The aloneness of suffering from Rheumatoid Arthritis – or any chronic illness

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Healthy people cannot understand what it is like to be sick. They might think they can, they might understand parts of the situation, they might even pat themselves on the back and tell themselves what good friends they are…but they can’t understand the full picture. Not ever.

In fact healthy people continually say stupid, insensitive things to me. I let it bounce off, because I know that, generally speaking, the person who said the stupid insensitive thing didn’t mean it. They said it because they don’t understand what it’s like to be sick. What it’s like to be in constant pain. They said it because they are annoyed. They said it because they take for granted the simple choices they make every day. Choices I no longer have.

Explaining it to them is too hard. It takes too much energy. And very few people will understand, even after I have tried. I have gone through many friends over the last 4 years. To start with people try to be sympathetic. Then they get frustrated. “Do you *still* have rheumatoid arthritis?” they will ask. “Yes, that’s the thing about an incurable illness…THERE IS NO CURE! I will ALWAYS have rheumatoid arthritis”.

Then they start to get fed up with me when I cancel plans at the last minute. It’s an absolute disaster for them if I can’t make that shopping trip because my knees are so inflamed I can’t walk more than a few metres. It absolutely ruins their lunch plans, and plus they’ll be bored now! And who’s opinion will they get on that cute little dress they want to buy? Very selfish of me.

Or when I can’t make it to a party, or dinner party…or anything really. I try to give people notice. I try to make the call early enough so that they have warning. Generally they say ‘You might feel better later, you can still come.’  Then if I still don’t come I am somehow doubley bad.  They take the fact that I am not well as a personal slight.

Or they say “You don’t have to DO anything. Just sit there and relax! It’ll make you feel better!”.

It will NOT make me feel better. When I am in pain, I want to be alone. Period. When you have a migraine, do you want to go to a dinner party? Do you? Does it make you feel BETTER?

NO, ofcourse not. You feel miserable, and now you have to pretend that you’re having a good time, when really you just want to cry. So when people say “you’ll feel better” they don’t mean YOU’LL feel better. They mean THEY’LL feel better. Because it’s really all about them, and rheumatoid arthritis is soooooooooo inconvenient.

Can’t I just take a pill? Well, sure! I do take pills. Lots and lots of pills. Not just an advil, but pretty serious ones like methotrexate and other immunosuppressives.  I also take 1.5 times the maximum daily dose of Naprosyn.  Otherwise I don’t move at all. The medications certainly do help…but they don’t take all the symptoms away. They don’t take all the pain away. They don’t give me anywhere near a normal life. I am only hoping that they are keeping the joint damage at bay.  Don’t even get me started on the side effects…

People don’t understand that I am in pain all the time. It never goes away, it never lets up. Sometimes it is mild, sometimes it is excruciating. And here’s the really fun thing….I can’t tell when it’s going to be bad and when it’s going to be manageable. Note how I didn’t say ‘good’. It is NEVER good!

It’s rare that I show the pain.  If the pain is showing, you can bet its a very bad day.  If you haven’t read this post on the pain of rheumatoid arthritis, take a look.  Should I show it more?  Should I complain  more?  What would be the point?  Without blood or a sling or something visible, people just don’t believe me.  So I just prefer to be alone and deal with it as best I can.

I can’t plan ahead. I can’t guarantee that I will be able to attend any social function. And if you think that sux, think about what that’s done to me on a professional level. My nice $85,000 a year career is long gone. Not only can I not do full time hours anymore, I never know what hours I can do. So I freelance, because I have to. I work when I can. When I can’t, life is miserable.

When I can’t work, there is no money.

So while relationships with friends are difficult, more importantly I no longer have a financial future either. There will be no happy retirement – I am only 40 – but I live hand to mouth. I can’t put money away. There just isn’t any. Rheumatoid Arthritis treament incurs a wide variety of bills…doctors, specialists, medications, scans, alternative treatments….the list is endless.   I don’t qualify for any government assistance, so I struggle. I am lucky that my husband earns enough to keep food on the table and a roof over our heads. But my kids miss out…yes they do. And that is because of me. It is not my fault, but it is because of me.

And my husband? Does he resent the change in our status? You betcha. And who could blame him? If he stays with me, his future is a lot less bright. And there’s the constant spectre that I might get worse, not better. It’s been nearly four years of steady decline. I still have medication options to try, but I have to be realistic. Most people who are going to respond, would have done so by now. It’s not looking that good.

So let’s see, constant pain and fatigue, no idea when flares will hit. Pain every day, flare or no flare. No way to plan. No financial future. No meaningful career.  Marital problems, family issues…Sounding good so far?

Ooooops! Sorry, I forgot. You’re upset that your hairdresser didn’t do your foils properly and your hair doesn’t look the way you want it to for the big party tonight. That’s so much worse. My mistake…

6 COMMENTS

  1. You hit the nail on the head! Love it…no wait, I don’t. I live everyday with the same stuff. Sadly you left out how rude people can be by commenting on your appearance. It’s either, well you LOOK good – which is their way of saying, you don’t look like your sick. There’s also the one where if you tried to do a little something different with your hair – if they only knew I haven’t been trying to grow it out into the long straight look, but when I can’t get my arms up to use a curling iron or blow dryer this is what it has to be. Or when you are able to go anywhere I have to wear crocs or tennis shoes, elastic waist band or sweat pants, t- or sweat shirts. No longer can my fingers grasp the zipper pull or do those cute little buttons…It’s not fair to say I have let myself go, but more that this is where RA has taken me.

    • Excellent points Claudia! How could I have forgotten the condescending ‘but you’re looking so good! . You’ve lost so much weight!’ (Sometimes weight loss is a sign that the disease is winning – but that’s another post!). You can’t win – if you look good, you’re not sick. If you look like crap, you’re lazy and just should get out and exercise more/change your diet/get a nice new hair do.

      I love your quote – “Its not fair to say I have let myself go, but more that this is where RA has taken me.” May I post that on the Arthritic Chick page? I think we could all relate to that.

      Arthritic chick signature

      • Yes, you may. I’m sure we can all relate. My daughter’s wedding is coming up and I am so afraid I’m going to look like the frumpy old bag lady. =/

        • Thanks Claudia. I understand what you mean – but I’m sure you’ll look better than you think you do! I had an occasion I had to go to recently. A friend put me onto Metalicus. (I’m severely fashion-sense deprived). They have a lot of soft, stretchy fabrics that are incredibly comfortable when you’re sore all over, and much more flattering than I expected. Ofcourse they have the tight, need-to-be-a-supermodel stuff too…but take a look at their website. http://www.metalicus.com/ I bought a few of their loose fitting dresses, and it feels like I’m wearing sweats but I look ‘dressed’.

  2. And yet again…another reason to whole heartedly THANK YOU!! I was just thinking about these very things literally right before I logged on and found this blog and you continue to articulate exactly how I feel. I said I would write my experiences with RA down kind of like a journal which I may do in the future but reading your writings gives me such a sense of comfort, just in the fact that someone GETS IT!…and then I feel bad because I Get your pain ( its a vicious cycle, I know) But you are a tremendous help as I do feel alone in this. No one will ever truly understand an/other illness or anything that they haven’t full on experienced them selves and even still then, everyone experiences things completely different so I am grasping early not to expect a non Ra person to Get this and that insensitive things will be said( found that out very early!) You have really said it all in this post so I will digress but I couldn’t let this moment pass without thanking you…once again!! lol

    • Alexis, its people like you that help me too…though I am sorry that you understand, I am thankful that you are out there giving me support. It helps so much. My ramblings have mostly been just to vent…to find so many other people who feel the same way is the saddest blessing…sad how many people are in pain and feeling so alone. A blessing because at least we have eachother. I hope you feel a little less alone now…as I do.

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