I had lunch with my parents today and some cousins who I don't see too often. One of my cousins, just a few years older than me, asked me what happened to my hand, as I was wearing a brace. I gave her the short form, that I have arthritis, actually two types. I have inflammatory arthritis, and that it can be a risk factor for osteoarthritis. She pretty much immediately pooh-poohed my situation, telling me that it's not that bad. She has friends with prostate cancer, thyroid disease, etc.
I didn't really want to get into it too much, but I wish there was a short but not nasty way to explain. Something like:
I have inflammatory arthritis, which is a systemic auto-immune disease. It can do a lot of damage to my joints and to my body, as well as causing pain and fatigue. I take some pretty nasty medications, but I have it fairly well under control right now. It's something that I won't ever recover from, and will likely progress over time. THIS IS FOREVER!!!!
Okay, so I wasn't able to say any of that, other than it's a pretty serious disease, and I'm taking some nasty meds for it. It does bother me though, that people hear arthritis, and just downplay it. Even my mom, who supposedly "just" has osteoarthritis, is suffering. It's not minimal. Her DIP and PIP joints on every finger are now destroyed and immobile. Just arthritis????
People aren't going to "get it" unless they're ill themselves. Perhaps what they need to know is that it hurts you constantly and even though it's tolerable now,you're scared because there's no limit to how badly your immune system can attack you.
I am sorry you had such insensitive people in your life, even if just for a minute. I understand, I have some myself. But we are here for you and BOY do we get it! I am sending you hugs and prayers.
I've learned to leave arthritis out of any casual interaction about my disease. I tell people I have a chronic, degenerative, autoimmune disease. If they demand the name, I say rheumatoid (at least some people know what that is). If they ask "Have you tried...." I say "actually, I take chemo drugs to suppress my immune system. I don't think 'X' is going to cut it. But thank you for caring". I say the above sincerely. Most people just are clueless.
I've found if I start off saying arthritis, instead of describing the disease generically (chronic, degenerative, autoimmune), I get a better response. Either people are so freaked out and disgusted they carefully never bring it up again (which is sometimes a preferable response), or they ask questions cautiously, knowing that they are dealing with something serious.
This pushed my buttons today, because after 1.5 yrs at a very small school, I disclosed to the volunteer coordinator and the front desk person that I had this disease. I wasn't in for 2 weeks because I was having a massive flare and couldn't drive or really walk, my husband was doing the school dropoff and pickup and things like taking in cookies. The volunteer coordinator was all "that sucks, don't worry about volunteering" and the front desk person was all "oh, you poor thing (in a tone like I was dying). Have you tried apple cider vinegar?" and the last nearly put me over the edge.
Boy do I understand you frustration. My friends understand better than my own immediate family. What I tell people is I have RA with psorasis. They understand RA better. I also do not use the word arthritist. I use the phrase imflamtory autoimmune diseae…just the word disease scares them.
Boy do I understand you frustration. My friends understand better than my own immediate family. What I tell people is I have RA with psorasis. They understand RA better. I also do not use the word arthritist. I use the phrase imflamtory autoimmune diseae…just the word disease scares them.
I may need to use this method, rather than saying arthritis. Thanks Marietta.
Marietta said:
I've learned to leave arthritis out of any casual interaction about my disease. I tell people I have a chronic, degenerative, autoimmune disease. If they demand the name, I say rheumatoid (at least some people know what that is). If they ask "Have you tried...." I say "actually, I take chemo drugs to suppress my immune system. I don't think 'X' is going to cut it. But thank you for caring". I say the above sincerely. Most people just are clueless.
I've found if I start off saying arthritis, instead of describing the disease generically (chronic, degenerative, autoimmune), I get a better response. Either people are so freaked out and disgusted they carefully never bring it up again (which is sometimes a preferable response), or they ask questions cautiously, knowing that they are dealing with something serious.
This pushed my buttons today, because after 1.5 yrs at a very small school, I disclosed to the volunteer coordinator and the front desk person that I had this disease. I wasn't in for 2 weeks because I was having a massive flare and couldn't drive or really walk, my husband was doing the school dropoff and pickup and things like taking in cookies. The volunteer coordinator was all "that sucks, don't worry about volunteering" and the front desk person was all "oh, you poor thing (in a tone like I was dying). Have you tried apple cider vinegar?" and the last nearly put me over the edge.
Your immune system is attacking your body and while some days, like today, you can function, there's other days when it hurts so bad you want to cut off you ******* leg. That's how I felt anyway when I was flaring.
What I want to do is cut my head off and stick it in a robot (ie, cut ALL my body off, it hurts that much). Or else get a full body epidural. Or..... you get the picture :)
Andrew said:
there's other days when it hurts so bad you want to cut off you ******* leg. That's how I felt anyway when I was flaring.
During my last epidural I asked them if they could flip me on my head while it was being absorbed. I figured if I had a full body epidural on board it might help. I asked very nicely but they refused..........
It shouldn't even be called arthritis! I get the same reactions all the time. " Oh yeah, my grandmother has arthritis in her elbow." I'm 39 years old and played college baseball. I was fit and now there are times that I can't get out of bed! It's sooo much more, but people don't understand. That's why we are here for each other. I've found like others that have commented, that I don't even use the term arthritis and I also refer to it as RA because that is somewhat familiar. Good luck!
"Chronic autoimmune disease" is a good sub for arthritis - I have started saying that... also mentioning taking chemo drugs really seems to get people to understand how serious it is. Although I also have a lot of very crunchy, natural friends who often bring up natural remedies they are sure will 'heal' me. I am pretty crunchy and natural but I have had flares that left me unable to walk to the bathroom. I could eat pounds of tumeric a day and still need MTX and steroids. I appreciate people caring enough to give their input but sometimes it is insulting when they suggest simple things, as if I would have never considered them or I haven't given serious thought to the heavy duty drugs I am taking.
Plendty of people have such reactions - some even may not want to accept they are personally seeing someone with a condition that is as scary as it can be. Others equate all terms of "arthritis" as the same thing they already have in their head. Soooooo - I inform that there are over a hundred types of arthritis and I have one of more nasty kinds, similar to rheumatoid arthriitis which means .....
Luckly I work in a setting where people understand it once explained. The seariousness of it didn't sink in till my step children (age 21 and 14) heard from their uncle (a pharmacist) while explaining to my wife, and me, about the meds I would be taking.
Some people think that most people exaggerate and/or play up for sympathy and therefore reject what they think is a drama ploy. Those kinds of people you can just dismiss and not worry what they think - because no matter what you could tell them won't matter anyhow.
Excellent idea Marietta! I will use this response and attitude in the future!
It's a shame though isn't it? There is so much unnecessary stigma attached to our disease... especially when really the pain and disruption to our lives now and in the future is so bad in the first place... Here is a link to an article from the Daily Mail in the UK ( Look at this misrepresentation of autoimmune arthritis from the Daily Mail ). The article is meant to explain autoimmune arthrititis and give some insight into new possible treatments but sadly the photo contradicts everything said and gives the public a ridiculous view of your average arthritis sufferer... I got this disease when I was 14 and have suffered terribly even though I take care of my weight and health and eat right and am positive and take extremely powerful chemo drugs and am not a faker or a hypochondriac...As people have said... this disease IS serious and is in some forms comparable to the other big bad diseases out there! Not that its a competition! This is just an example of how ignorant the media can be...BUT on the other hand, when I first saw this article months ago... although it saddened me, it also helped me to understand and accept that with the name ARTHRITIS attached to this disease, it will always seem insignificant or melodramatic to my employers, friends and family alike, therefore making me either weak or faking in their eyes. This article helped me finally come to terms with that. Still I wrote to the Daily Mail in the comments section when this article first appeared, thanking them for their article on my illness but also explaining to them the effect the photo had on me and may have on others... they never published my comment.
Marietta said:
I've learned to leave arthritis out of any casual interaction about my disease. I tell people I have a chronic, degenerative, autoimmune disease. If they demand the name, I say rheumatoid (at least some people know what that is). If they ask "Have you tried...." I say "actually, I take chemo drugs to suppress my immune system. I don't think 'X' is going to cut it. But thank you for caring". I say the above sincerely. Most people just are clueless.
I've found if I start off saying arthritis, instead of describing the disease generically (chronic, degenerative, autoimmune), I get a better response. Either people are so freaked out and disgusted they carefully never bring it up again (which is sometimes a preferable response), or they ask questions cautiously, knowing that they are dealing with something serious.
This pushed my buttons today, because after 1.5 yrs at a very small school, I disclosed to the volunteer coordinator and the front desk person that I had this disease. I wasn't in for 2 weeks because I was having a massive flare and couldn't drive or really walk, my husband was doing the school dropoff and pickup and things like taking in cookies. The volunteer coordinator was all "that sucks, don't worry about volunteering" and the front desk person was all "oh, you poor thing (in a tone like I was dying). Have you tried apple cider vinegar?" and the last nearly put me over the edge.
I agree that unsolicited advice can be annoying. I know people are trying to help, but I just end up feeling misunderstood. When someone refers me to a vitamin website, it’s an insult to my intelligence. Of course I have already scoured the Internet to find possible treatments that don’t involve scary drugs. Yes, I’m eating the right foods. The good thing is that now I’ve learned how to listen and ask sensitive questions when people talk about their own illnesses.
There is a doctor at work who told me yesterday that i was looking really well (it’s my 3rd week back after being out for 6 weeks) and asked how it was going. I told him I was pretty much the same. He then said something like “your better though, right.” I told him that I really wasn’t, but that I was tired of rotting at home and felt like work would help me get better. He gave me a funny look and walked away. I had another doc welcome me back and tell me how awesome I look. I told her that is one of my many talents, looking great while feeling like dirt. As a brest cancer surviver she had a good laugh and told me that I was pulling it of marvelously! A few minutes later, my charge nurse (who I had been in contact with while I was off) told me I looked terrible and wanted to know what my pain was.
For the most part, the people in my life get it. Every once in a while, I get some that don’t. I’m also a bit of a private person and don’t like to get into too many specifics with folks I’m not really close with. There are a few people at work who know and seem to understand, and they are the important ones (my charge RN and the clinical administrator, also my partner at work). I like to keep it to myself and when someone else asks, I don’t share a whole lot of information, nor do I really care how they react.
As for my friends and family, they totally get it. Or at least they do to my satisfaction. My husband, mom and my children are like my inner circle. As long as they understand, I am a happy camper.
When I only had symptoms of psoriasis, I had no idea that psoriatic arthritis existed. Not until Phil Mickelson came out with the Enbrel ad. Even then, I had no idea how bad it could be. Phil never talked about being in pain all the time, or how there were days that golf was the last thing on his mind. In fact, I never heard about him having this until the Enbrel ad. When I had my first flare, oh boy, I finally “got it”.
People can be jerks. I have decided that it is not my mission to educate anyone who doesn’t want to hear what I am telling them. Chances are, they won’t change their opinion and it will just be a waste of my time and emotional energy.
We could order those t-shirts that say, “My immune system attacks itself. What does yours do” with the psoriatic arthritis ribbon on it. Get 7 different colors for each day of the week?
Good feedback to your letter. I took the very good advice of dumbing down our affliction to just RA or rheumatoid Arthur-itis (which many people are kind enough to correct me about) or, amongst golfers, Phil’s disease-- seems to work. For me the fatigue is the worst of it-- and the the least understood–and the eye issue which shuts me down every night.
However…I also particularly appreciate Marieta’s (good on ya Tucka) remarks about the “have you tried” syndrome. What I like is how folks take umbrage if you don’t rush out and try that (Asian, homeopathic, tribal, celestial, organic, mineral, vegetable or animal) curative that helped their friend’s mother-in-law. They can tell you don’t want to improve if you aren’t painting yourself blue and snorting collagen!
[My rant o’ the day]
I’ve stopped explaining…most of the people I see really don’t get it…either that or they don’t understand…most haven’t heard psoriatic arthritis…unless the are golfers…I can’t blame them cause I was in their shoes once a upon a time.