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Family not understanding your condition, what should I do?

Posted , 12 users are following.

willowsamantha
willowsamantha

So I got diagnosed with M.E last year and I have found it very difficult to keep up with my daily schedule. Working 8hrs a day is extremely exhausting. 

My father has never been very understanding with being ill or needing time off (I work for him). I've recently started a 7 week MEMP/NICE session with others that have M.E its three hours and extremely draining. 

It was suggested by both the Occupational Therapist and a Physcologist that I have the day as a half week break, as it can be extremely exhausting. 

My father hates that I have been suggested this, it's taken alot for him to even allow me to attend these sessions.

He is very much a work hard no matter how ill you are.

He doesn't understand whatsoever what I have to deal with day to day having M.E.

There is a bring your family session in 3 weeks but I am to scared to ask him to come incase he mocks the others or makes jokes about this serious illness.

What should I do?

0 likes, 33 replies

33 Replies

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  • sandy53965
    sandy53965 willowsamantha

    Posted

    Hi Samantha, so sorry you're having this problem.  I know how hard it is when family members don't understand, and how they seem to think that we are over reacting.  It's like they just can't even begin to imagine what we're going through.  My husband who has had ME/CFS for almost 30 years (along with Fibromyalgia) used to push himself so hard, that he actually would fall down onto the floor after a while (just from trying to get out of the bed and to the bathroom).  He pushed himself so hard and tried so hard to get better, only to make things much worse for himself and his health, and that is the main reason that he is still sick and totally disabled today (27 years later)!  If he had known not to push himself so hard, he may have been able to recover enough to go back to work some day, but because we didn't know, and we fell into the trap of trying to please everyone, he is still suffering today and is unable to work or socialize or barely even leave the house.  It's been a very sad life for him and me both due to his severe health problems and inability to do hardly anything.  I would suggest trying to write your father a letter.  This way, you can think long and hard about what you want to say without getting nervous or messing up, and you can carefully explain to him in the letter what is actually happening to you, and how it affects you, and how pushing yourself will only make you worse and cause the illness to get worse and last much longer.  You can explain to him that there are people with this illness who felt the way he does, and so they pushed themselves, and have been suffering for over 25 years as a result, and have been homebound and even bedbound because of it. 
    • willowsamantha
      willowsamantha sandy53965

      Posted

      Thank you for understanding.

      It is extremely hard, I'm only 20 myself and I'm finding it hard to adapt having this condition. But he doesn't help whatsoever by questioning every move that I make. 

      I tend to sleep most weekends all weekend because I'm catching up from such a busy week, and he goes on about being lazy, or having no social life. Is it wrong for me to partially blame that on him?

      I've been given handouts for him to read, as my OT is aware of how he can be, but he pushes them to the side or reads half a page and says "oh".

      I couldn't even imagine being at that stage, I am so sorry for you and your husband having to go through all of this. 

      All I am doing is pushing myself more and more, to the point where I am collapsing, and falling asleep in situations where I shouldn't have been put in, in the first place.

      I don't want to give up work, as I don't feel I am that bad, but If he keeps on the way he is then I will be.

      But on the other hand he is my world, he has given absolutely everything to me, he's always given me what I needed, put food on my plate, been supportive when I'm upset, but I feel our relationship is crumbling (his new mrs is not a fan of me)

      I don't see my other half of the family, so all I really have is my dads half, his parents are so supportive of me. So I dont understand where he has got this ignorant, selfish trait from.

      I might try a letter, as in person I think I'd just break down. 

      Thank you for sharing with me and being open, I hope that you and your husband are well.

    • sandy53965
      sandy53965 willowsamantha

      Posted

      I think it is a great idea to write him a letter.  That way, you won't be interrupted, or distracted by his insensitive comments, and you will have all the time you need to think about what to say!  You can write down certain thoughts as they come to you, and just work on it a little bit each day or whenever you're able to.  Writing has always been my best way of communicating certain things with people, because otherwise I get distracted or confused when they interrupt me or argue with me. 

      No, I don't think it's wrong for you to partially blame this on him when he talks about being lazy or having no social life, but you don't have to necessarily tell him that.  He just doesn't have any comprehension of what you're going through, and since he's always been healthy enough to fight through certain things, he assumes everyone else can do it too.  But it isn't true, especially when someone has this particular illness we're talking about.

      Does he ever see you when you're struggling?  I would have had a hard time understanding my husband if I hadn't seen him struggling so hard to get up out of bed, and didn't have to help him to the bathroom so many times (in order to keep him from falling).  And there were times when I had been asleep, and he'd try to get up, and I'd wake up because he suddenly collapsed onto the floor from extreme weakness and inability to walk on his own!  That happened to him MANY times, because he had pushed himself beyond his limits, and had paid a terrible price for doing so.

      You could explain stories like this to him in the letter.  You could start out by thanking him for all he has done for you in your life, and mention some of the things he's done for you that you really appreciate, by saying things like "Dad, I am so thankful that you have been there for me etc. etc."  Name a few good things.  And then share with him that lately, his remarks toward you have been very painful for you and very hurtful, and that you need him to try to be more understanding, and realize that this is a serious illness you are battling with.  Explain to him that people with this illness are NOT lazy at all, but that their systems are being overtaxed with everything they do, and that these people fight as hard as they can, but then their body gives out, and they involuntarily collapse from overextending themselves and trying too hard to please people like their boss, their parents, or even their friends because they want you to go out an socialize, but the sick person is too exhausted to do anything, and that even getting to the bathroom is a problem.  Give him a few examples of how you feel when you start doing certain things.  Describe some of the symptoms - like dizziness, nausea, feeling like you are carrying heavy weights all the time, pain in the body etc.  Having this illness often feels like you have the flu.  Tell him, tell him, tell him!!!  But do in on paper, so he will be sure to see every word.  And don't forget to tell him that you love him, but that you need him to love you and be more understanding, and to stop hurting you with his remarks and making you feel bad for being sick!  Good luck to you, and feel free to keep writing to me for ideas or help.    Sincerely, Sandy

    • willowsamantha
      willowsamantha sandy53965

      Posted

      I started writing a letter yesterday, I haven't got very far but none the less, I have started!

      I just need to be careful what I put and when I give it to him as were all going to Thailand for my 21st, and I don't want to go at each others throats.

      So after his little b**** fit yesterday he's being overly nice today, he doesn't understand that he can't be like this, one day he's turned into the devil and the next trying to be all friendly again.. until next time!!

      He has seen me struggling, only at work though (I try not too see him on weekends as I have enough of him during the week) I am at my worst at weekends though. So maybe that's an idea to get him to see me when I'm bedridden for the weekend.

      When I describe my symptoms his reply is usually, "im tired too, we all get headaches, most people get brain fog, everyone has anxiety at some point, we all get colds", he's making it out like i'm just being silly and everyone goes through this.

      Oh gosh yes, I don't remember a time when I didn't have a cold or a cough, it's a permanent residence in my body now.

      I do love him, very much.. I wouldn't have this life I have now without him, everything I do have is because of him, but I think he knows that, so he holds it over me.

      You are helping, it's nice being able to talk to someone that understands, my friends are very good with me but it's difficult for them to understand because they don't see me at my worst or feel what I do.

    • willowsamantha
      willowsamantha

      Posted

      Hi Sandy, 

      Just to update you, I have no finished all of my sessions, and will have a follow up in three months time.

      I have felt so much better recently, deffo improved my symptoms and how i go about day to day,

      My father ended up coming to the family session, mind you he had a disagreement with one of the other ladies, not to his fault though, he was asking genuine questions, He has improved his understanding and supportive-ness so well recently, he's helping out more, 

      So thank you for all of your advice!

    • karoline_48993
      karoline_48993 willowsamantha

      Posted

      You lucky your dad is supportive and is even nice to you. My dad has never been supportive and writing him a letter would not help. He is a very cold unaffectionate person and if you not well he will just say it is your ownfault for not looking after your health.
    • sandy53965
      sandy53965 willowsamantha

      Posted

      Hi Samantha!  For some reason I didn't get your message until today.  That is so great that your father has improved his understanding of the illness and is being more supportive, and is helping out more.  That'a so wonderful, and I'm so glad to hear it, and to hear that you are feeling much better recently.  Woo hoo!!

       

    • willowsamantha
      willowsamantha karoline_48993

      Posted

      Hi Karoline, my dad used to very much be like that. It took me almost walking out of his life for him to buck up his ideas. Don't take this badly, but maybe he isn't worth considering anymore, maybe it's better to cut ties with him for a while? walk away, show him you don't need him.. sometimes that's what it takes for someone to get the kick up the a** they need.. If you need anyone to talk to i'm always on the other end of an email x
  • russ151
    russ151 willowsamantha

    Posted

    I'm sorry to hear the problems you are having with your family I have to warn you I made this condition much worse I am now unable to work through pushing myself my if you can get one of your doctors how serious this illness is .Peoples perception of this illness is terrible it really is its bad enough having to live with it day in day out please try and take it easy if you can
    • willowsamantha
      willowsamantha russ151

      Posted

      I wouldn't know what to do with myself if I couldn't work, I get bored if I'm stuck at home, but then I suppose I haven't had much time off since having this condition. 

      I have tried to compramise but clearly it doesn't work.

      Oh gosh, it is a terrible illness, it effects every aspect of my/our lives! 

      I will try, have been taught a couple of relaxation/restorative methods today, will try when I get home.

      Thank you for your input and I wish you well

  • dawn97
    dawn97 willowsamantha

    Posted

    Hi there first let me say how sad I feel for you it's so evident that you are coming to the end of you're tether !!! I went on a similar course as you but for fibromyalgia ( so similar to me & dr has said he thinks I have both !) 

    the family day on the course was amazing it taught my husband so much & if I'm honest it taught me how to see things from others point of view , please try to get dad to come along he will benefit from talking to others who suffer the same as you & it will help him come to terms with your illness & that you are truly suffering ( not just trying to slop of work !) the lectures will be able to get him understanding m.e. It was 10 yrs ago I went on that course & I'm still in touch with two people I met we go out for lunch once a month & have even he a long weekend away for the last 3yrs ! It's kept us sane & our partners can talk to each other about the struggles they have with us !!!  It's so hard for you working for dad ( I own a hair salon that my sister in law now runs for me !) working with family is hard any other staff member dad would understand he wouldn't stop them shortening their working week but family must suffer on , try & stand your ground get advise from your course on how to make dad understand !! 

    I wish you every success & please remember you have to make changes to be able to go on with this illness , listen to your body & pace yourself it's no good crashing & burning you need to keep something in the tank to get through the day , good luck to you x

    • willowsamantha
      willowsamantha dawn97

      Posted

      I'm literally so thankful you guys have all commented!

      I am deffo coming to the end of my tether, I have to be careful how I act or behave as well, as I'm in work with him so I need to keep it professional, but I can't help give him the cold shoulder!

      Oh really? that's brilliant though, I am so glad it helped you! 

      I am so worried he'll be rude, he can be extremely ignorant at times. I don't want the lovely ladies in my group to think anything less of me if he behaves like that. But I do see what you mean, and it'll be him embarrassing himself! 

      He doesn't know the boundaries between daughter and employee, we've argued so much about it before. 

      You are so right, I said exactly that to him, if it was one of the others he'd have to say yes, and he does.. he treats me like doormat because he knows he can. 

      Aww thats so nice, I'm glad that you have gained friends out of it, unfortunatly I am a lot younger than most in my group but they are all so lovely, and I'm already learning from them.

      I am trying, I'm just adapting to the limitations of my body. Thank you so much for your advice and encouragement. I wish you the best back xx

  • olivetree
    olivetree willowsamantha

    Posted

    Sorry to hear of the problems you're having with the illness and with your dad.  First of all please don't push yourself too hard - I did - thinking if I can just get through one day at a time and then catch up by crashing out at weekends. Unfortunately, like many others it was to my detriment. Eventually i just couldn't keep up, my illness got worse and I was unable to carry on. However, I have managed so far to hang on to my job by just doing a few hours one day a week thanks to my very understanding employer, my Doctor & O.T.  I know it must be difficult with your dad being your employer as well but ME is covered by the disability act and your employer is reqired by law to make reasonable adjustments to accommodate your disabilities. I would suggest you speak to your doctor and ask for a 'fit note' reccomending reduced hours. Think about what work you could reasonably manage at the moment, you can always increase this over time.

    Good luck.

     

    • willowsamantha
      willowsamantha olivetree

      Posted

      I suppose there is always going to be someone that doesn't understand, it's just a pain when it's the main person you depend on.

      I'm trying not to push myself, but with work it's something that I cant change at the moment, he just wont compramise with me.

      So If I end up at my worst, then it'll be him feeling guilty..

      I'm sorry that you have gone through this sad it's such a horrible illness! Wow, that is great though! You don't come across many employers that are fully supportive like that. 

      I will suggest that! Just curious, because my doctor referred me to my O.T does that mean I'm in her care now and not my g.p? I will ask my O.T next week

    • olivetree
      olivetree willowsamantha

      Posted

      I think it means you are under the care of both. OT to help & advise on self management but GP for general care still. OT's cannot sign you off work though, that would require your doctor's input. My OT did write to my employer explaining how the condition affects me and what they can do to help - regular rests etc but doctor managed my sick leave and reduced hours with fit notes.

      Not sure how it is for you but my OT and GP have my consent to share info regarding ME.

      Hope this helps.

    • willowsamantha
      willowsamantha olivetree

      Posted

      That helps a lot thank you.

      I will speak to my doctor next week, so with regarding my wednesday sessions my doctor can write a note to my employer (dad) requesting reduced hours. I'd only need the Wednesday to recooperate. 

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