Asking how to deal with people who don't understand my condition

Jonsysmum

I am a 75 year old woman and have been managing osteo arthritis since my fifties. I have it all over my body and manage it with diet and exercise as best I can. 18 months ago my back went and after attending A&E I was diagnosed with 8 bulging discs after an MRI scan. Since then attended MSK both physio and a 6 week course of back strengthening exercise. During this time I have had flare ups which I managed with pain relief and exercise. So far as every day living is concerned I have had to make adjustments which means my husband cleans the house and I don't lift or carry heavy loads. I often need help with getting dressed. Over the years I have had finger joint replacements my most recent being 6 weeks ago and so far so good. However what I find difficult is other people who don't understand why I have to be careful particularly with my back. I volunteer at my local theatre front of house and currently we have a very busy panto season. It is probably the thing that keeps me going as I get to meet all the lovely audience members of all ages. Part of the volunteering duties is clearing up rubbish and cleaning the auditorium after performances and the management and staff at the theatre are aware of my condition and understand that I am unable to do the cleaning etc so at the end of each performance I am in the foyer saying goodbye to audience members and thanking them for attending our theatre. Unfortunately the other volunteers don't understand and because my condition is unseen I get some snidey comments which are upsetting and I just don't know how to deal with them. Yesterday was the tip of the iceberg when a fellow volunteer picked up a piece of rubbish off the floor and put it in my hand as if to say this is what you should be doing. All I did was put it in a bin as I didn't know what to say. It doesn't help because I don't look my age am always smiley and I must look the picture of health to others but inside I just want to cry and it is really hard to put on a brave face. The theatre management and permanent staff are aware of my condition and say that they want me to continue volunteering ( I have been there for 7 years) as my people skills are very important and I have to say I just love meeting people and seeing them enjoy themselves. However yesterday really upset me and apart from just giving up and walking away I just don't know what to do or say to these other volunteers. I have a performance this afternoon and have been awake most of the night worrying about it. I would really appreciate any thoughts or advice on how to deal with this situation as apart from having to explain to them before every session which I would find embarrassing I just don't know what to do.

Trish9556

hi @Jonsysmum

I am sorry you are having to put up with this, OA is bad enough without being treated like this. How about having a word with your team leader who can discretely have a word with the offending volunteer? Alternatively you could just explain to them how hurtful their actions were and how much it upsets you at not being able to do everything everybody else can on a daily basis - not just picking up litter in the theatre. Another idea would be to put what you wrote in your post here on a note and give it to them.

There are some lovely badges around that say "not oall disabilities are visible" which you could wear - wont help for today but an idea. Just google it.

Unfortunately there are some horrible people out there who just don't and won't ever understand OA - I have had my share and that includes Doctors who have just told me to get used to it.

I hope you have a lovely time at the theatre today and try not to let people like that get the better of you - you are better than that.

Love n hugs

Trish

Jonsysmum

Thanks Trish you have made my day. Yes I will speak to the Duty Manager when I arrive who like me is also a volunteer and recently had hip replacement. I will also get one of those badges you suggested too.

Naomi33

Morning @Jonsysmum sorry to hear your concerns.

Totally agree with you about only seeing you/us as normal but unless they suffer will never understand our condition.

Definitely have a word with duty manager as a volunteer you are needed and valued and they should appreciate you and your condition more.

If you enjoy it and want to continue emphasise this to them to.

But do understand your frustration

Good luck 😘

creAte

@Jonsysmum @Trish9556 ...1st though/idea while reading original post was: a badge, so I smiled Trish9559 when I read your reply x

Badge that came to mind was different: 'People Skill' or equivalent as a role, for Jonsysmum's management value that skill in Jonsysmum.

1/volunteering is giving

2/it is not for a volunteer to act as a forceful person towards another volunteer (unless roles had clearly been pre-established by a system and all part of that system had accepted this sort of system)

3/do not allow others volunteers to spoil the pleasure of your volunteering

4/one is only responsible for its own action

5/the gift of clear boundaries and may many more years of you enjoying your volunteering at the treatre be preserved with grace x, justification free, just clear boundaries, example: I am not in the position of doing this or that, dot.

Gentle smile

Trish9556

I hope you got on OK on Sunday @Jonsysmum ?

trish

Moira

I can sympathise. With my arthritis I volunteered as a usher at "Dance East" in Ipswich for a number of years. It horrified me how people just ditched rubbish under their seats. Do they do that at home?

I also never understood why drinks are allowed in an auditorium - never used to. Surely people can manage an hour without a boozy drink! There were bins in the foyer too but audience members never use them. It makes me so cross that folk expect others, particularly with disabilities to clear up after them.

I can no longer do ushering because of the worsening state of my arthritis and we have moved away too. I do miss it though - but not the cleaning up after lazy audience members!

The Volunteer Manager should be alerted to your problems and be able to sort them out. That is their job. As my arthritis got worse I was excused the bending and picking and was on door saying good-bye to people.

Hope you get it sorted by speaking to the VM and start to enjoy yourself again.

Jonsysmum

Thanks Folks for your advice and kind concern as it has really helped. I spoke to the Duty Manager at my next volunteering session and he was so lovely and also upset on my behalf. He asked me if I would like him to have a word and I told him that it would really help. I also bought a badge which says "Be Kind Not All Disabilities are Visible" which I wear next to my Volunteer ID badge. So far I have volunteered at 4 more Panto performances and have had no problem from any of the volunteers apart from one grumpy woman who seems to think she is in charge but I just ignore her. Next week I have 5 to do and panto season ends at the weekend. I fully intend to carry on as long as I can and of course the theatre wants me to. Thanks again for all your comments and advice as it has really helped to know I am not alone. I wish you all the best and that we stay as well as we can and do what we can to make our lives as pleasurable and safe as possible. Happy New Year 2025!! XXX