How do you explain HMS to colleagues/friends/family??

[cracker]

I have some trouble too. when i on a cruch/ cruches i sometimes get 'whats wrong this time?' i been called a 'hyercondriac' and a ''nice'' member of my family said 'it just a label' i try not to let it get me down but it is hard sometimes.

[carolyn]

I gave my mum some leaflets and booklets to read too. She had a scan through some of the posts on here too and I think she is understanding more.

[Kattykins]

Oh joy!!!
I just have to share this!

My mother has always been pretty scathing about my problems. Most of my life I have been "attention seeking"!

She has Rheumatoid Arthritis and went to see her rheumatologist and actually got to see the consultant, a certain Dr H in Manchester!! Yep THE Dr H! And guess what..............
she has HMS too!

Rofl!! I got it off her!!

It sounds as if her mother had it too! My mum is 76 so she must be pretty bendy! Lol!

[trekster]

I've adapted the letter the HMSA has on the website (cheers guys) and im thinking of sending it to my sis.

"Dear Sis

I am sending this letter to help you understand my feelings as I deal with HMS/HEDS and the changes it brings to my life. I am scared. I don't know what the future holds for me. How long will I need my wheelchair, will the physical rehabilitation at Stanmore work for me or will this be the rest of my life. If you find me being snappy, please don't think I am upset with you I am in severe pain but asking when I last took painkillers would help.

HMS/HEDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is the disease I am angry with, not you.

Please don't assume you know what is best for me. HMS/HEDS has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to hang out with everyone else, but it hurts when you exclude me.

Don't tell me how other have cured their joint problems by drinking vinegar or any other supposed remedy. I have done much research and I keep up on current treatment options. If there is a possible treatment out there, I will know about it.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind.

I want you to know that the pain from HMS/HEDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Finally, please remember that I am the same person I was before I was diagnosed with this; HMS/HEDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

love from"

[cracker]

my mum & dad are ok with my HMS they acepted it but it the rest of my family that dont understand

[Catkin10]

I know this topic probably exists somewhere already but I just wanted to open it up again to see what other people had to say.

Mod edit - topic merged with existing - PLEASE USE THE SEARCH FACILITY BEFORE STARTING A NEW THREAD. Site Admin

We all very well know how complex HMS is as a condition, but do others find it hard to get their family memebers to get to grips with it? I've been trying relentlessly to get my Mum and Dad to understand how much of a struggle it is for me now, physically and mentally, but they just don't seem to get it. This problem is probably compounded by the fact that my older sister has a personality disorder, which she has suffered from for a number of years before my HMS became apparent. My mum worries about her constantly, and rightly so, because she has gotten into some very grave situations in the past. It just seems that her condition seems that bit easier to grasp than mine, and I don't understand why that is. I know she probably worries about me too, but I wish she would talk to me more about it. Everytime I try to open up to her, she shuts me out and changes the subject to something else, or even worse, tries to relate it to my sister's condition which I personally find unfair, because we are experiencing completely different conditions.

The other main thing that I try to tell them about is how upset I feel about the fact I can no longer do the level of sporting ability that I used to be able to. I took part in competitive gymnsatics for almost 10 years, but HMS took that away from me and I'm scared about what else it'll take away from me ability-wise. Not being able to do a backflip is one thing, but not being able to lift a full tea-cup properly is completely different. At the end of the day, I'm 16, I'm still a kid, and I'm a bit scared of this, but they can't seem to understand me.

I hope I don't sound like some angsty teenager, I just wanted to know if any of you have any simple ways of explaining this to family members (such as the spoon theory) or have experienced similar things?

[madmum]

Hi Catkin. Firstly let me start by saying you are not an angst teen. You sound a very grown up person. It may be with your mum she is struggling to deal with your sister and having to face more problems is scaring her,if you do not speak then maybe it is not happening can be a way of coping. The hmsa do some excellent literature about young people and hms,why not get one and leave it where she can see it. Or maybe consider putting your feelings in writing to mum in a personal way,she can then read it and come to you to chat(invite her to do so). With the right support things do not have to get too bad,physio is important to strengthen joints and as for pain there are things that can control it. If you have to end up with splints it is not the end of the world,I use one on my right wrist but I am still me. My son has knee support and often needs to use a crutch. He uses his laptop at school. He is 12 and just been told he is a predicted A student. He is bright and tries hard,he is in a marching band despite a slipping kneecap and hand problems. Keep strong and remember we are all here to support you where we can. If it would help why not ask mum to look at the hmsa site with you. Keep being the understanding person you are to your sister. Sending hugs to you and the family.

[Chloe♥]

Abdominal pooling. Well I never.
This could explain a lot.
Thanks for mentioning it.

[cracker]

i find it hard to explaine to my aunts & cousions they two of my ''cousins'' dont belive i'm ill & that im faking it like talking to a brick wall with them i would show them the letter but they mite rip it up & throw it in my face
my aunts are ok they slowly starting to accept i got HMS
but they still dont understand & they (my aunts & cousins ) dont think i'm ill enough for dla that makes me feel angry if feel like telling them to
i feel like they dont belive me.

but me mum & dad cant say anything incase it causes a family row. what do i do?


ps if i put this in wrong thread please can u put it in the right one please mods

[madmum]

Might sound obvious but is it really any of their business if you get dla or not? You know how hms affects you and if you are entitled to dla that is what matters. If they are ignorant let them get on with it. As long as your folks understand then that means you have their support. You have our support here.

[cracker]

thanks madmum x

[madmum]

No problem cracker,You have been there for many of us.

[cracker]

cool thanks madmum i like helping people

[bendyneck]

I had a revelation whilst trying to explain to my husband how HMS works. I said:

I am like a tent where the frame is the bones, the fabric is the muscles and the guy ropes are the collagen. You can put up a tent and make it look and function perfectly adequately without using the guy ropes. However as soon as stress is applied, perhaps in the form of wind, if the guy ropes are too stretchy or loose, the whole thing will start to wobble. The more severe the stress, or the longer it is applied, the more the rest of the structure is compromised. The fabric could tear or the frame could bend, break, or the poles could pop out of the sockets.

bendyneck

[trekster]

My analogy is a puppet with loose strings. Met Simon Western today and his attitude is to stick 2 fingers up to any bigots.
Decided that I will just have to say to them 'this is me, HMS and other disabilities, accept me for who I am and avoid the
disablist comments'.