Chronic Unsolicited Advice vs Reality of Living With Arthritis

May 5, 2018

 

When you fall ill you may notice that it seems like everyone has a recommendation for you. Not just for cures or treatments but for your life as well. Often they come from people who don't have any clue what living with arthritis is like or sometimes their arthritis isn't as bad as yours but they still think they are an expert on it. While they may seem like they want to help but instead of thinking of what you should do, they should be thinking how they can help you and maybe that you've been sick for awhile, kind of obvious these have already gone through our heads and scenarios. It's incredibly frustrating for us who have been sick for a long time or the wave that comes when we first fall sick trying to weed out what we really need to do and not. 

 

Please think before you suggest it, you may be doing more harm than good. When you recommend the following to someone living with a severe disability, this is what it might actually says to them. Also think about how long we have been sick, how many hours and hours of research we have done on our own or hours we've spent with real medical professionals. If someone really wants to help out a chronically ill single mother they could, I dunno, help me clean my house or make me some food. Don't put more stress on my plate. 

 

 Get a job.

 

If it were that easy I would not be on long term disability, maybe long term disability wouldn't exist then. Telling me to get a job, after having to give up mine which I loved only reminds me of that I can't work do anymore, adds stress onto my already stressful life because I am struggling with my health. Suggesting job after job, where I have to explain I can't sit, stand or do much of anything for long periods of a time is only reminding me to focus on the negative and the pain rather than the positive, what I can do. I may need time to adjust to the disease and it's toll on my body and mind also to find the right treatment plan, if I can find one. It is a reminder to us, not a suggestion. If we're sick, we're sick. A job isn't going to solve our true problems, in fact it might only exasperate them or create more. 

 

How would you like me to tell you to life your life? Here's an idea, donate to arthritis charities instead of being selfish or think outside of the donation box of the same causes over and over. That would really help me and just about everyone else with arthritis of some kind. 

 

You should try *insert something they read off an article or heard through the grapevine*

 No... Just don't... Do you also believe the earth is flat and windex is going to cure me?

 

A lot of the time, when someone, myself included, falls chronically ill they end up spending thousands of dollars on useless cure or fix its or anything for some relief because this crap hurts and coffee won't even touch the fatigue some days. Well a lot of time the "cures" you are reading about just don't work but people are very gullible and desperate when it comes to their health. I wonder more about the placebo effect more than anything on some of the things I hear when suddenly someone is better from RA after drinking 13 liters/gallons of windex. 

 

Treatments Way Above What We Can Afford or Way Out of Reality

 

Honestly if you're going to keep bugging us if we tried your idea that will help us for whatever, you pay for it. Disability doesn't pay much. And no, putting crystals in my house isn't going to ease my pain or cure my aura. 

 

Now being a blogger for arthritis I try to keep up to date with the treatments that are suggested. I also work alongside the trusted health websites and arthritis charities... If it works, I feel like I would know about it by now or even afford it. 

 

The woman sitting beside me on my flight out to Chicago and I got into an argument even before the flight took off from the ground.

 

We got to talking about what we both were going to Chicago for. Like always, someone feels they have to pipe into my life and give me unrealistic advice for a chronically ill single mother living on disability but this one was special. This was of course after she bragged about her awesome husband, million dollar mortgage and great whatever career she does to make her feel important in the world, she was off on a girls only weekend. I could barely get any words in. 

 

 She was persistent I fly to the Czech Republic and get radium therapy from some caves or whatever, or drive to Montana and get it done unregulated. She kept going on about it being covered by German medical as well... All I could think about was how the Germans once tried to eradicate disabled people about 100 years ago. And how am I supposed to get their coverage? 

 

She does it for her osteoarthritis and crohns, she doesn't need meds anymore but tired everything. Tons of people with arthritis go there and no longer have pain. I need to do it for my Rheumatoid Arthritis. Whats's up with the competition for who's the sickest but strongest with some people?

 

Everyone gets arthritis.... Including total whack jobs

 

 

 

So when I told her there was no way a disabled single mom could I afford such a thing,she called me a sob story. She insulted my patient advocacy because she lived in the middle east some 15 years ago and there are worse off people than those dealing with the Canadian medical system. If I tried to say anything she had to talk over me. I ended up almost in tears telling this lady to stop going on about her awesome life and this totally out of the question treatment and belittling my purpose. She felt victimized by me telling her to shut it. The rest of the 4 hour flight I had to pretend to be nice so I wouldn't get kicked off by the air marshal.

 

 

This was of course while I was on a plane going to Chicago after being selected out of nearly 400 applications to attend a conference on patient advocacy. I kind of feel like I wouldn't have been invited to that if I wasn't totally on to something in the first place...

 

 

 

 

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