Family doesnt understand the symptoms of my disease. Any ideas how to get them to understand?

I am frequently reffered to as lazy, or told that i just need to get some exercise. My family, after repeated attempts to help them understand my condition, does not get it! They cant see my illness so it is not real to them. I was diagnosed at 27 after a massive PE and 23 clots in my heart (at tricuspid valve) Now, after several open heart surgeries, having my right lung removed, and 3 miscarriages ( all between six and seven months) , and also having a greenfield filter "installed" I cant get them to understand why i just want to sleep or rest. I ever socialize outside of the home anymore....how do I make them understand?

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  • Hi there, firstly have you linked up with any other members from this site in your area? that may be a good starting point for support, and also swapping ideas on how to stay as fit as possible against the odds. Sorry that things are so difficult, and often as Christmas approaches, family tensions can increase. Wishing you all the best Mary FB x

  • My goodness, you poor thing! Have you sent them on here to read other questions blogs etc? it may be a starting point - or the HSF website - I am sure there will be other patient stories. I am a bit shocked at their lack of sympathy for you considering everything you have been through. Mary's idea is terrific, you should meet up with others (maybe proactive people) to see if there is anything you can do to improve your energy levels - for you! Socialising out of the house can be a fantastic boost for your morale but you need to be confident that it isn't going to completely wipe you out.

    The only thing I will say in your family's defence is that it is hard to know what to do for someone with an illness - I know I frustrate my family by insisting on doing everything myself (because I will not let this beat me - even to my detriment!). Are they trying to make life more enjoyable and just don't know how to help? Is there anything they can do to help?

    I hope something works - good luck

    Take care

    Tx

  • Hi EMT,

    I have posted the below a couple of times but it really does get your friend and family to understand let me know what you think

    hughes-syndrome.healthunloc...

    We all have had issues with getting people to understand if you want to talk we always here.

    Paddy

  • also have a look at this blog i put up it also has lots of information to help with understanding for friends and family

    hughes-syndrome.healthunloc...

    I really hope they help

    Paddy

  • Some family members don't want to understand because they can't accept it. If you don't accept something you won't try to understand it.

    Make sure they attend hospital and doctor appointments with you and actually go in with you to the appointment so they can hear what the doctor says.

    It soimds lile they are "in denial".

    Why don't you socialise outside the home? If your family don't `"get it", maybe you could meet people who do "get it".

    I spend quite a lot of time with a local meditation group and also a local voluntary group where a lot of the members have illnesses which limit their lifestyle, so they are more accepting.

    If your family see that your friends accept you they might take note.

  • Unfortuanely I have long since given up on the family understanding how I feel. I have tried till I am blue in the face. I had a stroke this year and was told when we had to move, "Mum you are not doing anything, you are going to my house while we pack everything"! What happened was I never saw anyone and packed up the whole house myself! Who are we spending Christmas with this year......we are on our own!! people have short memories and just don't want to be reminded or see the people (I was going to say they love) get ill.

    I find it far more supportive and less stressful to go to a support group and mix with people who understand. That may sound boring and depressing but that does not mean I am with them all the time. Forums like this are available for when you need to click in and out and support groups meet once a month in general and you sometimes make personal friends from those groups.

    Its sad that we can't rely on our families but sometimes that relationship is better not having to deal with the insecurities of illness.

  • Yes, I agree.

  • I downloaded all the very bad and the very good info and then made them read the very bad first it will wake them up good luck x

  • hi, i ordered a book all about the condition, by Kay Thackery, and got my husband to read it. he was truly shocked. from then on he has been fantastic, the odd day he has a bit of a moan but then feels guilty! i have even taken it to my work, so they can see them selves that im not pulling a fast one some times. It is very hard for people to understand and i think they feel a bit lost too. Stay strong you will find an answer x

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