I’ve been thinking about this lately. Being almost a year into the diagnosis I don’t talk about it much. My immediate family knows about it. But they don’t really understand. They know I’m in pain and they know I’m taking meds to help mommy feel better. And on vacation I needed a cane because my ankle was flaring and I could barely walk.
My co workers don’t know of my diagnosis. They have seen me limp around the lab for months some know I see a rheumatologist But not really told anyone why. Nor have I said anything to my brothers or there family. And I suspect one if not both of them suffer from similar conditions ( both have severe back issues for being on the younger side of life) anyway back to my question how do you explain to others PsA
It make people terribly uncomfortable (not that I don't add to it if they are jerks) and awkward. I simply say IF THEY ASK that I have a progressive inflammatory disease that attacks my joints, skin, and connective tissue. It waxes and wanes. I never use the word arthritis, or autoimmune. If they don't get it from there, they won't get ever get it. If they want a name I give them the correct name "Seronegative Psoriatic Spondyloarthropathy" At my age I have finally come to terms with the fact, you can't fix stupid. (Stupid is different than ignorant) Stupid requires an explanation. Now of course you work in a medical setting so they will break it down. Spondyloarthropathy as you know is a condition/disease that among other things causes arthritis. Arthrits is ONE of many things this disease causes. We tend to obsess on it. We shouldn't. Its only a part of it.
As Lamb says, though, there’s not much point in explaining. For me, it’s one of the things that makes having this disease really difficult. Pretty much nobody gets it. If I needed a heart stent, everybody would get that, and they’d be sending cards and casseroles. But this painful, progressive and incurable disease, it don’t get no respek.
I say I have RA. Then, if they want a little more detail, I say I have PsA, which is basically RA with bonus P. If they want a little more detail, and they don't know what RA is (most people know that much), I explain it is an chronic autoimmune disease. I don't go further than that except with people who are very close to me (close friends and family understand just by living it with me...I don't hide anything).
As always, looks like there is already good advice, but for what it is worth...
If asked, I say that I have the same condition as Phil Mickleson, the famous golfer. Although I haven't been as lucky. I tried Enbrel and it didn't help. My golf game is still lousy.
Seriously though, I am reaching a point where I do not feel compelled to answer. If someone persists, I deflect with a quick, 'why do you ask?' That usually puts an end to most queries. And on occasion, you get an unexpected and supportive reply. I recently had an encounter with my new dental hygienist who queried me & I cringed just not wanting to go there. So I hit her with a quick why-do-you-ask and she quickly explained she has lupus. Turns out she saw me having a bad day and just wanted to make a connection and empathize. She recently started on a drug trial that has made all the difference for her & wanted to remind me that there are always new developments on the horizon. As Lamb has already pointed out, there will always be those people who demand an explanation. I just keep it brief because it typically just goes in one ear and out the other.
I have to admit though, I struggle with a related line of questioning, namely a work or profession question. I had to give up my job as a nasa engineer and am now long term disabled. It not that I am vain about my former job or care what people think about my employment status. But inevitably that conversation will turn to my health. So the latest response I am trying out is 'early retirement'. Though in this economy, if I say I am unemployed that usually ends the query, especially if I act like I am about to hit them up for a job.
My worst public encounter didn't even involve any conversation or questions. I was struggling to push a cart full of groceries toward the parking lot when a woman behind me decided to let me know that she was less than pleased with my progress. She rammed her cart into the back of my ankles after which she darted across to the other side of the parking lot aisle. I am a grown man & a military vet but the pain was ... shall we say ... attention getting. I thought it must have been an accident until I look over, and through my very watery eyes, see the same woman glaring back at me. She made a point of stopping to let me know ... it was no accident. So these days, any encounter I can walk away from, I consider a win... I will take a little awkward conversation over random acts of shopping cart violence any day ;)
The thing to realize is that there are no wrong or right words... people that care about you, care about you. You do not need to explain yourself. Knowledge about your life, your health, your feelings ... no one has right to demand that from you ... it is a privilege that you choose to share with them. And if you don't feel like sharing ... don't. It is not all going to go well. Some people pull away, some people may get uncomfortable and awkward ... but that has nothing to do with choosing the right words. It largely has to do with them. Don't feel you need to explain yourself. Just do what feels right for you.
dandlyons- You may be a grown man, but the woman who hit you with her cart was either not a grown woman, or had something seriously wrong with her. I can't imagine anyone ever doing anything so crazy. I think I would have made the biggest stink ever, possibly including calling the police. That's an assault, pure and simple.
I really like the “why do you ask?” line. It usually works pretty well: either they back right off or (occasionally, as you found out) you’ll get some genuine concern.
I take care of other people's kids, mostly starting as an emergency need - either free or for little more than it takes to feed/entertain them - and feel the parents need to know that I have PsA and what that means for me so they're not surprised when I have spica splints on my hands or am shuffling around the house or need to take a day off for an infusion. I don't have "co-workers" unless you include my kids, who often help with the "extra" kids because they love to. LOL
To extended family, I answer questions as they come up. If I were to think that a family member might have PsA, I'd urge them to get checked out.
I blog a lot about my PsA, so often I'll refer friends and family to my blog if they want an idea of what living with PsA looks like for me. Many friends don't realize I've been in and out of a wheelchair and how severe this disease has been for me because they've only seen me when I've felt up to going out.
As far as other people - I answer questions as they come. I have no problem sharing with people asking me about why I, an apparently healthy person, am parking in a handicapped spot, as they're doing so out of genuine concern for people who need the spot. They won't know about "invisible illnesses" unless someone tells them, so I explain to them briefly what I'm dealing with. If people are rude, it rarely bothers me - some people are just rude, or downright nasty. I doubt anything I can do or say would change that, but I usually smile and tell them I hope their day improves and limp away. LOL
I've actually had wonderful experiences explaining bits and pieces of my PsA to people I deal with often - the cashiers at the supermarket (I usually make a point to go to the same few cashiers) who know it sometimes takes a second for me to get my card out of my wallet when my hands aren't working and who ask how I'm doing with genuine concern and to know if I need lighter bags and/or help getting my groceries to/in my car; members of my congregation at church who now understand my failure to stand at all the proper moments at worship is due to physical pain, not irreverence; and friends who understand that my canceling plans is not because I'm a horrible friend, it's because I'm dealing with a horrible illness. From my point of view, I'd rather educate people in my community and my life about PsA and other invisible illnesses than deal with the consequences of dealing with people who don't understand.
I don't explain it. Only people close to me know about it and they don't understand. When people hear arthritis they think they know what it is. I find even my family doesn't want to know much about it, they certainly haven't read the info I've provided to them. Why....I think they're afraid to know.
I don't try to explain it. If I have trouble picking something up at work or whatever, I don't say a thing, I just deal with it as best I can.
What a brilliant explanation tntlamb! I am going to have to memorize that one. Chants to self," I have a progressive inflammatory disease that attacks my joints, skin, and connective tissue. It waxes and wanes." I am an educator in an elementary school setting. A teacher on crutches gimping around doesn't exactly go unnoticed. Sadly... Parents, colleagues, administrators, and especially students feel no shame in running up me, pointing, and exclaiming "WHAT DID YOU DO TO YOURSELF?!?!" Believe me, so much of me would love to tell them to find their manners, and stuff it. However, I love my job, and don't want to make enemies. Using the word "arthritis" as an explanation has been such a trap for me. If and when I resort to calling it PsA, I repeatedly have people telling me how everyone and their grandmother cured their arthritis by (insert useless information here). Your explanation gets the point across, and doesn't open me up to hearing every catch all cure under the sun. Thank you, I can already tell already awkward conversations going a bit more smoothly now.
tntlamb said:
I don't.
It make people terribly uncomfortable (not that I don't add to it if they are jerks) and awkward. I simply say IF THEY ASK that I have a progressive inflammatory disease that attacks my joints, skin, and connective tissue. It waxes and wanes. I never use the word arthritis, or autoimmune. If they don't get it from there, they won't get ever get it. If they want a name I give them the correct name "Seronegative Psoriatic Spondyloarthropathy" At my age I have finally come to terms with the fact, you can't fix stupid. (Stupid is different than ignorant) Stupid requires an explanation. Now of course you work in a medical setting so they will break it down. Spondyloarthropathy as you know is a condition/disease that among other things causes arthritis. Arthrits is ONE of many things this disease causes. We tend to obsess on it. We shouldn't. Its only a part of it.
Yes Stoney ... the woman was seriously crazy ... and to be honest ... I was stunned .. it took a while for me to fully realize what had gone down ... I am just glad she wasn't in her car at the time ;)
Stoney said:
dandlyons- You may be a grown man, but the woman who hit you with her cart was either not a grown woman, or had something seriously wrong with her. I can't imagine anyone ever doing anything so crazy. I think I would have made the biggest stink ever, possibly including calling the police. That's an assault, pure and simple.
The same as a lot of others, I no longer say the Arthritis word it just seems to pigeon-hole me into the same category as everyone’s Great Aunt… (insert name here) and leads to being told I need to change my diet, used the cure of cider vinegar, smoke pot, dance naked withershins round Stonehenge So now I just say I have PsA which is an inflammatory condition which effects my joints and tendons/ligaments and no 2 days are the same.
As always, looks like there is already good advice, but for what it is worth...
If asked, I say that I have the same condition as Phil Mickleson, the famous golfer. Although I haven't been as lucky. I tried Enbrel and it didn't help. My golf game is still lousy.
Seriously though, I am reaching a point where I do not feel compelled to answer. If someone persists, I deflect with a quick, 'why do you ask?' That usually puts an end to most queries. And on occasion, you get an unexpected and supportive reply. I recently had an encounter with my new dental hygienist who queried me & I cringed just not wanting to go there. So I hit her with a quick why-do-you-ask and she quickly explained she has lupus. Turns out she saw me having a bad day and just wanted to make a connection and empathize. She recently started on a drug trial that has made all the difference for her & wanted to remind me that there are always new developments on the horizon. As Lamb has already pointed out, there will always be those people who demand an explanation. I just keep it brief because it typically just goes in one ear and out the other.
I have to admit though, I struggle with a related line of questioning, namely a work or profession question. I had to give up my job as a nasa engineer and am now long term disabled. It not that I am vain about my former job or care what people think about my employment status. But inevitably that conversation will turn to my health. So the latest response I am trying out is 'early retirement'. Though in this economy, if I say I am unemployed that usually ends the query, especially if I act like I am about to hit them up for a job.
My worst public encounter didn't even involve any conversation or questions. I was struggling to push a cart full of groceries toward the parking lot when a woman behind me decided to let me know that she was less than pleased with my progress. She rammed her cart into the back of my ankles after which she darted across to the other side of the parking lot aisle. I am a grown man & a military vet but the pain was ... shall we say ... attention getting. I thought it must have been an accident until I look over, and through my very watery eyes, see the same woman glaring back at me. She made a point of stopping to let me know ... it was no accident. So these days, any encounter I can walk away from, I consider a win... I will take a little awkward conversation over random acts of shopping cart violence any day ;)
The thing to realize is that there are no wrong or right words... people that care about you, care about you. You do not need to explain yourself. Knowledge about your life, your health, your feelings ... no one has right to demand that from you ... it is a privilege that you choose to share with them. And if you don't feel like sharing ... don't. It is not all going to go well. Some people pull away, some people may get uncomfortable and awkward ... but that has nothing to do with choosing the right words. It largely has to do with them. Don't feel you need to explain yourself. Just do what feels right for you.
