I saw an article posted on an RA discussion board recently. The headline read, “Acceptance of Chronic Illness Helps People Move On: Hoping for recovery may actually prevent happiness, researchers say.” The article went on to explain that there is a “dark side” to hope, since it sometimes keeps people from getting on with their lives and making the best of their situations.
This leads me to a question I have often pondered: What is the difference between acceptance and giving up? People use words like “fight” and “battle” to describe illness – as in “So-and-so passed away after bravely battling cancer for years.” As seen in the example I just gave, “battling” is no guarantee of winning. Yet society seems to expect it of sick people. It’s seen as “braver” to “battle” a disease rather than accepting it. But with a chronic disease like RA, is this really the right idea?
On the other side of things, dealing with RA is often viewed as a grieving process. Since the disease is progressive, the stages of grief are sometimes visited again and again as we lose abilities. The five stages of grief, as defined by Kubler-Ross, are denial, anger, bargaining, depression, and acceptance. I’ve shuttled back and forth between the first four, never quite reaching the fifth. But the article I just read suggests that acceptance is an important part of being able to move forward. A lot of other people with chronic illnesses agree, and say that their lives are better and happier since they have stopped fighting reality and decided to adapt instead.
Recently, I was talking with a friend about my RA for the first time. She was very understanding, since she had known someone with RA. But when I mentioned that I had a cane now that I rarely use, she exclaimed, “Don’t use it!” Then she explained that using the cane would send a signal to my brain that I needed it and make me dependent on it. She talked some more about the power of the mind and spirit to influence the body, and urged me to fight the disease.
Sometimes I agree with this. This is why I fought so hard when my physical therapist urged me to begin using wrist braces and a cervical collar. (Well, that and my denial.) I also fought the concept of getting a disabled parking permit, which I now use and appreciate. I fought the concept of buying clunky but comfortable (and expensive!) Dansko clogs, which are now the only shoes I can wear without terrible foot pain. Did the shoes create dependence?
My husband would say no, and remind me that I was limping around, unable to walk any sort of distance, until I got those shoes. He reminds me that all of the adaptations I mentioned came about because they were NECESSARY. The cane, too, was necessary when I got it. It isn’t anymore, and it sits in a corner. Doesn’t that prove that I didn’t become dependent on it?
I don’t know where the line is between “battling” the illness and just plain denial. I don’t know where the line is between “acceptance” and giving up. I know that I would like to settle these issues so I can choose a path and commit to it. Right now there’s a certain amount of waffling around and second-guessing that wastes mental energy. I think I am afraid of choosing wrong.
I think that something exists out there that embraces the best of both – accepting the reality of the illness while still hoping and working towards a possible future without it, or at least with a lasting remission. I have no idea how to get to it. I know that it’s not much fun for me, going from denial to anger to bargaining to depression and back again. I’m clear on the fact that it’s not healthy for me to chase pipe-dream “cures”. I know that whenever there’s a med change and I tell myself, “This time it’s really going to work for good,” the disappointment is sharper when it doesn’t. I also know, though, that positive thinking is good.
I have no answers here. I guess I’m just using this space to wrestle with these thoughts.
Tags: Acceptance, Denial, Grief
I have had the Dansko clogs for two years now and LOVE, LOVE, LOVE them. I recently bought another pair of shoes and ended up returning them because I knew that I would only wear the Danskos. To me they are well worth the money. Plus, after two years they still look like when I first bought them.
I wrestle with the same ideas and tend to sway more with your friend but can definitely understand and appreciate that sometimes we need assistance. Mine doesn’t come with gadgets, I think I use my family a lot to help with little things like opening jars and reaching things out of reach. So, I guess I do use more help than I like to think I do. Good luck wrestling this through your mind.
While I have a different illness, I’ve fought with this problem as well. I have Ehlers-Danlos Syndrome, which is technically not progressive but effectively is. My joints get damaged extrordinarily easily. This also can give me some of the relapsing/remitting sorts of effects – I’ll injure something (relapse), work hard to re-strengthen the muscle to make up for the joint not working well and end up in a place of reduced pain again (remission), until the next injury.
For me, at least, coming towards acceptance had several important steps.
The first was just sitting down and rather brutally taking stock. Figuring out what was, what I could realistically expect, and where I thought things would be in one year, five years, ten years. I did a lot of talking to other people who have the same issues I do, to see how they worked around and how they progressed. Like RA, the progression of my illness is unpredictable and varies wildly from person to person, as does response to different drugs to help with it.
Next, I had to just let myself grieve for the dreams that could not be, the hobbies lost, changes of circumstance, and pain that came with my illness. That one took a lot of talking to friends and therapy, and I still bounce back there now and again, when something new happens. I think I spent about a year and a half bouncing between anger, grief, and bargaining, which I suppose I’m collapsing into one category of things I did to get more mentally healthy.
Finally, I had to start making new dreams, new plans, finding new hobbies and adapting old ones, making new friends who ‘got it’, putting together a medical team that really worked for me and listened to MY priorities, that sort of thing. I think that was the hardest part for me, and the most vital. When I could have as emotionally fulfilling a life as I had before I ‘got sick’, it started mattering less what being sick had taken from me.
I’d still jump at a cure if it was possible, mind you! I’d still love to be able to pursue my old dreams. I accept that those things aren’t possible with the state of medicine where it is now, so instead I create new positives to work towards in my life. For me, that’s the balance between positive thinking and acceptance – creating positive dreams, activities, hobbies, connections, and friends that fit within the scope of my life now.
~Kali
http://www.brilliantmindbrokenbody.wordpress.com
I wrestle with the same things. I don’t know. Do we really give up if we accept what RA has done to us? We don’t really have a choice, I suppose. I was thinking about this the other day when I blogged about the ups and downs of RA. http://ohboy-boys.blogspot.com/2009/11/ups-and-downs-about-living-with.html
We get so much advice but nothing can prepare you like experince. I never imagined how bad my RA would get, and it is getting worse, but somewhere in the back of my mind, I want to believe that I can reverse the damage. I guess we the accept the past since we can’t go back, but we still have to look towards the future. I don’t think any of us stop fighting, I think we start knowing what it is we are capable of – I am rambling too. This is my perception of my own acceptance.
Hey,
This topic sounds familiar. 🙂 Remember when we were talking about denial last week? This was a great post. I loved how you laid it out there! I’m still leaning towards “NOT accepting” this yet.
Your post sparked a conversation between my husband and me. And we both agree, we can’t accept anything until we’ve tried EVERYTHING. There are miracles happening every day with this disease. Why shouldn’t I be one of those? You know?
Like my husband says, RA is a hard disease to accept b/c it changes day to day. Right now, I’m not doing as well as I did last year, but I’m doing better than I was when I was on no meds. I also have plenty of friends who are able to work and enjoy their old activities b/c they found the right cocktail for them, but it took some time. Anyway, I know others are far better at accepting things than I, and perhaps that is why they are more content. But I refuse. I have too much life to live still!!!
I think that something exists out there that embraces the best of both – accepting the reality of the illness while still hoping and working towards a possible future without it, or at least with a lasting remission.
I currently find myself at this exact spot, although to be honest I think that a lasting remission might be outside of the realm of reality. But I sit down and remind myself that as long as I continue to accept the current, I can’t really harm myself by setting my sights higher…such as a lasting remission.
This fine line between accepting my illness and feeling like I am “giving up” is one I have walked for years, and I have no doubt that I will walk it for a long time to come. Thank you for sharing your thoughts on this topic, it reminds me that I am not the only one dealing with this aspect of living with RA.
Thank you so much for this post – I often wonder about this very thing. Is it “giving up” or “accepting my limitations” if I know I can only do “one thing” (attend a party, meet friends for dinner, etc) per weekend? Am I limiting what my life could be? If I do “two things” I end up paying for days afterwards. I think the difference between giving up and acceptance has a lot to do with the thinking that goes behind it – if that makes any sense. If we look at it with defeated eyes, it’s giving up – looking at the same thing with “practical, realistic eyes” it’s acceptance.
Thanks again –
Tort
I’m one of those lucky individuals whose RA went into extended remission — in my case, for about ten years. I’d had it for eight years prior to that. And during those eight years I’d given up hope for relief. I’d even stopped, for about the last four of the eight, taking any sort of meds for the disease, since they made absolutely no difference except to play hell with my stomach and make me afraid of other, far worse side effects.
And then, over time, the flares got shorter, less intense, and happened less frequently until they just stopped. I’d like to say I celebrated, but you know, as I got where I could do all the things I’d used to do again, I just accepted the new situation and moved forward. I didn’t like to even think about my RA. I was afraid I’d jinx it. I might, by giving it thought time, trigger it somehow.
That was silly, of course. RA goes into remission when it feels like it and it comes back the same way. For me, it came back four years ago, though it has only gotten more severe over the last year or so. It’s back, but it’s different this time.
First, it’s attacking my hands and wrists more than other joints, and rather than being intermittent (like before), the flare is continuous, like a nagging headache in my hands. Second, because I’ve been through it before, I know what to expect this time. Granted, the anticipation of terrible pain isn’t very pleasant, but at least I can be ready for it. Prepared, if you will. And third, this time there are a lot of other, stronger, and perhaps better medications available than there were when I first got RA. There are more “weapons.”
All of these things make it easier for me to accept both the RA and the limitations it causes this time. I know there will be times when I just can’t do what I want to. And some of things I’ll have to give up permanently as the disease does its damage. And really, there is no other choice. The fact is I have RA. The fact is, at least today, that it’s incurable. The fact is that the meds sometimes work wonderfully, but mostly do not, and all of them have potentially serious side effects. I either work around this disease, doing all that I’m able while allowing for the limitations, or what? Curl up and die? Crawl into my bed and refuse to get up?
Don’t know about the rest of you, but neither of those are options. And so, I just keep on. It’s no fun being morose and crabby all the time, so I smile. It’s not always easy, but it’s worth the effort. I accept that I have RA, that its incurable and that it has and will always have a huge effect on my life. But I haven’t given up hope for a cure, or hoping (even if the chance is infinitesimal) that the disease will go into extended remission a second time. I believe it’s that hope that keeps me moving forward.
I’m rambling too. Thank you so much for writing this post, Remicade Dreamer. It’s quite beautiful and thought provoking.
-Wren
I think you’re absolutely right about embracing the best of both – acceptance and hoping. Surely not to hope at all is truly to give up, but one needs to accept to a certain extent in order to just get on with life. The most difficult thing for me (because thankfully my RA is mild) has been to learn to pace myself. I am still struggling with that one nearly two years after diagnosis.