Sticky Blood-Hughes Syndrome Support
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how to be taken seriously by your relatives

I come from a large family, but don't see them very often as most live in Scotland and I live in Surrey. And when we do fly up for a short visit I make a big effort to be sociable so probably giving the impression all is ok. What they don't see is me being out for the count for a week afterwards!

One sister is sympathetic (she has polymyalgia) and I think my brother is coming round to realisation after we had words because I'm not going up for Christmas to do Christmas dinner for my 90yr old parents. But my other sister won't take it on board that I am not well. I think she had ME 20yrs ago and now insists she too has polymalgia, but she has a very demanding academic career travelling all over the place, whereas I am fighting the urge to stay in bed all day.

She and her husband have tickets for the olympics and want to stay with us for three nights, but I have e-mailed to say I can't say yes until nearer the time . But now she has replied that she will need to know soon otherwise she won't be able to get affordable accommodation. My husband has said that in that case I will have to say no, but I know it won't go down at all well, with her and probably other family members.

How do you say no to people without them thinking you are being unreasonable?


6 Replies

Hi there, sometimes relatives and friends do not understand, especially if they have not experienced what you have put up with. Do they require very special treatment to stay in the house, or would it be just a base? I have a lot of visitors and friends - if i did not do so, I could become isolated

. However my friends know that although I do cook up a storm and put on all sorts of things, they still insist on bringing some meals, and go out quite a bit, and when I am really poorly I am not allowed to make up beds! However if somebody wanted to come and stay with me who just made me feel tired due to their demands and lack of imagination... they would not be encouraged to stay any how. Most times people stay with me, it turns into a holiday for me as well as for them. I can dance on the table some of time... but episodes of more energy or for that matter less can not be predicted. Understanding that people do not understand is half the battle. Could your partner gently set boundaries for your sister... and educate her around your tiredness, it sounds like you are fed up with trying to put your point across.and feel constantly judged by her, not a nice feeling!

When people stay with us, there are always a number of possible options for entertainment... we are lucky as lots of people in the house play instruments, but beyond that, listening to music, also a variety of films to watch... that I save for the last night of a week-end when everybody else is tired - and I always make at least one or two meals in advance. I try to see what is positive about having people to stay, relatives are always more demanding, I think than friends! Mary F x

The Best of luck, Mx


here here!!


Right first -get rid of any guilt -what she is after is free accomodation you will be doing her a favour....remember she isn't coming to see you!

Secondly just be completely honest - say that if she wants to come she might have to make up her own beds, cook for herself and entertain herself... and the choice is hers - you can't guarantee to be well enough to provide a hotel service - especially not one with free entertainment thrown in...

My sister comes to visit us (we live 300 miles away from the rest of my family) she is vegetarian and I think i have enough to do cooking for my children - if we are eating something vegetarian fine - otherwise she has to cater for herself...including shopping if I don't have anything she wants to eat...if my mother comes she always helps and does some of the cooking for all of us...

If my partner's family come (who I don't know well and we don't see very often) - I will make more effort - but even then we will take them out to eat or they cook for themselves...

In my view if someone comes to visit they are coming to spend time with you - not for a free holiday - and it should be enjoyable for all parties...


I still have issues with my boyfriend of 5 years. He still complains I sleep all the time and whenever I complain of a pain here or problem there he "jokes" about the ailment which makes me feel like he thinks I'm a hypochondriac. I do need to sit him down to talk about it, because it does hurt my feelings.


Hi there, I have had this with friends over the can be very hurtful, however what it has done, has pruned my friendships circles, which are fairly wide, down to those who are intelligent enough to see what has happened to me - that I still try 100 percent to have imput into all areas of normal life, including having to teach my youngest at home, whilst ill myself, when they encountered serious health problems.

I have been left with fun, resourceful and caring friends and it has left openings for new ones. My husband does tease and joke about my many ailments... but I kind of like that, to have some humour around what would otherwise be 24/7complete doom and gloom otherwise.

. However I am an awful tease myself to him. Happy Christmas - I must go and get myself ready for some light husband and wife christmas bickering! I once attended a party and a few people pulled up chairs as they thought we were the booked act! MF x


My hubby helped me to pen an e-mail to my sister (he thought I might say something I would possibly later regret!!!) Anyhow I told her that if she wanted to be sure of accommodation then she had better make other arrangements and as far as I know is now looking for a hotel.

It is an upheaval having people to stay over, so we don't very often, although there is always room for my two lads. There is a difference between someone coming to visit because they genuinely want to see you as opposed to free hotel! My brother in law hasn't set foot in our house for 21yrs - he doesn't like the 'English' and wants independence for Scotland!

I am very lucky to have a supportive husband of nearly 32yrs and two wonderful friends, which makes up for everyone who thinks I am swinging the lead.



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