Readers Respond: How Did You React When You Were Diagnosed With Arthritis?

Responses: 26

As I wrote in "Arthritis Patients - Fearing the Future": The uncertainty which can consume newly-diagnosed arthritis patients leads them to try to obtain a prognosis combined with some measure of reassurance.

Think back -- do you remember how you reacted when you were diagnosed with arthritis? What was it like to hear the words -- "you have arthritis?"

"I am too young for THIS!"

I was diagnosed fairly quickly. The week before I turned 21. At first I was relieved to have a name to put with the pain and fatigue. And then I went through denial. :) Eventually I've come to accept that this disease is going to be with me the rest of my life, there will be a lot of bad days and some good days too. So as long as I just keep going and don't give up... that's what matters most!

—Guest Guest

cried and cried

I was 30 with a six month old baby at home and I could no longer open any baby food jars. I remember after going through lots and lots of tests and trying different meds, finally seeing the box get checked for RA instead of the other options on the check out form. I went to my car and cried and cried. I am still brought to tears at times. I can no longer go upstairs to tuck my little girls in to bed, but I am fortunate enough that I can hug and kiss them good night. As I am writing this, my "baby" is now 10 and sitting next to me with a sore foot from too much dance. Oh, to be sore from such a wonderful thing like dancing! It is a tough disease to live with, but it has been ten years and I thought I would have been worse at this point than I am. Shoulder surgery is next. I am at the point of trying to relieve pain and staying in motion for my family. However, I teach kindergarten and those little ones keep me on my toes and help me to forget any pain during the day. Smile!!!

—Guest Alesia

Scared and Relieved

i was diagnosed with r.a just a year ago,i had the bad pain and had short of breath and chest pain,went to my pulmonologist and he said it was a lung disease and it was pulmonary fibrosis but caused by r.a,so he sent me to see a rheumy and did the test and it was positive for r.a,it had taken over my lungs and the pain is excruciateing at times,i take metho and vicodine for pain but it dont seem to help,i have the pain all the time and have to use a walker to walk and before long was told i will be in a wheelchair,but til that day comes i deal with the pain and take my oxygen and get thru my days with all my support,my boyfriend has been a big part of my life and support since my diagnosis.

—cheryld1965

Resigned to Having It

I still vividly remember the day I found out I had arthritis. For 13 years I went from specialist to specialist ending with them telling me that they did not know what was wrong with me and that they could do nothing but prescribe pain medication for me. Then in 1996 I went to a new doctor in town, who instantly ordered a MRI on my back. A few days later they called me to come into the office for a consultation. I was 33 yrs old. I left the office in shock. The moment she told me that it would never get better and that it would only get worse was indeed the worst day of my life. My mother was waiting outside for me and I just broke down in her arms. I could not imagine at this point living with this each and everyday of my life. But here I am 13 yrs later somehow living my life, it has since spread to both hips my right foot and fingers on both hands. My doctor and I continue to work on a safe healthy treatment for my disease and I have since resigned to having it the rest of my life.

—Guest Leslie

glad to have answers

ok that may seem weird but my first reaction was being happy that it wasn't my imagination. My next inclination was to learn everything I could about the disease. I deal best with things when there are no suprises..research is one of my coping mechanisms.

—tyshuman

Cried

I cried all the way home from the doctors office,all I could think about was an uncle when I was a little girl,he was in a wheelchair and his hands were all mangled up! He has ra!

—Guest Teresa

How did I react when diagnosed with RA

At first I didn't know the cause of so much pain on my joints. I could hardly walk downstairs and on one occasion I was dragging myself instead of walking downstairs. My wife was saying "You're being lazy". The pain was horrendous. After some blood tests my GP confirmed that I had RA. My first reaction was crying followed by looking at my wife's face thinking "you were wrong! I knew there was something wrong!". I then started to think Why Me? What have I done to deserve it? And now, what am I gonna do? I couldn't bear the shock and the slap on my face. At work my supervisors thought it was temporary illness (like they do with pregants) and that I could work somewhere else, but I didnt want that. All those years, looking ahead, working hard and planning a change on my carreer, had just gone down the drains, like water on my hands. I still cant get my head around it after 30 months. I am now 47 years and have no aspirations. Just like a plant fed with only water... nothing else. Lonely.

—Guest PC Jose - UK

Memories

This question brings back memories. I am 55 now and was in my mid to late 20s when I became symptomatic. Tests were so tiring I gave up for 2 years before diagnosis. Eventually RA sent me back for more tests or to start fresh. The phone call from my doctor left me with pictures in my mind of how I would become mal-formed (young). Then came disbelief, rebellion, and acceptance. Now, my body is not in the best of health but acceptance has made me mentally and emotionally healthy.

—Baxter1

Denial!

Denial! Denial! Denial! I was 15 and I couldn't and wouldn't accept it. I would rather cover it up, and my mom didn't help either. She wouldn't even say the name out loud. It took me over 3 years to come to terms with my RA and I still have my bad days here and there... My suggestion, take it easy. Don't fight your feelings, somehow it will fall into place.

—karin.geitner

Total Denial Until...

Like many others have shared, it took a long time to get a correct diagnosis so when I did I was in total disbelief. I stayed that way for over a year thinking that my doctors would realize they had made a terrible mistake and that I didn't have RA. I finally had to admit it to myself when my rheumy said I needed to get more aggressive with my treatment to stop the damage being done to my joints from years of un/misdiagnosed active disease and my surgeon informed me that I needed bilateral knee surgery. Thats when the seriousness of the disease and fears for the future began. I have since learned that I have to start paying attention to what my body is telling me and thanks to new meds I can have a new "normal" life filled with happiness, joy and hope. Yes, even hope. But it took a lot of soul searching and facing the truth to get to this point. Now I find out all I can about RA, new/alternative treatments and thanks to wonderful sites like about.com I am no longer in denial.

—Cynvee

Waiting to meet Rheumy

As I was diagnosed with CFS and Fibromyalgia and osteoporosis in the last 7 years, and osteo since I was 15 I had a hard job persuading doc I had something different that was causing my hands, feet, ankles and knees to swell and be extremely painful. I also get fevers. Eventually, after 4 months, he has referred me to the rheumy dept. Guess I feel relieved but a bit scared of taking more medication. I don't really know what to expect as everyone's experience differs. Got to remain positive for my daughter and four wonderful grandchildren.

—NANNAPINK

Panic, Overdose, Collapse, Resiliency

I was consumed with sudden onset joint pain at age 50, after living a relatively healthy life. The rheumatologist who saw me stated unequivocally after a brief clinical exam that I likely had Polymyalgia Rheumatica and that I could have Arterial Artritis. Based on the possibilities he prescribed a high dose injection of corticosteroids and a daily RX. He also claimed I could become totally and irreversibly blind if I did not do this. That last possibility panicked me. I followed this regimen for 9 mos when my family Doc recognized that I was suffering from tachycardia, and other side effects. He hospitalized me immediately. 5 different specialists came in to treat this condition and slowly decreased steroids. Despite the Drs' care, I had a complete physical collapse which left me unable to move & care for myself for 1 year+. Under a new rheumatologist I began a slow recovery which included a "cocktail of meds" + water therapy. 12 years out, I am coping, but quite limited walki

—Guest Suzanne

Book

I would suggest reading the book- Healing Pain by Ann Berger. It was a wonderful resource and helped me greatly.

—Snoopy4500

Stunned

I had been sick for 2 years before I found out it was RA. When I was diagnosed I was stunned. I thought I was too young to have it. It took a long time to get my meds right. Sometimes the side effects from the meds were worse than having RA. Later I was also told I had fibromyalgia. I was in a deep depression for a long time. I am now beginning to come out of it. I am presently seeing a therapist and taking antidepressants. It has been a long road for me and I hate having my family deal with me and RA.

—Snoopy4500

Devastated

I was just devastated...it was actually a relief finally getting the diagnosis because at least I now knew but then the the reality of it set in. I cried.

—fallenangelic