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

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.

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

Shaking hands

Shelley mentioned how painful it is to shake hands and what to do gracefully. I usually keep my purse or a book in my right hand against my chest and that way I can extend my left hand upside down (little finger side up) in a way they can't easily squeeze it. My hands are visibly disabled from RA so usually they understand but not always.

—Guest Bon Crosby

Vicious cycle

I am 59 years old and was diagnosed with RA less than 2 years ago. I am a production worker for tire company and have been for 15 years. The job itself aggravates my RA, but without my job I have no insurance. Even if I find another job I have a pre-existing condition. I'm single and have no other income. So I work and flare and spend my days off trying to recuperate. My job won't understand my missing work and a new job won't insure me. Hence the"vicious cycle". Not only do our friends and family not get it but employers don't even want to hear it. Work and a new job not insuring me . itself activate my condition.

—Guest Jojo

Change the name

I think rheumatoid arthritis should be renamed. I think that's where the confusion lies for most people. They don't understand it's our auto immune system destroying us. The everyday pain and fatigue along with the side effects of all the meds is devasting in itself. Most days I just want to be left alone so I don't have to hide my pain and just rest. I was very active until a yr and a half ago. I'm ready to be the old me again and I know that probably won't ever be.

—Guest Rachelle63

Babies can get RA too

I was only seven when I was diagnosed with rheumatoid arthritis. What I want people to understand about this disease is the way the symptoms change all the time. Some days I cry because my toes and fingers hurt. Some days it's my hips and knees and I can't sit still long enough to soothe the pain. Some days I am just in a full body dull ache and just don't WANT to get up. Some days I CAN'T and some days I even feel great with no pain. This is an autoimmune deficiency. My body is attacking its own joints and there is NO cure for this disease. And I can't ever tell when I'm gonna be in pain. Unless it is raining, in that case it's guaranteed that I'll be hurting. I just want people to understand that this is painful and we are not faking or being lazy. Bet you didn't know that RA could cause infertility and even fatigue? These are the things we struggle with every single day, and we will continue to fight everyday. It's a struggle so don't judge us. We don't judge you.

—Guest raelou

Tiredness & pain is wearing me out

I've had RA for 10 yrs now, diagnosed at 16, I have had very bad periods & good periods, however at the moment I just feel lousy. People think I'm lazy or being silly but seriously people just don't understand how it affects you, it's not only the pain we have to put up with but the lack of sleep when it hurts too much or the tiredness which I'm feeling today. Be so nice if people did understand but unfortunately it's only us that do.

—Guest Jene

Symptoms of RA

I wish everyone would understand that with RA we don't always have sore joints on both sides at the same time. I am usually sore on one side only. My RA started 2 years at least before diagnosis with one painful red swollen right ankle & because it was one side only the doctor said that even though the symptoms were those of RA; she could not say that it was that as it was on one side only. Two years later the RA showed up with pericarditis & pleural effusion. I lost 2 years when I could have had treatment & my right ankle is permanently swollen & painful most of the time.

—Guest Dorothy

RA

My family doesn't understand the pain, stiffness, tiredness to joints. They think I'm lazy and don't do nothing. They have no clue, they blame me for my illness, that I didn't look after myself. Even explaining to them they still don't understand. It makes me really sad and unhappy.

—Guest evita

I didn't ask for this either

I've had issues since I was 12, and diagnosed with RA at 28. I had a family friend who was crippled with RA. Most recently remembering her using a drafting chair while cooking, has helped me get over standing too much myself. I also have a preschooler. He sits still for maybe 2 sec, max. Yet he comes up, kisses my arm, strokes me and asks "Mommie all better". I have days where he does get to watch tv all day, and we have days that are playdates, trip to the zoo etc. Some of the meds makes me very sick, am back on mtx and so not having fun. My kitchen is full of things that makes me able and hubby is well aware of how limitations fluctuate from one hour to the next. I hate being stuck in this body that's bailed on me. I hate the meds, the injections I have to do, and how many have good "advice" that worked for them. If I could, I'd use your cure and stop giving myself shots costing a fortune every month! I have the RA, my husband and boy help me love my life. Sick or not.

—Guest Raisa

If only...

My RA is also very painful daily and most days as others I push myself to keep going, it's the tiredness and constant pain either awake or asleep it doesn't seem to matter. If only I could feel better....

—Guest gail