Confessions Of An Optimist

Rheumatoid Arthritis Guy is very grateful for all of the messages of support that he continually receives. Yesterday, one of my longtime readers Carla wrote the following comment here on my blog:

sunAs you know, I’ve been following your blog for a while (almost since I was first diagnosed more than 2 years ago). You seem to have made such great progress in your life, and although the disease hasn’t seemed to relent, you’ve seemed to fill your life back up with good things and a great outlook. I’ve been very pleased to watch this transformation.

My email inbox is also full of similar messages. (If I have not responded to your email, please know that I do read each and every email that is sent to me, and eventually I do get around to replying to each one personally.) About a week ago, I received the following message:

sunI just wanted to say thank you for having your website. I have felt sooooooo lonely since I started going through my first RA flare. I have been crying so much because I don’t know how to get anyone to understand this and now I see that I am not alone. There are many others who are my age and younger going through what I’m going through and it helps to know that it’s not just me. So thank you, you’ve helped me find some hope!

I can’t say how much these two messages, and the many other similar ones that I have received over the past year and a half, have helped me. Anyone who lives with an illness like Rheumatoid Arthritis knows why it is called “chronic” – it just never goes away, no matter how much we might want it to.

So I am in no way trying to undermine the importance of the 99% of the messages that I receive that are optimistic and supportive, but I find myself in a situation where I need to respond to the other 1% of the messages that I receive. I try to ignore them and move on, but the truth of the matter is that they do bother me.

What type of messages are these that I receive, you might be asking? They are messages that tell me that I have no idea what it is like to live with “real” pain and “real” rheumatoid arthritis. Some of them even refer to my rheumatoid arthritis as a “claim”. (As if all along I’ve been making this up?) Or even worse yet, the classic “your RA is not as bad as my RA”.

So I have a confession to make. Yes, I really do live with rheumatoid arthritis…and no, I have not always been the optimist that I am at the moment. For all too long, the dark shadow of my chronic illness and pain hung over my head, and pushed me further and further down. I have reached lows in my life that I would never ever want any other person to ever have to experience. I thought that I would never be able to leave this place, no matter how many outpourings of support and helpful hands that were offered by people around me.

But I proved myself wrong. My optimism does not mean that I no longer live with what can be at times unbearable pain…it just means that I have figured out how to get through it. Sometimes getting through it means giving in, being angry, being sad, and wondering what the hell it means to live a life like this, day after day. My secret is that I allow myself to experience these emotions without getting stuck in this place. Even if I don’t know why, I just continue to be positive and try to focus on the good. Trust me, it works.

I once again find myself coming back to one of these dark spots. Just today, my rheumatoid arthritis grabbed on hard…and no matter what I did, I couldn’t shake free from it. I didn’t really get moving until around 5 pm (yes, that’s pm!) in the afternoon. During the afternoon, I didn’t even have the energy to change the music on my iPod. (Luckily, I was listening to music that I hadn’t listened to in a long time.)

Do I love days like today? Honestly, I don’t. But my evening has been okay. I even went to the grocery store a few hours later to do some shopping. And I am grateful that today was a holiday (Day of the Dead), so my obligatory day in bed did not have any effect on my work commitments.

So I’m not always happy, cheerful, and in a good mood. But when I’m not, I constantly try to remind myself what it means to be happy, cheerful, and in a good mood…and this counts for a lot.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

9 Comments
9 comments
  1. Andrew says:

    Thanks for you candor. I can’t imagine anyone questioning the “realness” of your RA! I have read of your ups and downs for a while now. There are always those who want to draw attention to themselves or make their issues bigger than yours. Keep up the good work and a a positive outlook.

  2. Rosie purves says:

    Thankyou for writing this! I’m still in that dark place at the moment trying my best to get on with life with my hubby and two young boys. I’m so fed up of people telling me I do not have arthritis because 25! I some times with RA was called something else because as soon as you mention it everyone says oh I’ve got that or no you haven’t! Thanks RA GUY us RA suffers know what it’s like and it’s good to have you on here xxx

  3. Carla Gordon-Cotter says:

    I am very glad to have found this site! You give me hope that I will one day see the light at the end of the tunnel. I was diagnosed with RA 10 months ago and have not worked for 14 months . From runing a security firm to not being able to get out of bed some days really gets me down. Thanks to you I know im not alone in the ups and downs of RA.
    Your Aussie fan. :)

  4. Carol says:

    I, too, have had problems with people believing I have a “real” disease. I’ve had RA since 1991 and think my deformities speak for themselves, but I have two well meaning friends that want me to go away to “camp” for a week and/or have “energy work” done. Both believe I’ll be “cured”. Even my own mother (91) said that she didn’t think my visit to the hand surgeon this past Monday was necessary. All I could counter with was that I’d like to have surgery before the fraying tendon ruptures to keep my fingers working even though the mobility in my wrist has been gone for some time. While 99% of my family and friends are supportive, caring and compassionate, I’m at a total loss as how to respond to the handful that question the disease.

  5. Lisa H says:

    Wow. Just wow. I’ve been heading towards the dark side of my emotions with the RA myself lately and had a bad day yesterday, too. I’m sorry that you get those messages about “the real RA”; I get some of that in real life, too. :( Take care of yourself & know that we out here in blogland adore you and hope you feel better soon.

  6. Wren says:

    I found your blog not long after I came out of a long remission from RA and found myself facing the pain and disability of the disease all over again. While I was outwardly calm about it, inside I was terrified. How would I deal with it? How could I bear it? I decided that this time around, I’d arm myself with knowledge. When I was first diagnosed with RA, I was overseas and had almost no access to information about RA. There was no Internet, no Google. This time… well.

    Yours was the first RA blog I found, via Google. And RA Guy, let me tell you: Your writing here about your experiences, your bravery in exploring your feelings about RA, your gentle humor and encouragement really made a huge difference in how I’ve dealt with the return of my dragon and its influence on my life. Instead of being resigned, you encouraged action and positive thought. I cannot tell you how much you’ve helped me and so many others through this blog. It remains my first go-to each day.

    Finally, you’ve widened my world incredibly. I always felt completely alone as I lived with RA. No one I knew or had ever known had this disease or knew how it felt and how devastating it can be, how life-sucking and dreary. But you, with this blog, allowed me to meet many, many others who share the ups and downs, the daily grind of living with RA. I’m so grateful for that. You inspired me to start writing my own blog–to stop being so alone and isolated with this disease that few understand.

    I’m very proud of you and the way you’ve transformed your daily life, working and interacting and living well even though you hurt and must frequently rely on mobility aids and the help of loving others. You continue to give me hope and courage, and you always make me smile.

    Thanks, Guy.

  7. Cathy says:

    I don’t think it matters if it is rheumatoid arthritis or something else, some people just like to think that they are worse off than everyone else and rather than finding the challenge of their situation, they get angry with others. I am so sorry it was you they took their frustration out on. I guess when you are able to find the positive in the worst of situations that you are never as bad off as someone else. So, in that sense, your RA is not as bad as the 1% that emails you because along with RA, they have to live with constant negative thoughts.

    For me, I am glad that I have your blog to come to for inspiration. Your friendship is something that I treasure and I know when I need someone to listen, you understand. Thanks for being who you are!

  8. Giovanna says:

    First off, anyone who has the audacity to email someone else and tell them they don’t have RA as bad as they do is an egomaniac and an attention hog! Some people are so rude, but without them in the world; we wouldn’t know who the truly genuine and kind people are! Ignoring people like that, I find, is the best. Let them live in their own pathetic angry little world. When people are angry and have a chronic illness, all it does is make it worse; emotional, physically and mentally.

    Now, as for you and your optimism, I think you are doing great! I used to be a VERY pessimistic person until I married my husband, who is the poster child for positiveness and optimism! When he got diagnosed with brain cancer, I HAD to train myself to become more positive and optimistic, for him, myself and my three small children.
    All of us experience the same kind of pain, whether we have RA or some other type of autoimmune disease, we are all in this together and being positive for others can actually help us in the long run. I truly believe in attitude being a predecessor for longevity. My husband was suppose to be dead 2 and 1/2 years ago but he is still here, partly because of attitude during and after treatment and because God was not ready for him to leave us. I am glad that you continue with your blog (whether you are having a good day or a bad day) and all that you say and do to encourage others with our disease.
    Sorry you are having a hard time right now but keep on keeping on and know that we are here right with you cheering you on, even if if hurts to clap our hands ; )

  9. candi says:

    It is so strange that there are people out there who would accuse anyone of such things. It isn’t like you are asking them for money. You are writing something, to help others (and for your own benefit I imagine) and if they do not want to read it, then they shouldn’t go onto your page. I am just blown away by the rudeness of some people. I have had people doubt me and the extent of my pain but I know I am not imagining it so that is all that matters.

    I have been meaning for a long time to write on here but time gets away from me. You are a strong person for writing what you do and we all have our ups and downs, but as you’ve said, remaining positive is the best outlook. Some days I just stay in bed all day and it is because I need it, I need to rest.
    Listening to your body and not to anyone else is one of the important things I have learnt with my RA.

    Thank you for posting this so we can see the full extent of what other people are thinking. I hope you do not take the bad e-mails to heart.

    You have helped so many people with your strength and insight into your dealings with an unforgiving and downright mean illness and you inspire me with every post to keep my chin up and keep forging ahead. As you said, the more you sleep, the worse you feel, you just have to keep moving and deal with everything as it comes.

    Candi
    Aussie RA- 11 years

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