since my early 20s and this is the first time I have even looked into it. Thanks for the wonderful articles. I have learned that I have been very hard on myself & it is not my imagination & I am not a wimp.
—lfizzell

Born with RA

I have had RA my entire life. Most of my childhood memories are of me crying myself to sleep because I hurt so bad. Trying to be "normal" and riding my big wheel or playing with others would kill me. My parents thought it was just growing pains and would tell me to be quiet and go to bed. Finally, at 14 I was diagnosed with RA. I finally had proof I wasn't "being a baby" and that I wasn't crazy. I don't blame my parents, who would expect a kid to have RA. Throughout my life my pain has gotten worse and worse. I walk most days but it is getting so hard to get up out of bed. I am exhausted all the time. My wife is sick of me and thinks I am lazy. I try to explain it but I feel so guilty that I am wasting her life because she should have someone whole to share life with. I hate being called lazy or being thought of as playing some game because I WANT to just stay in bed. I DON'T WANT to be in bed, I WANT to be NORMAL for once in my life.
—Guest Eric

I'm hanging on for dear life

I am 39 and was so full of life. I worked out daily, trained 4 times a week in MMA, and never stopped doing things. Now it’s a good week if I get one day out of bed. I have one friend who gets it, my family not so much. Doctors afraid to prescribe any kind of pain meds, and Celebrex is so expensive I cannot afford it anymore. Losing my home and job because the RA has become severe. I have tried to explain it to my family but they don’t get it, not even close. I have always been a fighter and nothing I have not overcome. But this might be where I throw in the towel. You think with all the technology that they would have better treatments.
—Guest That guy

Young and miserable...

At 50, it hurts to stand, sit, lay down, bend over, reach up, get in and out of the car, open jars, type, carry grocery bags, do big or simple chores, etc. I do all I can to work 40+ hours a week. In 3 years time, I went from having an immaculately clean home and maticulously manicured yard to the total opposite. People notice the change, but no one has reached out to help. I am the caregiver for my family, friends, and colleagues, which makes it difficult for me to rest and deal with my conditions. People know me as the fun-loving, always available and helpful person. When I say I am tired and in pain, I feel pressured by others. I do my best to look nice when I leave the house. Most days it hurts to bathe, put on clothes, or to be touched. Pain radiates thru my body from the bottom of my feet to my neck. Feels like it hurts for my blood to flow thru my body. Methotrexate, Savella, and even Aleve 2-3 times a week don't help relieve my RA, fibromyalgia and Sjogren's.
—Guest Joney

OH... so many things!

1: Young people get arthritis too! 2: Arthritis is more than just "aches and pains". It's fatigue, anemia, joint damage, eye damage, and can affect the internal organs. 3: A day with arthritis is sort of like a day with the flu. Joint pain, fatigue, and for some people (like me) maybe even fevers. 5: We appreciate your concern and advice, but please, unless you're a rheumatologist, don't tell us how to manage our disease. Most of us are pretty good at it, and have health care providers to help us. 6: Please understand, that with arthritis, you never know how you'll feel from one day to the next. It's a crapshoot. 7: Arthritis (or any disablilty/chronic illness) is by it's nature isolating. PLEASE, include me in your plans and invite me to participate as you would anyone else. If I can't join you, please think of me for future outings. Isolation is the worst part of chronic illness/disablilty, and the most painful. Be my friend and INCLUDE ME. Thanks!!! LYNNE
—lynneyvonn50

RA Pain

My pain started about 5 years ago. During that time I noticed that my hands, feet and legs would be hurting So badly that I really couldn't get out of bed. It would/does take me a good 30 minutes to wake up and crawl out of my bed to the bathroom. I never feel rested. During a flare up all I can do is stay in my bed and rest. The toll it's taken on my self esteem and on my marriage is the worst. My husband of 25 years left me because I'd gone from a beautiful, fun-living wife to a tired person in chronic pain. He couldn't understand and decided to leave me to pursue a fun-filled life without me bringing him down. Now, I isolate in my bedroom and pretend like I'm "fine". I'm NOT fine and I thought I married a man who would be with me in sickness and in health, the good times and bad. I guess not. All I wanted was a bit of understanding and some assurance that I would never "make this " up.
—Guest Mzkitteh

Just read all these posts ....

I see and hear myself in all of them, especially the ones relating to fatigue. I can fight through the pain, but sometimes the fatigue happens suddenly and I have to go to bed, usually sleep for about four hours, sometimes more, rarely less. I also relate to not being able to make commitments and having to cancel things. I don't even try to explain anymore, just say I'm having a "bad day". I just wish I had heard all of this when I was first diagnosed. RA, OA, fibro and a recent bout with Lyme run my life, not me, but I have finally just learned to "go with the flow". It's not going away.
—Guest Helen Alicia

Pain is secondary to the lack of support

When I was diagnosed with Ankylosing Spondylitis, I was 40. I had been a division one athlete, power lifter, and competed in Strongmans - very active. All this stopped. In addition to my degenerative arthritis, I now had this new thing to contend with. My fatigue was horrible (and still can be during a flareup) and my friends and family just didn't understand. They all thought I had become lazy overnight. It has been six years, and things are better - but will never be the same. My medications still have to be changed and adjusted, and they all lower my immune system. I just lean on my wife and family for support, but it has taken years for them to fully understand. I also take advantage of the good days, and try to be as active as I can with them without over doing it and causing a flareup. I guess I would suggest this to anyone with this disease. Learn about it first. Don't assume that your friend or love one is just lazy or faking it.
—Guest Trint

Living with it

It's tough on me that I can't do sports with my kids. I was an active athlete and a commercial fisherman in Alaska for 11 years. Which is like 50 years to most jobs. The depression from the pain and activity loss is what is worst for me. It tears on your spirit. Makes you feel worthless. I would love to be the old me also.
—Guest Bob

Feeling SO ALONE

For me one of the hardest things is that I always feel so much loneliness. Mostly because no one understands anything about my life of constant anxiety, extreme pain, worrying EVERY SINGLE DAY, that I'm going to get fired because I absolutely have to push myself out the door to make it to work, hoping that when I get there I'm not going to be told that, I'm fired. Then crying for most of the morning in my cubicle in pain because it is invisible to everyone, even my pain management doctor. She refuses to listen about the level of my pain. That causes me to REALLY feel lonely, when even my Doctor really doesn't know what it's like, how can she help me? I hope and pray I don't get fired from my job because then I will have no insurance and then I will really suffer in pain and won't be able to move at all!
—Guest Tracy Simeri

The smile hides the pain...

Pain. Chronic joint pain. Exhausting chronic pain. And the fatigue! My life is reduced to nothing but trying to get through the workday and then recuperating from the workday. Every. Single. Day. Quietly coping.
—Guest WearyMom

Insanity

I have been diagnosed 4 months ago after months of pain ...people won't understand why u have to walk drip slow before them or why I simply can not bake your cake anymore being only 29. I hate every moment. I used to be so active it's so easy for then to tell u u have to keep active if u ask them have u ever had RA wow well guess what the answer is.. No ofcourse they havent. I didn't have much talent in life but boy I could sing but got kicked out of choir cause my voice has been effected. I hate it so much. I can't talk 50 words with out losing my voice.
—Guest gezina

It is real, and it hurts

The pain and the horrible fatigue that arthritis can cause is something more people understood. If I had arthritis before a bad car wreck in 2000, I did not know it; I've known it since the wreck. More people understand it, but don't want to face it; I guess it makes you look weak. My husband will sometimes ask why I am hurting, and I tell him; men DO NOT listen when you explain something like this. As I sit here and write this, I am reminded to print material out for him to keep and read; he asked me to explain my form of COPD (bronchiectasis) to him, after I had already printed material out for him. At the workplace, a person with any type of arthritis is looked at differently than those who don't. One time I tripped over some cords and fell on my knees; a coworker asked me if my knees caused me to fall, and I told her no. Some people don't believe, if they can't see.
—Guest Pammy56

Osteoarthritis and Fibromyalgia together

I see where RA is being commented on, but have been diagnosed with OA and FM; I have the symptoms of RA but doctors won't say it's that. When both OA and FM flare, I could swear I was just beaten up physically. I do take meds to ward this off, but some days only a heated mattress pad will do. My husband has been wonderful, but still asks me why I am hurting; he knows I take medicine to be able to work (40+ hours per week). I have to remind him that it is the FM, and the OA after standing too long. Since I can't take anti-inflammatories, and the rest of my laundry list of health problems, no one will operate. I asked a doctor if I was looking at crutches by age 60, and he said that I was; I had already come to that conclusion myself, but needed a specialist to tell me. The OA is all over, and my back is like a snake from scoliosis. So I understand the frustration all of you have.
—Guest Pammy56

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What Do You Wish People Would Understand About Arthritis?

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