By Andrea on Tuesday, November 07, 2000 - 01:04 pm:

I have just returned from holiday which we had spent with my in-laws. One of the biggest problems I have in particular with my mother-in-law and my sister-in-law is the lack of freedom I enjoy once I am over there: they literally plan every single minute of our stay, but behind our backs and then present us with the "fait accompli". Due to my joint problems and the exhaustion and pain going with it I have quite often in the past calmly and politely said that I would never manage all these activities. But my protests fell on deaf ears. This time, I asked in advance what was planned only to see my sister-in-law flying off the handle calling me rude and ungrateful, and telling me that my joint problems were just an excuse, and if it were not that it would be something else. She also told me that I need not make the sacrifice any more to come back. So we packed and left. Sounds familiar, anyone?

By Annie on Wednesday, November 08, 2000 - 11:33 am:

Hi Andrea,

Boy do I hear you! My mother-in-law still thinks there is nothing wrong with me and it is all psychological! I have stopped telling her how many joints are problematic as she just throws her eyes heaven-ward in disbelief, or tells my sister-in-laws I can't cope with problems others could!! My husband is no use at standing up to his Mum and, sadly, we moved away from our home town as it would have been divorce with no support from him and disbelief from his family. Congratulations to your husband for his support and understanding.

By Gwen on Wednesday, November 08, 2000 - 11:55 pm:

Andrea, you have come a long way. My warmest congratulations to you for standing up to your in-laws. I think in-laws are bad enough without having such rude, callous ones. They sound like the worst kind of manipulators. My ma-in-law is like that and used to have every minute of our (Thank God infrequent)stays organised for us until my brother-in-laws wife and I made a concerted stand against her. If she said she'd planned an activity we'd be terribly apologetic and say we wished she'd let us know earlier as someone else had invited us out and it would be terribly rude to cancel at the last minute, wouldn't it. Needless to say we had no such invitation but after a few of these excuses she actually did ask if we wanted to be included. We also made a stnad in other ways. Ma-in-law always made tea and never asked if we would prefer something else so we'd wait until she poured it and then ask if she had coffee instead. Eventually this had the same result.
I think in ma-in-laws case she had gotten so used to ruling a family of unassertive males who were quite happy to have decisions made for them that she assumed she had compliant daughters-in-law also. She knows better now.
Do keep being assertive. Hopefully your in-laws will realise that you have the right to be consulted over things that concern you.

By Abigail on Friday, November 10, 2000 - 11:27 am:

sigh ... i definitely get tired of going home for the holidays and hearing, yet again, "what do you mean you won't help us carry the table? funny how your joint problems always come up right when we need a little help around here." i find it hard to be assertive, especially because a lot of my relatives are "double-jointed" and have never thought anything of it; they don't particularly have the pain i do, and they tease me about it. i've finally realized that it's not that my family doesn't believe me, it's just that they can't imagine having pain that doesn't ever go away. for me, it's never going to be worth it to hurt myself "just this once" for their sake. it's just a different kind of body-awareness, i guess. i definitely do sympathize.

By Diane on Wednesday, November 15, 2000 - 01:12 pm:

When it's a child, like my son who was just diagnosed, the family and teachers think it's just an excuse. His karate teacher thinks we're making it up so he doesn't have to do all the things in class. It's good to know there are others out there with the same problem.
By the way, his favorite thing to do is hang from anything, which is now known to be one of the worst things to do (his shoulders dislocate). He knows not to and understands; I just hate to tell him he can't play like a normal kid. So few people would understand that he has a disability (I guess if it's not visible, people just don't beleive what you say; sad, isn't it).

By Elle Elàn on Tuesday, November 28, 2000 - 11:35 am:

Hi
I'm in a lousy mood cause I'm hurting bad about everywhere in my body last few days. Its my own doing for I've been overdoing things lately in preparation of 5 dec - st nicolas in holland.I turned a FURBY into a LERBY ( I stripped it of its fur and gave it a leather skin ) for my nearly 8 yr old daughter who has astma. Needless to say the needlework was just a few stiches too much. I also sprained both ankles and because of the limping my knees and hips are sour. Ah well ,nothing new to anyone of you really.What really ticks me off though is the following: I ride a 'handicap-car'.It's some sort of golfkart on a moped-engine.It gets me almost everywhere for I can ride it on the road (exept the highway ofcourse) sidewalk and bicycle-paths.I drive my daughter to school in it.There I usually get out and go sit on the bench where I talk to my 'friends'. Only when the bench is soaked from the rain and the other mothers wait inside the schoollobby I stay in my wagon.Lately though I was in too much pain to get out and walk to the bench and here's the thing; the other mothers won't even greet me as they walk by.They just avoid looking in my direction whenever I stay in the parkingplace It's not as if they can't see me- believe me my wagon sticks out like a sour thumb.but it's like they don't want to know me when I'm in my wagon. At first I thought I was imagening it -maybe they didn't see me IN the car.But today someone walked up to me ,turned out she needed some info. If she saw me today then in spite of pretending otherwise she did see me all those other times.I don't know whether I should just ignore them too or blow my horn really loud so they HAVE to look my way! I know I shouldn't let things like this get to me but sometimes I really can't stand it!I don't ask for pity just a friendly greeting or nod would do!Has anyone of you have simular experiences? Sorry if I sound selfpittied.Like I said I'm having a bad day and just felt like spilling my guts.Thanks for letting me.

By TJ on Tuesday, November 28, 2000 - 01:49 pm:

Similar experience? Only all the time. I've also been diagnosed with lupus and inflammatory arthritis. I just love to hear people tell me they understand, and in the next breath it's "I know you're hurting, but ..." And the "but" is never something little -- it's always some big, major deal. It says to me they are either patronizing me, or disbelieving me, or both. I have friends and family that prefer to believe I don't exist, unless, of course, THEY have a problem they want to talk about or something they want done. Otherwise, they stay as far away as they can. You can tell these people easily, because when the subject comes up, they get that distant look in their eyes, and start answering, "mmhm," to everything -- and there's always the old stand-by, uncomfortable silence.

I know that sounds kind of bitter -- in fact, I'm pretty sure it's bitter. But I know what you mean; it's very frustrating. It makes you want to do something outrageous to FORCE them to notice you, even if it's not in a good way. Like many of us with this problem, I've tried really hard to keep things as normal as possible, but some things have had to change. I've accepted that; it just seems that a lot of people around me haven't. At least here, you're not alone.

By Bridget on Wednesday, November 29, 2000 - 01:25 pm:

I second that, indeed that is a very common experience for all who have illnesses and conditions which are poorly understood and notknown about or acknowledged by many. I know for a fact that my husband (who has EDS/HMS) and i have far fewer friends than we would if he were normal. Basically no one wants to hear about it, and some don't even believe it, think he's nuts, etc. Sometimes it's more overt, and sometimes it's more subtle, but you feel it constantly. The key is to somehow find the strength and faith to just ignore people like that, and focus on the friends and family you have that do understand, or others who have had similar problems, and can relate to chronic pain. It's sad that others are missing out on your friendship and acquaintance because of their own smallness.
Bridget

By Elle Elàn on Friday, December 01, 2000 - 09:48 am:

Thanks for the support!
Today I did something I normaly would NEVER-EVER do.
One of the women I used to chat with all the time and ignores me whenever I stay in my wagon passed me by and because of the position she parked her car in she couldn't help but look straight in my face: I looked straight back and turned my head.She probebly couldn't believe it 'cause in the afternoon she looked in my direction on purpose(after turning it away for about three weeks!) and again I! turned my head . And you know what? I never would have believed it but it felt good! I figured that if she doesn't want to know me when it's visibel to the world that I'm handycapped then she doesn't want to know me at all! On the bright side: a lot of children do greet me!

By Patrina on Sunday, December 03, 2000 - 02:40 pm:

Dear Elle Elan,

Maybe you've already tried this, but I'll ask anyway. Have you waved at the other mothers when they glanced your way? It's just possible that they don't realize why you're staying in the cart and so they think you don't want to talk. I've had things like that happen sometimes, where I thought I was being shunned and later discovered it was my own, I don't know what you'd call it, shyness maybe?

I use a similar cart (though smaller) when I go to the huge Wal-Mart (discount store) here. They have some available for customers to use while shopping when they need it. I have found that some people do just want to ignore me because they're uncomfortable. A lot of people, though, and you're right, a lot of kids, are very open and glad to say hello, 'excuse me' when we're in each other's way, or make small talk about how we keep meeting in the aisles. On the whole, it's a pretty good experience. The thing is that I sometimes need to make the first move, say the first 'hello.'

If they're 'closed,' their faces show it, and I just move on. But plenty of people treat me normally.

Just wanted to tell of my experience. Hope you're doing as well as possible.

Patrina

By Elle Elàn on Monday, December 04, 2000 - 11:34 am:

I did smile and wave at them and for a while I told myself that maybe they couldn't see me sitting in my car.But others did and the descriptions of vague looks and doing the utmost not to look straight at me that TJ ( and others )gave matches theirs.And more so my 'friend' did see and walk up to me when she needed something from me.I agree though that their behaviour must not become a reason for having a grudge against the rest of the world.It's just so uncomprehencable that those who I considdered my 'friends from school'act that way. I would sooner expect this behaviour from strangers.I like to give people the benefit of the doubt though I know I often keep that up too long.

By Gretchen on Friday, December 08, 2000 - 09:58 am:

Dear Friends

I am so proud of all of you! We have a fairly invisiable disease and constantly face disbelief and ignorance from friends, family and strangers alike. Last year I lost my best friend because she did not believe that there was something wrong with me. She has multiple back problems that were easily diagnosed. I give her a great deal of credit she not only survived cancer in her spine, but recoved from a fall that broke some bones in her back.

She called me one day and told me that i was making a big deal out of nothing and had become very strange. I was simply going to have to learn to deal with my little back pain and stop being a hypocondriack. Her listing of my problems went on for twenty minutes before I told her I had to get off the phone. She was one of the few people outside my family who Knew that I had any sort of problem. I have since come out of the closet so to speak. I now have a group of friends who are healthy and support me in my effort to lead a normal life. I am now being honest and up front with people about the HMS. I don't whine about it but when I have had enough, I let them know. I am amayzed at how helpful and understanding the world has been lately.

Now if I could just get the old family to get a clue.
have a wonderful holiday season
Gretchen

By Jane on Friday, December 08, 2000 - 10:23 am:

Gretchen,
Thanks so much for the lovely message. It's very difficult coming out of the closet, because there are always going to be people who think we're imaging it, or who've had a sore shoulder once and think they understand completely. I recently confronted my mother about her consistent dismissals. I usually get a, "Yeah, well, %^*&** happens," and that's that. I finally gathered up my courage and asked her why she doesn't believe me, when she generally trusts me about everything else, and she said in surprise, "I DO believe you. It's just very hard for me when you're in pain and there's nothing I can do about it." Since the talk things have been a little easier -- she's careful to acknowledge rather than dismiss, and to look for solutions with me. I'm learning how to talk about my disorder better -- so that it doesn't sound like I'm on the verge of death, and so that my friends and family have a better understanding of what they can do to help. I DON'T want stories of, "once i broke my finger, and boy, it hurt!" I DO want people to pat my back and tell me that it's ok to take it easy when I'm having trouble. I'm sure everyone understands .... Thanks so much for your support. Happy holidays!

Jane

By Lin on Saturday, December 09, 2000 - 12:20 pm:

my anatomy and physiology teacher knows about my hypermobility, and that i have chondromalacia patella in both knees. this is not complaining but i realized how little people know or even understand the disease with a remark of his. me and 2 friends did our power point project for the class on hypermobility. i went on, being the most knowledgable (not saying bad for my friends, i just have done so much research when i was diagnosed), about how it is inherited and genetic, the collagen fibers are bad, the injuries occuring from it, treatment and no cure, etc bout the disease with the help of my friend. at the end of the project, my teacher asked me something that hit me hard. after all that explaining VERY well all aspects of the disease, he asked me "isnt that the same thing as being double jointed?" i had even explained double jointed can come from stress stretching the ligaments, while hms ligaments are too long. people jsut dont understand the disease, yet so many people suffer. one of my friends in doing the project had a bit of hypermobility, double jointedness, in his fingers. so many people do suffer from this, and it needs to be more well known and understood. i would not be in the situation with the injuries i am dealing with if it wasnt for all the people who called me a hypochondriac when i tried to get help, even my own mother did, and still does. i am 15, and cant achieve anything without her help, yet when i tried to demand a referral to a rhematologist about hms and to be checked for EDS III, she refused, saying it wasnt neccessary to the doctor. i got no referral. i did go to an orthopedic surgeon, who was fairly knowledgable in hms, but not eds, who diagnosed me hms. sorry if its realy long, just venting i guess.
Lin

By Vicky on Friday, January 12, 2001 - 09:10 am:

To All,
Boy am I glad I found you. I had been having arthritis like pain in most of my joints, but most painfully in my wrists since I had a bad virus just before christmas '99. After a year of being told I might have everything from depression(yes that doctor was that helpful! He is no longer my doctor), to a temporary condition that would settle after the virus cleared, I have finally been given a definate answer that the pain is caused by the hypermobility of my joints, and that it would settle down when my joints harden up in 10-15 years. I was in so much shock at the 10-15 years bit that I just wanted to get out, so I didn't ask anything else, but from what you have all written, it sounds just like me! I am 21, but feel about 50. I am in my final year of a degree here in England, and don't really have anyone to talk to about how I feel, My Mum feels really guilty 'cos it's her side of the family I got this from. Then both her and my Dad feel guilty 'cos they have serious money problems at the moment, and to stay in university I am having to work three nights a week in a bar, which really hurts! On top of this my boyfriend, who should understand, finds it hard to deal with. On one hand he doesn't like to see my in pain but then on the other hand his mum has rheumatoid arthritis, but continues to cook and clean and generally slave for her husband and two grown up sons, because she has no other life, and a lot of the time doen't get that I am not either superwoman or that dull!. I am simply not willing to give up the things I enjoy and the possibility of a career, and refuse to feel guilty about asking for help with things like carrying shopping. I often get quite insecure because it is someimes hard to think of anything to say to both him and my friends that isn't whining when the only thing I can think about is the red hot pain in my hands feet and back! I don't feel like the fum loving young person I used to be, which again is hard for my boyfriend to deal with.
I better stop before I rant too much! Write back; It helps to know I'm not on my own, even if you are all in the US!

By Elle Elàn on Friday, January 12, 2001 - 11:27 am:

Be true to yourself! Only YOU know the pain you feel. Who are they too judge?
Somewhere on this site You should be able to find the English site for HMS and there you can find articles from -among others- dr.Graham,specialist in HMS.My advice :print some of these letters and the article of dr Graham about pain and hypermobility out and let your boyfriend read them.Maybe it'll make him understand better. It always seems very hard on most people to understand and accept someones pain if they don't know anything about it ( and I do suppose he never heard of it before) Maybe it helps-a little.
Do keep reading that and this site regularly.I learned an awfull lot about myself and HMS doing just that.I'm afraid that we-and I mean the hmspatients are for now the best specialists on the subject for the medical world -aside from some good doctors-doesn't really know that much about it yet.Good luck!

By Vicky in England on Sunday, January 21, 2001 - 06:48 am:

Just thought I'd keep you updated. I had a big blowout over the weekend with my boyfriend. Turns out he hadn't realised how much pain I was in and he wasn't going to bring it up 'cos he didn't want me to think that he saw me as a just a girl with a disability, but that if I want more looking after he will. Ah bless. Guess I have to stop expecting people to be mind readers! After all, cos we don't spend much time together; I live away at university, he has never seen me at my worst 'cos if he is coming to visit I completely rest for two days before, so that I can enjoy the weekend and then pay for it later. I think me throwing my hip out in front of him for the first time may have opened his eyes a little as well!
Thanks for the support everyone
Big (but gentle!) hugs
Vicky

By Rose on Sunday, October 14, 2001 - 03:57 pm:

hiya - this is the first time I have seen this site and it is brilliant to know that I have not been going mad I really do have something genuinely wrong with me. Reading all your postings has been a real boost tonight. Thank you. I was diagnosed with HMS last year and just told to get on with it (yes vicky I have a similar doctor it seems!)- it is only due to a fabulous trainer/physio at a gym I recently joined who is working out how excercise might be able to help and finding information and sites like this for me so I have better knowledge about what is going on. I have HMS fairly mildly, I was told, however it does not feel that mild to me although I realise compared to some of you it definately is - however, I still occasionally have to use a stick to walk and get good and bad patches. I just couldn't believe it when I read that someone had been called strange by someone else for acting the way they do with all the pain. The exact same thing happened to me tonight - an old friend of mine said you are acting very strange. I said I was in a lot of pain tonight and my thumbs are in spasm - she said - why don't you call me back when you are better? I have explained this condition so many times to her - what do I have to do to explain that it comes and goes and I never know which joints or where it will strike again. And its fairly constant - better is just when I am less tired and can mask the pain better. I suppose I need to show her this site! My second problem that may be solved by follwing the advice Vicky took, is that I am an actress in a theatre company and they do not understand why I am in pain some days and not others and in different places all the time. Often they leave me out of particular shows if they are casting on a day when I am bad so i end up trying to mask it and that makes me extremely tired. i shall show them the articles and hope that makes a difference! Fingers crossed. Oh and by the way vicky I am in England too!

By Phil on Monday, October 15, 2001 - 01:56 am:

Just an Excuse
Hi Rose
Glad you have found this site. I was undiagnosed for years. I have Ehlers-Danlos Syndrome, Type III, you will see it often on this site as EDSIII, and it is thought to be the same as HMS. You may find it very difficult to explain to friends about your pain, perhaps impossible. Do not worry too much, just try to imagine how difficult it must be for someone to understand our problem. A condition that cannot be viewed on X-ray, or MR scan, no simple tests that can prove that we have it, no possible explanation for our variable pain, no possibility that we can prove how severe the pain can be at times. I am like you, I am not as bad as others seem to be, and I feel so sad for them. Wish there was some way to help the really severe sufferers.
My advice to you Rose is learn as much as you can about your condition, seek an educated doctor that tries to understand HMS, and keep fighting all the way.
Regards, Phil

By Rose on Monday, October 15, 2001 - 04:29 am:

Thanks Phil - yeah you are right I am lucky not to have it so bad - I didn't realise that it could be - in fact I didn't realise it was something that other people have! Thanks for your advice you are right, it is bizarre! And in the past lots of doctors made me feel I was making it up until I came across a great rheumatologist who diagnosed but just said there is nothing you can do about it. I now think that there are lots of little things you can do to make it easier and understanding and hearing about others is definately one of them! It makes me feel much stronger to know that I am not alone - its easier to fight something when you know that someone out there understands exactly how weird it all is too - not that I would wish this on anyone! Anyway Thanks again - Rose

By Andrea on Sunday, November 18, 2001 - 06:41 pm:

Well, hello everybody! I started this conversation a year ago when my sister-in-law threw me out after declaring my joint problems were just an excuse. My husband, by the way, just stood there, next to his sister (not me!) and said nothing and did nothing. To this day, my sister-in-law has not apologised, and my mother-in-law still demands that she talks to me (no such luck for her, I'm afraid, as I have turned my back on the whole family). One year on, and I am no closer to making my bloody-minded and immature husband understand what it's like to live with HMS. I also suffer from fibromyalgia and that affects my digestion: all vegetables have to be cooked to death otherwise I cannot digest them. So my beloved husband makes leek soup (which should be cooked for at least an hour, it says in the recipe). But because he decided he could not be bothered to stir this thing occasionally for an hour he brought the soup to a boil, then switched off the gas and let it stand for an hour in an insulated pot! This is his idea of help!!! Needless to say I found out and could not eat the soup. And this sort of thing happens all the time...