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.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
“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!
This is wonderful. I posted it on the Facebook page for “How to Be Sick.”
Warmest wishes,
Toni
That’s exactly how I feel….finally someone who understands!
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.
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.
~katie
This is a great list! I can definitely relate! I will be sharing with my twitter followers.
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.
This is such a wonderful post. It covers everything. RA is horrible, but don’t ever give in to it!
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.
Wow, I love this. I have fibromyalgia and a lot of what you said certainly applies to me too.
I love you!
Brilliant, thank you for writing this
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?
1,2, 8, and 9 are my favorites!
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
) (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).
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?
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.
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.
This is wonderful! Thanks for posting this, and please know you’re in my thoughts!!! -Steve
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.
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.
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.
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.
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.
Amen to that! You summed it all up perfectly and this could apply to countless illnesses. I’m printing it out to give me a nudge when I’m feeling sorry for myself.
Thanks, jj
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.
Such a great post mate, and so very true.
Bravo!! *hands clapping!* Thank you for this!!
Excellent list. I have fibromyalgia and other chronic illnesses and this definitely applies to all those w/ chronic illness. I will be sharing!~ Kathy
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.
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.
All I can say is thank you, noone understands and its always just in my head!
AWESOME, I can use this for my own incurable lung and heart disease….well said….
well said! Thanks for a great post. sharing!
Well said! please keep enjoying the things you do
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.
Great post! You’ve managed to put into words what I think most of us with chronic illness have learned. I especially like #1 and 9.
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.
Each point, from one to ten is fantastic. Thank you for this solid read. It not only reaches out, it makes you reach inward.
“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!
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.
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!
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.
(((HUGS)))
Tami
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.
I love 8, 9, and 10! Great job.
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.
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.
Denise
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.
Trish
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.
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.
That is absolutely beautiful. Thank you for taking the time to share it!
Thank you RA Guy! I learn so much from you!
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!
I really liked that it is so true.
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.
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.
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!
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!