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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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  • Guest
    Guest willowsamantha

    Posted

    Hi, your dad sound very similar in opinion to a few people I have worked for, as a PA (previously of 20 years fulltime but given up work for the last 3 years) I would hear a lot of comments from bosses about other members of staff and would always talk about if people were off ill with anything less than full blown flu then they were considered weak/lazy/stupid/not worth - take your pick.  Unfortunately I spent my teens and 20's actually heeding this advice, possibly contributing to why I got so bad, but who knows perhaps it would have happened anyway.

    The trouble with people who think like your dad is that nothing has ever stood in their way.  I'm sure, as you say yourself, he is very hard working and as far as he is concerned hard work is what got him where he is today - no luck of circumstances thrown in at all.  He is partially right of course and very admirable that he has such a strong work ethic.  I am sure he has had his problems that he has had to overcome in life like everyone has, but the trouble with this illness is, it is very much like flu in that it stops you in your tracks physically, no one can just push through this and be ok, it's not possible.  I did that for 20 years and it got me nowhere - ive always paid my own way (and sometimes even helped others get where they want to be) so losing my income is a shock to the system. I'm lucky I have a great partner now but I hate not having my own money but ive had to get used to it.  I was similar at your age in that I would sleep through a lot of my weekends.  Yes it has a terrible effect on your social life but there's not a lot you can do about that, just have to take it as it comes and enjoy good days if/when you get them.  ME/CFS is known to be (for some) relapsing and remitting so there is no reason for him to judge you when you are able to be more sociable, letting your social life slide because you physically can't keep up is one thing, but don't make the mistake of completely letting it slide because you feel guilty that you if you can socialise for once you could have done more work, there has to be a balance (sounds like your dad already appreciates that which is good).

    I would definitely take him along to the group, firstly he is your main support by the sounds of it so you need him there for yourself, that is the most important thing.  It's kind of you to worry about others, but this will not make things better for you and that has to be your first concern right now.

    As for being embarrassed by any comments he makes, they are exactly that "his" comments not yours, try to re-train your thoughts to not be embarrassed by his actions, keep reminding yourself that you are not responsible for what comes out of his mouth and your never know you might end up being surpised at how well other people cope with him if he does play up.  No-one worth your time will hold his comments against you personally.  

    I think my dad used to look at me the same way, he had wanted a son and got stuck with me and my sister instead, in my first decade of having this illness I think, particularly being a daughter, he just saw himself as hardworking and strong and coping and me as being a bit weak and feeble.

    Now i'm older and he wants to spend more time with me, my illness is now effecting that time we could spend together if I was up to going out and about more, so now I get complaints of him being bored and hinting that he'd like to come round for dinner more often, he is finally realising just how much this effects my life because its become an inconvenience to his life (a bit harsh maybe but thats how it feels) suddenly he is trying to come up with ways he can help "fix" me, very frustrating when he quotes an outdated piece of advice at me because he is so behind on all that has happened with research in the last few years. 

    Now if my dad says anything I always remind him that if he is so bothered or so bored he could always look into helping raise awareness and/or funds for ME, that usually shuts him up and changes the subject.  But seriously though, if your dad is the "doer" in life that he sounds like it might be worth suggesting the same thing to him? It will either shut him up or get him involved, either one would be a result in my book.

    Men (generally speaking, not all) like to fix things and when they can't fix something - especially for someone so close to them - they don't know what to do, possibly why it seems as if he acts out, sometimes its easier pretend its not happening than to admit you just can't fix it!  

    I say definitely take your dad to the meeting, afterall I strongly agree with the saying that it's better to regret doing something than to always wander what if, this can be your first exercise in putting yourself first and not worrying about what others think smile 

    • willowsamantha
      willowsamantha Guest

      Posted

      Oh wow, this has taken me a while to read!

      Thanks for your input and advice though.

      That is exactly what he is like, if I'm not on the floor in agony or unconcious. 

      Your completely right there, he has never let anything get in his way. He's had both hips replaced and needing his knees done, he walks up 4 flights of stairs numerous times a day to get to our office. I admire him and how hard working he is, every penny he has earnt is because of his hard work and his business. But, just because he's like that doesn't mean I should be. I know they are completely different illnesses/joint problems.

      Ah I'm the first born on my dads side and youngest on my mums side. But were all girls, so I feel your pain on that one. My dad always wanted a boy.

      That is lovely of him, trying to prove himself, but we cant be fixed, we can only manage it. 

      Oh god, if I said that to my dad he'd laugh at me, he is well off but again that is because of all of his hard work.. but man is he stingy! But I will suggest that to him, and I will let you know what the outcome is.

      I know what you mean, he has always been the one to fix all of my problems and I suppose this is something he cant fix, or pay to get rid. 

      I will take him to the meeting! You have persuaded me haha. Thankyou for your advice and time writing all this to me. Muchly appreciated. 

    • Guest
      Guest willowsamantha

      Posted

      No problem at all, it helps us all at the end of the day the more people that believe us, so convincing one relative here and one there is always worth the effort.

      It might be worth getting him to look at the facebook page of John Caudwell.  He is a wealthy, well known, hard working man who is not only suffering himself but most of his family too.  It's in relation to Lymes disease and its co-infections but he is slowly coming to believe that this can cause all types of autoimmune illnesses and is currently using his time and resources to hopefully prove this and get more help through NHS for people, as apparently currently there tests are unreliable.  It's certainly worth keeping an eye on what happens. 

      Don't worry if you don't reply again, I won't think you rude, I know how tiring it can be smile

       

  • jackie00198
    jackie00198 willowsamantha

    Posted

    Wow! That's really sad that your father has this attitude toward this very serious illness. Would he be willing to read an article or watch a documentary about ME/CFS? A very well-known author, Laura Hillenbrand, wrote a very moving article, "A Sudden Illness," for the New Yorker about what it was like to get this illness. You can read this article online. (She wrote the books "Seabiscuit" and "Unbroken," which were made into movies.) For shorter first-person stories, go to the "Solve ME/CFS Initiative" website, and then go to their "Human Voices" series.  Finally, a new documentary has just come out on this illness, "Forgotten Plague" (not to be confused with THE Forgotten Plague, which is about tuberculosis). It can be viewed on iTunes, Google Play, and Amazon for a small fee.
    • willowsamantha
      willowsamantha jackie00198

      Posted

      Oh I have tried getting him to read articles, I've shoved many onto his desk, infront of him.. but he says "when I have time", I hope him going to my group session will open his eyes, my O.T said she'll pull him to one side and speak to him aswell (hopefully he wont feel singled out).

      I will search for that documentary later, thankyou for letting me know. 

  • Bunnyhugger
    Bunnyhugger willowsamantha

    Posted

    I tell people, imagine you have a very bad hangover and got no sleep last night and still have to go to work.  Now imagine having 5 pound weights strapped to your legs.  Now imagine knowing that if you make to the end of the day at all you will not be able to sleep.  You are going to feel like this each and every day for the rest of your life.  Still want to push through it?

      I also tell them I have friends in chemo that have more energy than I do.  Why is it that no one expects them to work and they expect me to?  Does he expect someone with ALS to work?  I've said to my husband- get it through your head once and for all I am very very sick.  It is not in my head!  Here is some literature to read about CFS .  Now get off my back once and for all!

    • willowsamantha
      willowsamantha Bunnyhugger

      Posted

      I like your honesty! That is exactly what it feels like, 

      Even some of my friends say to me "of course you can work, you can move and think cant you", I will work and I'll continue too because I need to pay bills etc, but its the fact that even after drilling into their heads how I feel day in and day out that they can still put me down and make me feel so belittled. Of course their are worse of than me, I am completely new to M.E and I'm doing all I can to manage it.

      I think im going to have to stop being so soft and do what you do, tell them how it is, if they dont like it nor support me then they can get gone.

    • sandy53965
      sandy53965 willowsamantha

      Posted

      Bunnyhugger made some great points, like about the hangover, and the extra weights etc.  Also you can mention how it feels like you're battling the flu or mononucleosis each day.  Almost all of us have lost friends because of this illness because the people can't imagine it being that bad since they've never experienced it.  Unfortunately, we sometimes have to force ourselves not to care what some of them think.  And if they aren't kind enough to try to understand and have some compassion or empathy toward you, they really aren't worth having as friends.  I know how hard it is, and sorry you're going through this.  It seems like some people just don't have the ability to be understanding or compassionate toward others.  But if they ever get sick with it, they'll be completely surprised and suddenly have more understanding.  Also remember that more this stresses you out, the worse the illness and symptoms become.  It's very important to avoid and prevent stressful situations, because they will contribute to the severity and longevity of the illness.  Take care of yourself, even if it means losing some relationships. 
    • willowsamantha
      willowsamantha sandy53965

      Posted

      I cant begin to explain how much you guys have helped, I know they are words but these words mean a lot and how you've taken your own time to write to me. 

      I know I'm young so I have more of a chance to over come this and manage this, and im hopeful that I will get to a good place. It is the steps I need to take to get there that worries me tbh. 

      Don't you find it frustrating having to explain to people over and over that its not just an excuse to be lazy? and how difficult it is to get through a day everyday?

      I'm sorry you've gone through this too. 

      My O.T has warned me about stressful situations, and how they make symptoms worse. I am learning different methods of relaxation so they will come in handy haha. I've said to my best friend (flat mate) many times that me being tired is 100x worse than her version of tired, and she says that it's not exactly worse and that we all get tired. But she is getting better, she sees me on my bad days so she is beginning to understand.

    • sandy53965
      sandy53965 willowsamantha

      Posted

      Yes, it's extremely frustrating trying to explain to people how hard and sometimes impossible it is to do certain things.  We just finally had to make a decision not to let it get to us, and to focus our energies on getting my husband the rest, relaxation, and medical help that he needed.  But one thing I have told people about many times, is the fact that he was totally bedridden for many years, and couldn't even get to the bathroom without my help, and how even sitting up made him so sick that he always had to lay back down.  I've also explained that a person who gets up and tries to get ready for work, but ends up falling down onto the floor due to extreme sickness and weakness IS NOT LAZY!!  And that he pushed himself as hard as he could, and the body refused to cooperate.  It had NOTHING to do with laziness, but rather determination by someone who wanted to work, wanted to be strong, and wanted to be normal and healthy - but their body just simply wouldn't allow it.  My husband had so many falls due to trying it's unthinkable! 

      Another thing I've explained to people is that if someone offered to give my husband a million dollars (or the winning lottery ticket) in exchange for him getting out of bed and going downtown to pick it up, he WOULD NOT be able to do it, because he's too sick and too weak.  In other words, it would be impossible for him to do it even for Ten Million!!!  It's just not possible for him!! 

      My husband's illness started in his mid-twenties, and because he pushed himself until he became totally bedridden, he is still very sick today, and can do very little.  He has to spend his whole day on the couch, and the rest of the time in bed (with the exception of using the bathroom, going to his doctor's appointments, and maybe 10 minutes or so of standing or walking a little bit around the house a day.  That's it!  He's had this now for 30 years.  But atleast he's not totally 100% bedridden anymore and can get around the house somewhat.

      I wish you all the best, and hope you keep writing because I want to be here for you to help you through all this.

    • sandy53965
      sandy53965 willowsamantha

      Posted

      Oh yes, something I forgot to tell you abou the illness that you can share with your friend and others is this - One of the hallmark sympoms of the illness is fatigue and exhaustion that DOES NOT go away with rest or sleep.  That doesn't mean rest or sleep won't help at all, but it definitely mens that rest and sleep will NOT help the way it does for healthy people!
    • willowsamantha
      willowsamantha sandy53965

      Posted

      It is very frustrating! im glad its not just me being too "defensive" as I've been told. I wish I could, and I know I can put my health first, but in order to do that I have to take a step back from working so much.

      I'm almost 21 and I should be going out, having adventures, living my life! but that isn't really an option for me anymore. I am heading to Thailand for my 21st, which is going to be a huge test on my health, especially with the time difference! (wish me luck hahaha) I do find that when In a better mood I feel I have more energy, so I hope dad doesn't push me to my breaking point before then. 

      That's so sad, I really feel for you, I couldn't imagine going through that. Is he happy? You must be a very very tough woman to go through this yourself, and standing by your husband. You have stuck to your vowls in sickness and in health and I have absolute respect for you! So is he improving? What about both of your diet? As I have IBS with M.E which is extremely common, I don't eat much dairy if at all.. I don't eat much if im honest, usually just dinner and on occasions I'll have something for lunch.

      Funny how not all of my friends and even my dad don't try to understand me, but women on forums understand me and sympathise/support me more. Tis a strange world!

      I was told that Cornwall has a larger percentage than anywhere in the UK with people that have M.E,maybe I should move away haha.

      Thank you again for writing to me, and helping me through this! Your a star

    • sandy53965
      sandy53965 willowsamantha

      Posted

      Thank you Samantha.  I think about you often and am so glad I can help.  Write anytime with any questions.  I'll be praying for you.  When is your trip for your 21st birthday?

       

    • willowsamantha
      willowsamantha sandy53965

      Posted

      Ah sorry my name is Willow, my middle name is Samantha, I do prefer being called Samantha though! Has always been my favourite name.

      Thankyou, I might have to take you up on that. 

      My birthday is on the 19th of March and we go away to Phuket on the 21st, so it's going to be a very busy couple of days. Takes 5 hours to drive to London so I'll probably sleep most of the Journey

  • karine97200
    karine97200 willowsamantha

    Posted

    Hi Samantha

    I am so sorry that you are experiencing this, but sadly it is like this for many of us.  The family tolerate the ME/CFS for a while, then begin to think we should be able to control it or rather snap out of it.  People think it is lazyitis!  They sometimes see us on our good days and think that the illness has passed.  My relatives rarely sympathise and I have learnt not to say how I feel.  On my bad days I now make an excuse that I am doing something else, rather than try to explain how I feel as they are rather dismissive and also ridicule the problem.  It also takes too much energy to explain this.  Have you given your dad informaton on ME as he is your employer... if not try googling this  ,,,,  https://www.actionforme.org.uk/uploads/an-employers-guide-to-me-booklet.pdf

    I hope he can read how serious this is and that it is recognised by the NHS and NICE.  Take care

     

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