How to inform group

What is the best way to inform a group that you belong to that you have PMR? I don't look sick, I can function for short periods you all know how it goes. We have a bazaar coming up and they want me to work the whole day. I keep telling them I don't know how I will be feeling for it will be time to drop my prednisone meds. I have been able to keep up with a sewing group I belong to but I can sit doing that job. Just feel like they don't believe me that I am sick. Thanks for any suggestions on how others have handled it.

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What kind of group is it JoanElaine? Do you have scope for speakers on topics? It is very relevant for people in our age group. Where are you?

Your question is a hard one, because try as they might people don't really understand because you look well unless the Pred has already done things to your face and body. They either think you should be spared everything and be counted out ( not good psychologically) or that you are trying to get out of doing your share. Especially as enthusiasm can perform small miracles in us. Good luck, get a pal on side.

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It is a church group that does a money raising project each year. They have a bake sale, serve lunch and have crafts for sale. I live in Nebraska. I was always the chair person for the bake sale but gave up that job for I knew I couldn't handle being on my feet all day. One might be able to make it for that day but then the next day I would be suffering. I just feel I don't explain it very well. I did just see a poster that reads: IMAGINE WAKING UP EVERY DAY NOT SURE IF YOU CAN GO TO A STORE, TAKE A SHOWER, EAT A MEAL. CHRONIC ILLNESS REQUIRES LEARNING THE BALANCE BETWEEN SURRENDERING AND FIGHTING. AND NO ONE EVEN KNOWS YOU ARE IN A BATTLE. I like this one.

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A DVD called 'You are not Alone' made by medics and patients for family, friends, carers and employers.

pmr-gca-northeast.org.uk/in... but as a small charity, it is £5 incl P&P.

Tried to insert pic, but cannot get it work.

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Hi,

I agree it's very difficult, but if you read through the following it might give you ideas of how to explain - the first article is written about another illness, but it's effects are similar to PMR

butyoudontlooksick.com/arti...

The second is my lighthearted "take" on the illness, and is aimed at those who have it, but you might find some snippets you can use

healthunlocked.com/pmrgcauk...

The only thing I would say, it don't get into too much detail (people lose interest), but try and get the salient points across particularly the debilitating fatigue you get - and clarify it is not just feeling tired - it's very different!

Good luck.

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Thanks for the articles. I'll use some of those ideas.

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Ho JoanElaine,

I had a similar situation.

I simply stated that this year, I will not be able to work whole day shifts, but will be happy to share shifts with someone else. Turns out, others felt the same, and we mixed it up so that no one had to be on their feet (duty) for long times .

By the way, if you had a heart condition, or some other common condition, do you think you would be having this concern?

PMR is an actual illness, with severe effects on our bodies. The only treatment known is prednisone, a medication that comes with its own set of issues. The fact that this illness is not well known in no way diminishes the impact it has on our lives. So when its all said, you have no cause to feel like a fraud when you state that you are unable to be a frontline worker this year (nor maybe for the next 3 or 4 years).

Give yourself the same consideration you would offer to your dear friend, if she had PMR.

Kind regards, Jerri

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Thanks for your kind words. I am one that doesn't like to say I'll do something and then not be able to show up. I'm hoping I can help for a couple hours setting up. I like the idea of sharing a job.

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Oh, sorry, I misunderstood...I thought you were afraid they would not believe you are sick.

My apologies, Jerri

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JoanElain,lknow just how you feel.I belong to a church and a couple of church groups.I do not attend church very often but manage the groups as they are a lot easier to take part in and being more informal l can sit down more or just leave if l am feeling tired. I also belong to the W l ,Although l have mentioned my Pmg, l do get asked to help out with things and it is very difficult to explain that l cannot stay on my feet too long.l see that you enjoy sewing,l find that helping out with creative things that they can use to raise funds helps me to feel useful,

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Thanks for your encouraging words. You know exactly how I feel. I am so lucky that I have been able to keep sewing each day. I think I would go crazy if that got taken away from me. I can do sewing for short periods and then rest. We have a group that sews for charity once a month. I do have a few things made for the craft show so at least I am helping out that way. Sometimes just feel that people don't really think you are sick. So glad that I have a doctor that is understanding and listens.

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Very difficult situation. It can be a nuisance looking well but feeling rough. I'm currently on long-term sickness and I've tried to make my manager understand how the condition affects me. She really hasn't got it yet and keeps asking me when I'm going to get better... Her emails say things like "continue feeling well". Errr, I think she's missing something somewhere... I went into work last week and someone said "oh you look so well!!" My colleague jumped to my defence and told her I was off sick.

I understand how difficult it is, especially as no one can see PMR. Your Church group has obviously always relied on you and are expecting the same level of commitment as usual. Be firm and think of yourself, otherwise you'll be paying for it the next day. We've all had to come to terms with making temporary unwelcome adjustments in our lives. Things will be different in the future and you'll be back at the helm again when PMR has moved on.

In the meantime enjoy your sewing group.

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Thanks so much. I agree we do have to make temporary unwelcome adjustments. I sure hope things will be different in the future. This group helps so much to know we are not alone.

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"I went into work last week and someone said "oh you look so well!!"

Tell 'em its the drugs...

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I'll have to remember that reply.

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Yes, I told them I was on performance enhancing drugs! 💪🏻😄

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My son in law,understands what we can and not do and suggested to say no.When they don't understand after you have been working all those years like I did ,You just have to say no. You need to pace and take care of Yourself.You are contributing with your crafts and what you can do.

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Thanks for the advise. Just say NO

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First, a big hug from one Nebraskan to another. (I'm in Omaha.). I agree with the others -- at this time you need to become more protective of your time and energy. If that means disappointing others that want to (and have) depend(ed) on you, so be it. Remember, you teach others how to treat you. If you buckle under their pressure, they'll get the message that they can Ignore your requests and won't take your illness seriously. Stand up for yourself and show them that you take it seriously. That action may be more informative than any words you say.

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Thanks for the advise from another Nebraskan.

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JoanElaine. Sometime ago, I read that someone , when told that they looked well, replied'it's not my face that's ill'.

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I've got to remember that reply.

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I like that! 😄

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When I wanted to tell my (adult) children I emailed them all - giving the link to the pmr/gcauk website. I just detailed how it was affecting me at the time, including the pain and getting knock out fatigue if I overdo it. I didn't give too much graphic detail - I saved that for the telephone or face to face discussions which followed after they had digested my email and the content of the website. Job done.

My advice is to tell the chairperson/secy how it is and don't allow yourself to be bulldozed into doing something with which you cannot cope at the moment. Be firm! Maybe you could offer to go along for an hour and stick price tags on things while sitting down - and make sure you have arranged someone reliable to collect you at a certain time so you don't get sucked in for longer than you wish to be. If it was me I'd do a serious body swerve on an event like this and use the PMR as a very valid excuse to bow out!

Good luck!

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Good advise. I think that is what I will do. Help the day before pricing and then I can leave. I'll offer a couple hours and then leave. So many good ideas on this site.

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If it were me... I would say I want to help as much as I can ... however my Dr says no and that I mustn't over do it so I will need a back up and shorter times... it just kills me not being able to give as much of myself as I have in the past but this disease I am battling just won't allow it... I know you all understand. Then if they ask ( they probably will) tell them about PMR... my friends that know have been very supportive when I have explained PMR to them... they have NEVER heard of it of course.... but they did see my moon face and bruising etc.... before it went away. Tell them how bad it can be and how rest is the biggest help... stress free rest none the less. Hope this helps but you do need to stand up for yourself. Best wishes to you.

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Thanks for the advise on how to inform them. Sounds good to say the doctor said.... One just knows if you work a whole day you will be in bed the next day or two.

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How do you get out of something you unwittingly agreed to (long story) without feeling you are really letting your friend down?

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I think it is tiring to keep explaining “PMR” all the time, plus, like you said, you look fine.I usually say “I have an auto immune problem that keeps me from doing everything that I would like to do...each day is different, so I will try to do what I can when the time comes.”. Seems people can remember to say you have an auto immune disease of some kind rather then trying to remember the initials of some unfamiliar ailment. And my friends know I had PMS (pre-menstrual syndrome😊)and now PMR...what is next!!

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Thanks for the suggestion to use the auto immune problem to explain. Maybe they will understand that better. I had a good laugh about the PMS and now PMR.

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And I just recommended this paper as a useful bit of reading:

healthunlocked.com/pmrgcauk...

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Thanks for the article.

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You sound like a very lovely, supportive person and your group is very lucky to have your help in whatever form that takes. I think what I've worked out about auto-immune disease and friends/family is that because lots of us look 'well', the only people who really understand the overwhelming exhaustion that comes with these conditions are others who have it too. Do what you can, and be as strong as you can be about saying no and explaining why. I wake up every day not knowing how I'm going to feel that day. I've tried to explain it to my husband..and even my gorgeous teenage boys. But...unless I'm flat out in bed...they don't really understand...and even then it's not really possible for them to take it on board. Just look after you, because if you do too much, you won't be able to help at all. Sending you a big cross Atlantic hug. 😊

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Thanks so much for the big Atlantic hug. I agree one never knows how you are going to feel each day. Hopefully more good days then bad.

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It is so true that we can look just the same as we did before we had Pmg,l do not think my family or friends have any idea how difficult it is to do as much as l used to,lam so much slower for a start,and even reaching down into a kitchen cupboard Is very painful.l even had to ask my husband to push a plug into a wall socket the other day,this certainly is a very frustrating illness. All the best to everyone,at least we all know what it is like .

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Hang in there. I hope it gets better for you. I seem to drop things all the time and hate to bend over to pick it up.

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Thanks Joan Elaine xx

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