10 Things I’ve Learned From Living With Chronic Illness

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.

Comments 105

  1. Vicki

    “When it comes to treatment options, though, I will be the final decision maker.” Bravo…I finally got my Rhemy to understand that I would not just lie down and take whatever meds she thinks are the “new best thing.” It’s my journey, my pain, my life. I get to choose what I think I need…

    Keep these things coming…sanity with RA is hard to maintain!

  2. Janis

    Great list! Thanks for the reminders. It took me a very long time to learn these, and I can always use the reminders.

    And #1 is priceless.

    You have my thanks and admiration RA guy. You are so wise and right on.

    I look forward to your next adventure.

  3. Katie

    Thanks so much for this article. A year ago I was diagnosed with EDS and POTS and have learned, or am learning these things along the way. You have a great site. I posted the article, with the link to your site on http://www.lifeasazebra.com. I think everyone should visit.


  4. KathyB.

    I read your blog to help me help my husband who suffers from RA. I appreciate your words here in this post, they help me remember what he does not say…he is not a complainer, and often after a hard day’s work, when helping me around our small farm, he will retreat to his study, to his recliner. I hope I have made his study a retreat of warmth, comfort, and am able to remember even if he isn’t complaining, he is in pain..and needs rest. Thank-you.

  5. Joanne C

    This is such a wonderful post. It covers everything. RA is horrible, but don’t ever give in to it!

  6. Alison

    I saw your list on Toni’s Facebook page. I also live with a chronic illness & I couldn’t agree more with all of your sentiments.

  7. Lana

    Great post RA Guy. Embarrassingly enough, Number 8 is one that I have learned pretty well and through much stumbling. In the beginning when I started advocating, I found myself bothered by the emotions of others living with chronic illness. I didn’t really understand why some people especially those in less pain than me dealing with this emotionally worse than I was even though I was in more people. Through some understanding and researching on pain tolerance and the variety emotions related to chronic pain, I got myself out that mindset. My pain and my emotions are mine alone and the same applies for everyone else. All the lessons you have gotten from living chronic illness, I have also learned them and many, the hard way. I always think about the first year after diagnosis and how much I have grown up from that. I sometimes want to tell new sufferers the truth but then I realize that these are things we have to learn on our own by struggling, stumbling, and just looking for answers and they are things that are personal. And even when we think we have it all together, someone happens that we didn’t expect, i.e. a flare-up charged with emotions and confusion – those are fun, aren’t they?

  8. Brandy de Cusack

    Another awesome explanation and description of living with this rotten disease. As well as taking comfort and strength from your posts I use them to explain to friends why I am the way I am. You do it much better than I do.

    But I do like taking my anger and frustration out on people: my characters :o) (and ignorant commuters, selfish and dangerous drivers, people who park in disabled spaces without being disabled and anyone else who tries to trip me up, push me out the way or grab the last seat on a train).

  9. Ann

    Of all the listed side effects you never get the one you could use. IE I could use some of the weight loss but instead I get the hair loss. GRRR The next question always is; Is the med working well enough that I will put up with the side effect?

  10. Jacque

    Wow. Thank you so much for saying everything that I have ever wanted to say all in one blog!! I have printed this out to give to friends and family who are having trouble understanding. Please keep these posts coming. We’re out here and we love the support and acceptance that comes along with seeing posts like this.

  11. Elizabeth

    Thanks RA guy. I didn’t understand why I was so tired all the time. I never connected the over active immune system using up all my energy.

  12. Steve Fadden

    This is wonderful! Thanks for posting this, and please know you’re in my thoughts!!! -Steve

  13. Rosemary Delarosa

    I also have learned to deal with pain,and/or make a deal with my body (spinal stenosis is causing major numdness on right back, buttock ,thigh ),when to spend my energy (when my pain is less) then I tend to overdo. I wish I could have more GOOD days, than I have bad.

  14. fridawrites

    Balancing #1 and #2 can be difficult–my tendency at first was to do too much #2 and then be forced to do #1. It’s taken me a while to find my limits, though I still push against them and sometimes do way too much, as I did yesterday. More difficult is that other people argue that I need to do more, not realizing the bounceback to the rest stage and that it’s a fine balance and not my preference. It’s not my preference at all to do less! At all.

    #8 was difficult for me when I became a scooter/wc user because I was so ill and except for dr. appointments and kid concerts 100% bedbound. The people complaining were far, far better off–still able to work, parent, go to activities. Now I can let it go. We all have our struggles, and maybe they were at the point they needed to cut back too–it’s very difficult to experience loss. And some of them had doctors who were really not empathetic, or spouses. It’s hard when other people blame you, especially those whom you most need support from.

    I have to ask myself, why should it bother me if others are struggling more with less illness? What is it that bothers me about it? It’s complicated and I’m not sure I have the complete answer.

    I like all of these. I think you bring a lot to people with arthritis no matter whether they’re brand new to all of this or have had it for decades.

  15. fridawrites

    I should clarify I don’t mean anyone here–I mean others with spondy who hadn’t had to slow down at all yet right when I was giving up everything I had worked so hard for. Maybe it’s that I felt they conveyed theirs was worse since they were still fighting on so many fronts–someone said I was lucky because I got to sit at home all day.

  16. Sabrina

    My friend posted this on Facebook and it really helped me today. I have MS and deal with pain and other effects everyday. Thanks for the reminder that I don’t have to make excuses for the disease I can’t control.

  17. Melissa

    Thank you for posting this. I’ve been thinking about a lot of these same things recently and I appreciate your ability to put them into words. I especially loved the reminder to be honest when having to cancel something, as it is definitely true I am more disappointed than the other person.

  18. adrienne

    Great list! To add to #4. If I need to leave your event early, I am probably not feeling well so please don’t take it personally. sometimes I arrive feeling fine but begin to feel poorly after a period of time and have to go home. Know that I want to stay and have fun but I can’t.

  19. FibroDAZE

    Excellent list. I have fibromyalgia and other chronic illnesses and this definitely applies to all those w/ chronic illness. I will be sharing!~ Kathy

  20. Polly Gallo

    I agree, agree, agree! The only thing I could add is “Keep a sense of humor as best as you can,” which goes with keeping a positive outlook as much as possible. Pain is tiring and because of that I sleep a lot. It’s one of the things I hate the most about my condition. Because I know people DO look at me as though I’m lazy. That saying “let the little things go, and everything is a little thing” is easy to say (and true to an extent) but when you have a health problem, and feel like life is passing you by, it’s hard not to feel like everything is a big thing. (Those are my low days talking) But without my children and a sense of humor I know I would be dead already. If I didn’t laugh I’d cry. And I would much rather laugh.

    Thanks SO much for the post! Your not alone out there! And I’ll try to remind myself the same thing. Earthmuffin33 with Love.

  21. Post
    RA Guy

    Polly, a sense of humor is indeed essential. Quite often if feels like my only options are to laugh or to cry. I do cry a lot…but I always try to laugh even more. I make it a point to share this humorous spin as much as possible here on my blog.

  22. Diana

    Right on the mark! Thank you for sharing this list. I have several things going on with me, but my fibro and arthritis really fit right in with what you’ve said here. Saw your link via @invisibleillwk on Twitter. Blessings to you.

  23. GinaRClark

    All true. For me, it’s relearning all of these things all the time. “There is no “there” there” as Gertrude Stein so famously declared. She talked about a place, I’m referring to an overall state of being. I have never arrived at a place of understanding and awareness that I could sit with forever. So I get to go deeper in to each of these points depending on my emotional state, pain levels, financial situation, the demands being placed on my time, and yes, even the weather. As always, I appreciate you sharing your good AND bad days. It makes the rest of us in the Rheum community feel like we’re not the only ones.

  24. Wayney

    “I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.”
    This is so very true. This whole list is awesome!

  25. Danielle Tipton

    I also love & appreciate this post, as well as your blog. As the mom to two unique kids with JA, I gain a better understanding by reading what their fellow sufferers write. If I can’t cure it, I can at least arm myself with as much info as I can. Thank you so much for sharing.

  26. Heidi

    Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness.

    So true! I don’t have chronic pain, but I’m an addict and I have chronic issues from living with my addiction. It’s kind of surprising to me how much I identify with this list. Is that unusual?

    Great work. Keep it up!

  27. Tami

    True statements! I have had arthritis since I was 17. I am 36 now, a single mom with 2 wonderful daughters aged 5 and 9. I have had to deal with many people being disrespectful to my family, and I have had to deal with others telling me how to live MY life.


  28. IDALY

    Thank you for all your posts. It really helps alot, I always feel like no one understands me at all. It feels great to know that there is people that actually knows how it feels and help others think the same way.

  29. Fi'Ra' Fighter Gal

    I love you too, RA Guy….you help so many people try to understand what RA is & what we go through on a daily basis. Trying to explain the fatigue is the worse, I find. Other people just think that you are being lazy and that is the worst part of it for me. I am not lazy… just really tired…especially just before my Enbrel is due and right after. Thanks for diminishing the stigma RA…I really hope others will use their compassion to be able to empathize/sympathize more with the condition of RA & those of us trying to cope with it.

  30. Denise

    I just found this site an am I happy I did. Ten Things I’ve Learned Article was right on.

    Thank you for taking the time.

  31. Trish

    Hello! From reading “all” of your comments and posts, I feel I found a new family who knows me by name, Trish and by my disease. I glad to have found this wonderful site. This site truly relates to what I’m going through. I was astonished by my dx of MCTD and RA as I have always been “too” active, to the point of being “hyper”. Funny thing, being “hyper” allowed me to get a lot done over the years. I know I’ve had this MCTD and the “wonderful RA” for about 3-4 years, but I am a type A who just pushes and pushes to get my “chores done”. I’d see my PCP on a regular basis and regularly I would blame my Thyroid was acting up; ie; I have no energy, my hair is really falling out, etc.,

    I’ve worked at UPS part-time for the last 15 1/2 years and my dx was in January 2012 and they had me off on short term disability. Well, with the MCTD I had torn two tendons clean off the elbow bone on my right dominant hand. When it was time to go back to work, I was no longer capable of doing anything repetitive, no lifting anything 5 lbs below the shoulder and 10 lbs above the shoulder. Working with UPS, you must have the ability to “assist moving 70 lbs. Guess what, I lost my job in August 2011, basically one day after receiving my “you may return to work slip”.

    I stay at home and think back to when I had energy. I’ve gone through a couple of bad flares, one right after my elbow surgery. The other, was mild and I feel like I’m still going through it? Do flares come in different “mild, moderate, I’m going to die” types?

    About 15 years ago, I was a cancer survivor, the next decade 1/2, I have to put up with this (*imagine very, very bad words here) *stuff. I think at times in the quiets’ of moments that God gave this to me and I agreed to it, but I don’t remember agreeing on going on worthless medications that they put you on. Oh, I gained 70 lbs in 7 months. I went from 132 to…well, you can count. Body feels wasted, I’m so puffy, I think if I wasn’t so heavy, I swear I’d fly straight to heaven and tell God just what I think of him and letting me “take this on”. Oh, for me, prednisone and eating and eating is just a myth to me, I’ve lost all appetite, but still gained the weight. I have to “remember” to eat (7:30pm)…and it’s just silly that I can’t lose a pound.

    Family…just doesn’t get it. My husband (high school sweetheart) patted my shoulder one night and said “I feel bad you have to go through this”. That’s it! Nothing else. No back rubs, no nothing, nada. My kids look at me, like what’s wrong with you? I’ve done my best to tell them, but they are in denial or just being 16 and 18 years old. Not sure what to say about the hubby and if he’s in denial or if he touches me, he’ll get it??

    That’s my happy story and I’m sorry I had to tell such an uplifting story on the people that seem to know me best. Please accept my apologies in advance.

  32. Cynthia

    Simply put I want to say THANK YOU RA Guy!!! You and all everyone who has taken the time to share throughout are helping ppl like myself who are newly diagnosed with RA (and other diseases) Shorten the Learning Curve by years!! Thank you so very much for giving back by giving so much of yourself.

  33. Hillary

    Well put. The changes in my mood are as sudden as the changes in my pain levels. I’m still trying to figure out how to handle that. Because it must look very strange and scary to others around me. Yet I have little control.
    It was one reason (of many) I got divorced. He didn’t like my ever changing moods.
    I try to distance myself from others when I know I’m down, but my boyfriend challenges me by saying, “when you are down, that’s when you need me the most.” He’s right.
    I just hate that I cannot control my moods better.

  34. Jo Lee

    Thank you for this! I shared with friends on my FB wall. I may have to print -with proper credit of course- and post this on my mirror as a daily reminder. You’ve validated everything about me – how I feel, what I do (and don’t do) and the constant roller coaster of the highs of hope to depths of despair that seem to fill my life when I’m not paying attention.
    All the best to you!

  35. Ricki

    I love this. Oh so true! I was born with liver disease and have now had two transplants… I am able to do more, but still not “cured” #3 is so important to me… I just wish that others understood that even though they see me doing things that I enjoy does not mean that I am better and also doesn’t mean that I will feel good enough to do the same the next day.

  36. Sarah

    As someone who suffers from a chronic illness, I know that keeping a positive state of mind is important. Unfortunately I suffer from depression as well, which makes my physical symptoms worse.

  37. kerry keys

    Hey RA Guy. This is one of my favourite coping mechanisms when having a flare. The only thing that it doesn’t cover is how to deal with friends and family who are always very keen to share advice on diet and lifestyle options. That’s what I struggle with most. Everyone has a new diet that they want to share with me that they believe will ‘cure’ me from RA. Humph!

  38. Laura S.

    I am trying to explain how I feel daily! I found it!! Let’s all stick together. Become a LARGE team to support all the people across the country with this illness!! I have Fibromyalgia/CF Syndrome, etc. We will ALL get to a point where this excruciating pain doesn’t consume so much of our lives!!..I’m here for anyone that needs a supporter or an ear to vent to or laugh with!

  39. Cheryl Shergold

    All of it is true for me,I have to force myself to do things or I will concentrate on my pain too much

  40. Katie H

    My mother sent me this, and I must say, it really hit home. I need to tape #7 around my house, just as a reminder it’s no-ones fault. I am 31 years old and have lived with, some days barely though, R.A. since right before my 25th birthday.

    Thank you, and I’ll stay tuned.

  41. Abigail

    Thank you for sharing this information. RA is my second autoimmune disorder discovered March 2012. First one was 2009. I have had to quit my career, take care of my disabled family and temporary leave my doctorate program all in the last few months. I am finally ajusting to it all, but the 10 rules helped greatly!

  42. Shirley

    Thanks so much, I’m going to share on facebook. I have ankylosing spondylitis rather than RA, but it all resonated with me too. I especially like point 6 – I don’t know how many times I’ve thought I;d come to terms with this horrible disease and then something else happens or somewhere else flares up and I have to come to terms with that too.

  43. paula

    I have Lupus, and sometimes i can’t use my Hands and yes it makes me tired alot. I had to move into an apartment last year, no more out side in the sun or heat, But I know how I feel and this stupid illness will not get me down, some days are better then the rest, I do Lay down when i need to I don’t care what people say about it, My work will be there when i get up.I do have a Wonderful family who excepts me when I feel bad or Good. I was a Waitress for 30 years and I loved My Job and was one of the Best, But now I am on Total SSD. I am glad that My Aunt referred me to your site, Thank you, I have found that when you feel bad then take the time you need to feel better, It is all about me now and I thank God that I do Have a Husband and Kids that Love me enough to let me be me.

  44. April

    I read this list over & over, most often when I am having rough days with my RA & AS. Every point is very true and a great reminder to stop allowing others’ opinions or views to hurt my feelings. I am NOT lazy when I am fatigued. I am NOT on vacation all the time because I cannot work regular hours. I CAN exercise intensely somedays & barely at all others, but I force myself through the pain regardless and no longer will let myself feel guilty over it! I am slowly letting go of those in my life who continually judge or choose not to understand my life now with my health issues, I do not need them nor their pitty or negative comments. Thank You RA Guy for posting this, I surely needed to read it again today!

  45. Karen

    Bravo! I’ve had RA since age 6, and every one of your points is absolutely true. Sometimes the disease has stopped me cold for awhile, but most of the time I have done what no one else thought I could or should do, including my mother when I was young. But…as you said, “It is my life…” If I love doing it – what daily “triumphs” are mine. Thanks for reminding me I am “not alone” in my understanding of what it takes to make this journey with pain as my partner.

  46. Kim

    Bravo, I have spinal stenosis, as well as degenerative disc disease, and I use a cane on occasion, because I have trouble walking. We posted this on our FB page, thank you so much, you rock!

  47. Jean Allyson Phillips Currier

    This is an excellent article for anyone who sffers from chronic illness. M fvorite one is never take out your pain on others. These 10 lessons can be learned regardless of your chronic illness. Jean Phillips Currier

  48. Marg Harris

    I was diagnosed with RA in 1995, and also undiagnosed Graves disease! Had pain, swelling, weightloss, tremors, etc…..finally several months later Thyroid disease was diagnosed. I was convinced I had Parkinson’s! Scarey time!!

  49. Chris S.

    Loved this list. Thanks for posting it. Makes me feel like I’m not alone in this fight against RA.

  50. Amira

    I must follow your advise. And will give a copy to my husband to read also……………

    Thank you.

  51. Linda

    I have had Scleroderma for four years and I still am fighting with the changes I had to make. Each day is different and some are good and some are days I want to get back under the covers and not come out until I feel better. People look at me and think everything is okay, but it isn’t. Keep posting steps. It has really helped me to accept this terrible disease……. Thank You

  52. Debra Adams

    Perfectly stated! I just started this journey. Diagnosed RA a month ago. Diagnosed lupus 2 months ago. Day 13 of meds. Daily struggle. Keeping hope by connecting with others.

  53. Elle

    Hi, I really appreciated the time and effort you put into this post. So, right on. I’ve had RA now for almost 15 years. I went vegan two years ago hoping it would cure me. Now I follow the Engine2 food program after seeing the Forks Over Knives DVD about three months ago. RA is one hard disease to get rid of. I had to regroup in my mind and now I say to myself I’m protecting my heart. I definitely have more energy since I went vegan. I really can identify with all your points. I had to increase my Methotrexate last week to 7 pills a week instead of five pills a week. I felt defeated and then I moved on. I move on a lot! LOL, Elle

  54. Anita

    Thank you for the encouragement. Living in a third world country with a rare condition (CRPS) has been frustrating. Unqualified doctors and corruption has left me feeling extremely isolated and frustrated. I am so dependent on information from overseas websites to help me understand my condition. The Neurologist that I was assigned to told me that it was not his job to explain this condition to me – it was my responsibility to find out. I do not have med aid and because this is an IOD case I have to use their doctors. I am in a stale mate situation! There is no support here in South Africa. And people really don’t understand why I just can’t walk through this pain and get better. Thank you again for sharing.

  55. GLORIA

    And sometimes when you are alone, just scream, swear or even cry. Just let some of the anger that we all feel because of this pain. I had to yesterday. I feel better today. <3

  56. Rebecca

    I have chronic pain as a result of accidents. Although my pain is not auto-immune related, I can understand all the things that you are saying. The thing that resonated with me the most is that our bodies need to rest. And I admit, when I do take a rest, I feel lazy. I need to stop thinking that way. I start work at 6:30am, and sometimes with all my chores and responsibilities, I am not done with my to do list until 8 or 9pm. If I ever am done early, I feel guilty for just laying down, or sitting on the couch to read a book. My body aches, all the time. (back and hip problems). I am not as bad off as many of you, I am still able to function. But it is draining. And many others don’t understand.

  57. Kara, Denver, co

    I appreciate the part about not comparing pain with others. I don’t like when people say, “I would trade places with you any day.”, etc. I actually now feel more empathetic and sorry for someone with a paper cut. Pain is pain. My pain doesn’t make someone’s paper cut hurt any less.” Neither does someone in more pain and more problems than me make my pain and hurt any less.” This has taught me, we need each others empathy, build up one another, cry with one another, cheer for one another.

    If someone is in more pain than me, those judgmental statements others say or I tell myself, my pain doesn’t count then and keep it to myself are not healthy. It’s the judgmental parent voice that tell us our pain doesn’t count or isn’t that bad. So lets not listen to judgmental statements of others or from ourselves. I heard something interesting lately, more people bow out of the Olympics from blisters than from breaks and bigger injuries. So lets not make less of anyone’s pain and be empathetic for hurt and pain for what it is, it brings more healing that way.

  58. Denise

    Kara in Denver – All, I can say is, ” Bravo! Perfectly stated ”

    RA Guy, Thank you so much for publishing this site! You’re an inspiration in a sea of people who misunderstand the whole RA journey.
    I used to say RA Mess, but, being negative gets me nowhere, so heck with it. I was diagnosed with RA in May of 2011. My first reaction was extreme relief, just to know WHAT this was. That’s been followed by days and days of reading about treatment options. Unfortunately, my options are limited. I also have Scleroderma, so many of the popular RA meds are unavailable to me. Apparently, what may calm one disease, will enrage the other…Oh Joy..
    So, as this journey of challenges continues, I just want to say, ” Thank You “…your writings help more than you could ever know 🙂

  59. Dorie T

    Thank you SO much for this! It has really made my day…week…my month even! Thanks so much for being brave and telling the world how RA really is. Keep this up because you are touching so many lives of the afflicted and their families. I read this to my husband and i have been working on many of these points for along time now. I think its also very important to take every day separately & take it all in as it comes. Thanks so much RA guy 🙂

  60. Linda

    I am printing the RA Guy 1 to 10 and sticking it to my fridge!!! When I am bad tempered and trying to reason with my teenage children to help with some chores, they might take a look at the fridge and think again ! And not think I am just being lazy! Hopefully friends and family may have a read too as I am not one to complain and discuss my illness on a regular basis (if at all.) I think sometimes they just forget and think that I don’t have a chronic illness, it’s must be just pure fabrication on my part!!! Thanks RA Guy!! I relate to all of 1 to 10!!

  61. Jackie

    Hi. I’m a 47 yr old single mom of a college freshman.(proud momma!) I was recently diagnosed with Osteoarthritis. It is the worse in my lower back(L5-S1). I’ve had 3 injections in my back-with minimal relief. I am an LPN in a nursing home. I was off 3 months due to my back. (2 bulging discs, one herniated, and pinched sciatic nerve) I just tried to go back,and the pain was unbearable. I ended up in bed for 3 days after my first day back. My neurosurgeon states the only thing left he can do for me is surgey-which entails breaking up the arthritic bones, and inserting a steel rod. I’m going to lose my job-I KNOW it. Do I try another job? If I lose my insurance, I can’t get the surgery! Do I apply for SS? or disability? I am so at a loss as what to do. I am on the verge of losing everything.Any input is greatly appreciated.
    Thank you for listening. Jackie

  62. Sandra Emilianowicz

    Thanks for making me laugh, even though I’m currently in pain. I agree that we have the final say regarding treatment options. My DR has stopped trying to push a drug I have already said no way to. I do know my body, I’m not new to RA. If it’s not broken don’t fix it. God Bless us all.

  63. Jennifer N

    you should add one more… Do not do things for me. I will ask you for help when I need it. Do not assume that I need help because of my disability, I am just as capable as you are for doing things for myself, it just may take me a bit longer, and it is my journey to take, not yours. Do not take offense at this, I just need to know that I can do it for myself and that I do not have to “give up” and rely on someone else, for if I do then I am truly lost.

    and another one. Everyday is a fight for me, I fight to walk, I fight to do my job, I fight the pain that is racking my body on a daily and sometimes hourly basis. If I am short at you, do not take it personally, you might be witnessing my current “fight” to get myself together enough to do what I need to do. I have nothing against you, and my frustration is only internal, just give me a few minutes then come to me with whatever you need of me and I will do my best to do it with a smile and appreciation that you are letting me do it.

  64. Katie

    Just wanted to say thank you. Whilst going through an unexpected flare up and a particularly “down” time, took the time to read this and realise it isn’t all that bad. Thank you for your inspiration

  65. Jody

    GREAT list! Too bad you most likely learned them the hard way. It took me awhile to realize that I was the one in control as far as Drs. are concerned. Afterall, I’ve been the one in this body with the RA for most of my life, not them. The feeling lazy one is a tough one – people – even good friends who have known me for a grillion years – still sometimes suggest that I’m just a slug – even though I know they know better. And denial…whoo boy….I’m da Queen of DeNial ;o)

  66. Melissa

    I have had JRA for 25 years. This is excellent. Thank you so much for sharing. I am going to print these off for myself to look at every day.
    Keep well. Melissa

  67. kathleen heeley

    big thankyou for posting all this, i myeslf have been fighting RA for 10 yrs, with tablets after tablets and test after test, and still the consultants dont know wat to give me for the best, as all meds fight against me wat with low white blood cells and stuff,so they keep taking them off me ,,leaving me desperatly in agony, and feeling very very alone, even tho i have family with me, so i will read this everytime i feel low, which is more times then not

  68. Sue

    My father has had RA for 40 years. He has just discovered that going Vegan is the best thing for him. His pain has been reduced by about 70%. He discovered it was dairy when he had 1/2 a block of cheese and almost died of pain the next day. For those of you who have RA, consider a vegan diet!

  69. Jenn

    Very true and very good article. Now, how do we change employer’s prospective on dealing with people like us. I have had many many ones that do not then judge me with that state of mind. Anyone have any thoughts?

  70. Reema Raykar

    Very true. I can relate to all the points mentioned in the article. I have been fighting RA for the past 20 years. I was diagnosed with RA at the age of 5. Too young to even spell and pronounce the name ‘Rheumatoid Arthritis’. I had a tough time growing up, but over the years though RA was quite troublesome and depressing, it has taught me many things. It has taught me how to cope with the pain, how to control one’s emotions, how to smile when everything with me was going wrong.

    RA has affected my kidneys as well from the past 6-7 years. Things were worst few years ago. But as the years passed, I have learnt how to train my mind to realise how strong it(mind) is compared to RA. Medications may at times not work out, but I can say from my experience that one’s ATTITUDE towards RA has bigger role to play compared to the medication the person is on. Yes, you need to gulp those tablets everyday but a positive attitude towards RA is a must.

    I always keep on saying one thing to myself ” RA will take its own route, but you don’t forget to take your route. Get up, Put a Smile on your face, have a positive frame of mind and achieve your goal.” 🙂

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