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Educating my family and friends .. . ideas? #211844
07/04/11 09:25 AM
07/04/11 09:25 AM
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funchefchick Offline OP
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Hello folks - I have been lurking for a while now, and I need some help!

I'm a former athlete with Spondylitis, in my early 40s. Dx'd about 3 years ago and all the pieces finall fell into place about pain, fatigue, fevers, etc.

For whatever reason my parents - and some friends and other relatives - do not want to believe that I have this disease. I truly believe it is because they wish for me to be healthy and fit like I used to be so that I could be pain-free and have a rich and full life without all of the (extensive!) medications. What this means is that when I say I am 'not well today' or that I have more severe pain than usual they always ask why? I find myself repeating the same answers over and over again.

Or when I say we should move my disabled parking placard from my car to whichever car we are taking for the day, my dad asks if that is legal and do we really need to? Um. YES, and YES.

Does anyone know if there is a "So your loved one has A.S.; here is what you might experience" type of brochure or document out in the 'web ? I would be happy to help collaborate on one, if not. It is exhausting having to constantly re-explain - and justify - why pain limits my choices in my daily life.

I have sent "The Spoon Theory" around and posted it to my Facebook page and still ... I have to ask people to walk slower, or decline full-day hikes with friends.

What have people found to be successful in really explaining what Spondylitis is like, and how to reset people's expectations about what you are capable of on any given day?

Thanks!


FunChefChick and Pooch



Diagnosed undifferentiated spondyloarthropathy and Fibromyalgia Spring 2009.
Taking: Mobic (NSAID), Lyrica, Cimzia, Morphine Sulfate, Soma, Morphine IR.
Tried: MTX, Humira, Savella, Cymbalta, Enbrel
Had been employed full-time in the tech sector for 25 years; went on permanent disability leave starting April 2013.
Re: Educating my family and friends .. . ideas? [Re: funchefchick] #211855
07/04/11 02:01 PM
07/04/11 02:01 PM
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nisey Offline
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There are brochures offered on the site here. They are under resources. Not sure whether any of them will "fit" what you want. I have found that some family members and friends just can't deal with the fact I have an incurable disease. Many have never been able to accept it. It's hard because we look "fine" to everyone else! I hope you find something that helps. If you do, please come on and tell us about it. I would love for others to understand!

Blessings,
Nisey


It is what it is!
Re: Educating my family and friends .. . ideas? [Re: nisey] #211874
07/04/11 03:12 PM
07/04/11 03:12 PM

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hey, fun..why don't you contact the director, laurie savage, and tell her about your idea for a brochure like you have described.

she and the rest of the staff are extremely helpful, and i agree, the pamphlets they do have here that nisey mentioned are EXCELLENT for discussing our disease. i don't think they really help explaining it to others. i think the first set is free. go out to the resources section. then contact the office. they might really appreciate a draft of a pamphlet or small book like you discuss.

good luck, sequoia

Re: Educating my family and friends .. . ideas? [Re: ] #211880
07/04/11 03:40 PM
07/04/11 03:40 PM
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JenInCincy Offline
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Sounds to me like your family and friends are certainly intelligent enough to understand.... as Nisey said, and you theorized too - often people just don't want to believe it's true. I don't think you need to do more work at helping people understand what spondylitis is like. You just have to keep giving the same explanations over and over till they get tired of it and accept it. You can also try the more confrontational "what about this don't you understand? do you think I'm making stuff up?" That way, people can see how their being in denial doesn't help you - it hurts.

Sorry you're dealing with so much frustration from your support circle.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Educating my family and friends .. . ideas? [Re: JenInCincy] #211892
07/04/11 05:35 PM
07/04/11 05:35 PM
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Nan Offline
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Reading this made me tear up. It is such an invisible disease. And based on what I read from you all on these forums, I have it easy. I've also come to believe that many suffer from other "invisible" diseases or conditions.

My loving and caring husband asks me "How are you? How did you sleep? Does your back hurt?" When I am thorough in my response I would say: "My back always hurts, my hips ache and keep me awake, I get cramps in my legs when I stretch, my hands ache, the pain is moving to my ribcage, and I woke up every hour or so...." When I am not so thorough, I say, "About the same."

I went to a "bootcamp" workout to support a friend who'd invested in it. She repeatedly told the "instructor" I couldn't do such and such a move "because of her back." Truth: I couldn't or wouldn't do many of the activities because of my aching hands, hips, knees, and on and on. It's not just my back, I said under my breath. And I DID want to be able to walk the next day. So I modified.

I am a writer and editor. This gives me an idea to use my skills to write something to help our friends and family members understand what we go through -- on every level.

I don't jump on here often enough. Perhaps because it overwhelmes me how rampant this disease it and how many suffer. So many young people are suffering (I am 57 years young), including my best friend's 18-year-old daughter. Why?

Happy independence day to all! Count your blessings. When I do, it helps.

Last edited by Nan; 07/04/11 05:36 PM.

Undifferentiated Spondylarthropathy
...with hope and gratitude for a supportive spouse.
Re: Educating my family and friends .. . ideas? [Re: Nan] #211900
07/04/11 06:34 PM
07/04/11 06:34 PM
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nisey Offline
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That sounds like a wonderful idea Nan! We could really use something like that! We need people with that kind of creative talent to get our message out there and help people understand!
I agree. I count my blessings often. Otherwise it would seem pretty pointless to go on. I am 41 with a good husband, two children that I homeschool, two dogs who have me at their beck and call, etc.... Life is what you make it. We've been dealt some bad cards but we need to play them.

Happy Indepenence Day to you too!
Nisey


It is what it is!
Re: Educating my family and friends .. . ideas? [Re: nisey] #211940
07/05/11 02:23 PM
07/05/11 02:23 PM
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Something I've found helpful was writing a piece for the "Hope & Apples" AS Awareness Project. It took some guts, but I shared it on facebook and got some very empathetic appropriate responses, and more understanding from friends and family who didn't really get what was going on. I think Hope & Apples is great because it's a large collection of patients' stories, so readers can get a good look at the spectrum of experiences with this disease, without directing them to this forum where we say things we may not want friends/family to read.

http://www.hopeandapples.com/?page_id=956

There's my story. There was a large drive to get lots of entries during Spondylitis awareness month, but they're accepting submissions at any time. You might think about trying it. smile


Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol
Re: Educating my family and friends .. . ideas? [Re: iviary] #220690
11/03/11 04:44 AM
11/03/11 04:44 AM
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Nan, if you do get something written up for a brochure, I would happy to donate my skills as a graphic designer to create the brochure. I could create it as a PDF file that everyone could just print on their own ink jet as needed. smile I'm having the same issues getting my husband and family to understand. He seems to think I'm just being lazy on the days that I'm very fatigued or in a lot of pain. I just had a conversation with him, trying to get his input on whether or not to make the move from Mobic to Humira. I really wanted his opinion and he just starting cracking jokes. Ugh! Even my parents don't seem to really understand AS and I never know how just to explain it. A brochure aimed at family and friends would be perfect!


Dx with AS in 2009 after 15 plus years of symptoms ranging from debilitating pain in hip, neck and back, iritis and psoriasis
Re: Educating my family and friends .. . ideas? [Re: funchefchick] #221790
11/20/11 02:29 PM
11/20/11 02:29 PM
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Miel Offline
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I am so relieved to find this post. I'm having "The Talk" again with my brother in a couple hours and was frantically searching the web to find something to help me get through this. I was diagnosed 11 years ago and at first my brother and I had this talk every other week or so, but gradually it's gotten less frequent, until now it's about every 18 months. If I bring it up - if, for example, I say, "I'm having a bad health day and can't do that today." - he either responds with angry silence or a change of topic. He used to ask what was wrong, but the answer always angered him and he has stopped doing even that. So it's partly my fault that I've let him get away with avoiding the topic.

But recently, he sent me an ultimatum. Either I shape up and start acting like I did 11 years ago, or he will no longer be supportive of me (His "support" is very minimal, consisting mainly of bringing a pizza over once a month or so). I wrote back that as long as he refused to acknowledge my illness, none of my motives or behavior will make sense to him. He wrote back that he does acknowledge the disease, but he doesn't understand why I can't do all the things I did before I got sick; I just have to put up with the pain and buckle down and do it.

He's also done and said several things that indicate he wishes I would die.

Re: Educating my family and friends .. . ideas? [Re: Miel] #221803
11/20/11 10:03 PM
11/20/11 10:03 PM
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WhiteCell Online
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I think that some information sheets on AS easily found on the web would educate and serve him well.

I think that your last statement about him wanting you to die, should be appropriately handled with a licensed therapist as it is alarming to a reasonable person.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Educating my family and friends .. . ideas? [Re: WhiteCell] #221826
11/21/11 03:02 PM
11/21/11 03:02 PM
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Miel Offline
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Thanks for your suggestions. My brother has information he could read; he either doesn't read it, or he only remembers the information that is positive and encouraging, so he thinks the disease is no big deal and I should be able to do everything I did before I got sick.

As for wishing me dead, yeah, it's very alarming. But he won't actively kill me. I take precautions when I'm with him, though, that an "accident" wouldn't happen without it being clearly his fault. He's very concerned with appearances and wouldn't do anything that would make him LOOK careless or heartless. Mostly, he just hints that I should kill myself and he keeps trying to get me to eat unhealthy foods. My cardiologist told me (and him) that I would be dead in five years if I didn't get my blood pressure down, which means, among other things, a low-fat, low-salt diet. Ever since, my brother has been bringing a pizza with him whenever we get together, something he never did prior to that diagnosis. That kind of thing.

Anyway, I was glad to see that other people have family members who are in denial about AS and that some work is hopefully being done to address that issue with literature designed specifically for family members.

Re: Educating my family and friends .. . ideas? [Re: Miel] #221850
11/21/11 05:41 PM
11/21/11 05:41 PM
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JenInCincy Offline
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Originally Posted By: Miel
As for wishing me dead, yeah, it's very alarming. But he won't actively kill me. I take precautions when I'm with him, though, that an "accident" wouldn't happen without it being clearly his fault. He's very concerned with appearances and wouldn't do anything that would make him LOOK careless or heartless.


If you have to take these types of "precautions" this is not someone you should be alone with, whether he's your brother or not. This is very scary.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Educating my family and friends .. . ideas? [Re: JenInCincy] #221932
11/22/11 01:32 PM
11/22/11 01:32 PM
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WhiteCell Online
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I sincerely recommend that you speak with someone about this relationship.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Educating my family and friends .. . ideas? [Re: WhiteCell] #222165
11/27/11 12:38 AM
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I, too, am concerned about what this relationship is doing to you! If you truely fear he will hurt you, you need to let him go. I know this sounds harsh but I have been in a similar situation with my mother. She is mentally ill and has always been abusive verbally. Two years ago it got to the point where I was afraid she would do something to me that she would later regret. She used to get angry and do things to people while she was mad and then say she didn't remember them later. (ex. She almost ran over my sister-in-law with her car.) I wound up moving away and not leaving a forwarding address. I am much happier now. (There were other family issues too.) Your safety is important! Your health is important! His whole attitude toward you is disturbing.

Please be safe.
Blessings,
Nisey


It is what it is!
Re: Educating my family and friends .. . ideas? [Re: nisey] #225480
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So, has anything come of the brochure? I could sure use it. My family are rubbish at supporting me. I don't think my brother has even acknowledged that I have Spondylitis!

Miel, please don't be alone with your brother. You need people around you who will lift your spirits, not someone who will drain your energy. He doesn't sound like a very stable person. Be VERY careful.


34yrs old: Partial Spondylitis diagnosis (sacroiliitis, synovitis of neck, synovitis of wrist), IBS (whatever that means!), Raynauds Syndrome, TMJ malfunction, Episcleritis

Currently on no meds. Managing with many different natural approaches. Doctor would like me to take DMARD after NSAIDs didn't work or caused allergic reaction.

Studying Nutritional Medicine part time and mother to lovely 5yr old daughter
Re: Educating my family and friends .. . ideas? [Re: funchefchick] #226962
02/09/12 01:22 AM
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I have the same problem, well it is going away due to horrible 'flares'. I do get the occasional call, "maybe all you have is...". I think this is the way they cope.

Jacquie
AS. 7 years Dx, Simponi, methotrexate, meloxacam, lidoderm patches, valtorin cream, Vicodin


AS dx'd 7 years, Simponi, methotrexate, meloxacam, lidaderm Patch, valtorin cream, Vicodin
Re: Educating my family and friends .. . ideas? [Re: WhiteCell] #227037
02/09/12 10:00 PM
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Hello. I would like to volunteer to help with the brochure idea.

Nan and Squeezie, I was wondering where things are at this stage. Please let me know if I can assist with writing or graphics.

As many of you wrote, I too have had trouble with having family and friends understand spondylitis. Most seem to have very good intentions and just want everything to be better, but it's difficult to relate to them emotionally and logistically. I can't imagine what it must be like to deal with people who are trying to interfere with recovery. Eek!

As of today, I haven't found a good solution yet for explaining what spondylitis is like--apart from referring folks to this site.

Last week, I joined the PEERS program to get assigned to a mentor. I am hoping the mentor can help me with learning additional ways to manage the condition and block out pain, as well as being someone with whom I can talk about what the extra-rough days are like. I am hopeful that this will help on many levels--especially with the feelings of isolation that tend to go along with the days that have more pain than others.

Thanks and warm regards,
Susan

Re: Educating my family and friends .. . ideas? [Re: funchefchick] #267346
06/23/14 01:31 AM
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funchefchick Offline OP
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Hey I am revisiting this thread from a few years back. Since then my immediate family has come around after seeing me suffer in person for a while, so they finally have 'got it'. My family gets it, but my friends? Not so much. My very closest friends would like to understand but just don't, not yet. My more casual friends have just plain disappeared; moved on with their lives. I don't think they intentionally

But I still think a brochure targeted to to loved ones which has a *realistic* description of what the patient could be experiencing and how people might support them could be helpful. I think a lot of us have found the documentation about Spondylitis to be aimed at the newly diagnosed, and it aims to be not-so-scary. Like it tells everyone that with proper medication and treatment one can live a normal life. For some people that might be true but for a lot of us it just is NOT.

Do people think a brochure aimed at friends and family of Spondylitis sufferers is still something we should pursue? Does this already exist somewhere now? Thoughts?


FunChefChick and Pooch



Diagnosed undifferentiated spondyloarthropathy and Fibromyalgia Spring 2009.
Taking: Mobic (NSAID), Lyrica, Cimzia, Morphine Sulfate, Soma, Morphine IR.
Tried: MTX, Humira, Savella, Cymbalta, Enbrel
Had been employed full-time in the tech sector for 25 years; went on permanent disability leave starting April 2013.
Re: Educating my family and friends .. . ideas? [Re: funchefchick] #267787
07/29/14 08:35 PM
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Funchef - a few thoughts, FWTW . . . I definitely get your point that in some families a too-cheery picture can undermine support, and I'll bet SAA staff do, too . . . I wonder if a page on the website clearly identified as a resource for family and friends might be less expensive and quicker to produce than a printed brochure. (I didn't see one, but maybe it already exists.) A simple, easy-to-scan design and links to more info, so the reader isn't overwhelmed by lots of text in often unfamiliar lingo on a potentially scary or depressing topic and with the bonus emotional charge of existing family dynamics. If staff creating the text wanted input, feedback, etc. from those of you who are really struggling with loved ones minimizing your struggle, I'm sure this group would be generous with it. Some of us would be more likely to email a link to family/friends than hand them a brochure, but a printable version of the web page is an optio, too. FWIW.

Re: Educating my family and friends .. . ideas? [Re: funchefchick] #267850
08/02/14 01:28 AM
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funchefchick Offline OP
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Thanks for the suggestions! I am certainly open to different media formats. I'd love to have a more realistic page in the existing SAA content. I've heard from many other patients that the content is so cheery and 'you can live a normal life' type stuff that both family and friends dismiss the condition. It is reductive. I know that the creators were likely trying to remain positive, and trying not to scare the newly-diagnosed. That's all well and good, but people cannot realistically make plans for how to manage their disease if they don't have a realistic picture of how things are possibly, likely, potentially going to be.

So yes, content on a web page instead of or in addition to a brochure would be just fine with me. Heck, as far as production costs - I was thinking that a formatted PDF could be shared so that people can print their own double-sided pages as needed, free of charge if necessary.

I know that a single page of content is not going to solve everyone's un-supportive friends and family problems. But jeez I think it will feel better to have SOMETHING with our most frustrating communication issues clearly articulated and available to share, you know?


FunChefChick and Pooch



Diagnosed undifferentiated spondyloarthropathy and Fibromyalgia Spring 2009.
Taking: Mobic (NSAID), Lyrica, Cimzia, Morphine Sulfate, Soma, Morphine IR.
Tried: MTX, Humira, Savella, Cymbalta, Enbrel
Had been employed full-time in the tech sector for 25 years; went on permanent disability leave starting April 2013.
Re: Educating my family and friends .. . ideas? [Re: funchefchick] #268320
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My goodness, it is so reassuring to read that I'm not the only one living with a not "normal life". I had decided I most certainly had done something wrong until I stumbled upon this thread. We are still in the process of trying to get my meds under control, but I'm definitely no where near "normal".

Re: Educating my family and friends .. . ideas? [Re: funchefchick] #273226
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Tell the people closest to you. You will need some support. It's 'ok' if they totally don't "get it" because they just won't completely understand if they never have AS. If the folks closest to you are at least willing to listen, you've got a good team, in my opinion. Wishing you the best! smile

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