How Can I Get My Parents to Understand CFS?

[sarahbp93]

So, I've been having some difficulty trying to get my parents, especially my dad, to understand how I feel going through CFS. My mum's method is she just doesn't talk about it but my dad is the one I seem to be having problems with.

Whenever I try to talk about my symptoms, he tells me that I need to get more exercise and that I need to "just get over it". And I don't know how to tell him that sometimes that is really difficult. Today, I had a really bad symptom flair up and I couldn't even get out of bed because of how much pain I was in and he didn't seem to understand.

Does anyone have any advice? Thank you! X

[ALKT]

you can get some leaflets these days from various m.e charities you can stop calling it cfs as that was a wastebasket definition dreamt up by those in league with the insurance agencies. you could check out phoenix rising for the most up to date research data. just google it .it took 20 sodding years for my parents to accept just how debilitating this disease can be. best of luck.

[Lilly2017 in reply to ALKT]

Tell him you have a serous illness no human would not get over if we could fix it with some therapy.

Tell him that you met someone who has a father he's ignored, emotionally abused and finally estranged me from my own family after 20 years of telling me it's all in my head.

Look up CFS videos. Jennifer Brea is amazing. Tell him he must choose. Between you or losing you to this. Set yourself a time limit for him to treat you like a person.

God, I wish it in my head. Then I could fix it. Start with an immunologist. A neurologist. A cognitive behavioral therapist, because grief is on the road map and the sooner you deal with that and have a therapist help you deal with the tremendous diagnosis of this life stealing illness, you'll cope just fine.

Find understanding doctors who will be there to advocate for you. You'll need that. You need the therapist. Set yourself up to have a new kind of life. As for your dad? Give it a shot, but don't keep going back to an empty box.

I am dead to them. Because it's all in my head and I don't want to get better. My dad walked away. I've been doing this for 21 years. This year I decided I didn't need my dad. Because any of that filthy negative crap laid at your door is only going to make it worse.

Then tell your dad he's got to choose between being right or having a daughter. Mean it. Find us here. Because you don't need that heartbreaking line thrown in your face. It's not a diagnosis given out like sticks of gum. There are plenty of mental illnesses to go through and you didn't get saddled with it: that is lucky for a CFS patient. I know it's awful when the person who is supposed to love and protect you can't even see what you are.

Set yourself up to deal with it all. You'll be ok. We'll be around!!!

[ME65]

Hi Sarah

Go to this link and you can download pdf booklets about ME

actionforme.org.uk/resource...

Also try to get them to watch this trailer about Jen Brea who has made a film about her ME and how it affected her. IT's not something anyone can snap out of by being ignored anymore than someone can snap out of having MS or rheumatoid arthritis. The latest research suggests that ME is an autoimmune disease that affects the nervous system. It is a serious illness.

kickstarter.com/projects/95...

Best of luck with this xx

[margaret471 in reply to ME65]

I wish Dr's would take on board that it's an illness,most treat you like you have mental illness and until all Dr's except it then it will continue to be dismissed.

[mll2]

Jennifer Brae's UNREST documentary film should be in one of the smaller cinemas in Edinburgh in November. Encourage both your parents to go and see it, and go with them if you can? Having ME is a huge adjustment for you and for your family. Keep talking, be kind and say how it is for you as well as listen to how it is for them. My 19 year old son has had severe ME since he was 15. You are welcome to give your folks my details of they'd like someone to talk to about it? Even though I've had it all my adult life, so understand it from personal experience, it took me a while to get my head around my son having it because his ME is different to mine. Sometimes it helps to hear about it from a stranger? Someone who's not in the mix? Someone who you can say what you like to without hurting them? Wishing you all the best, mll2

[Julia_M]

I am sorry your mum and dad are not supportive. The best advice I can give you is to listen to what your body is telling you. There are leaflets and websites you could show to your dad that explain the symptoms and what you need for help.

I wish you well Julia

[princessmia5]

Hi Sarah, I'm not going to say it's going to be OK. It might not, some people are closed to illness that they can't physically see. My mum/sister are the same. She likes to tell people I have CFS, but doesn't seem to be able to process that at times it's a daily struggle and I could do with help. I have a small child and my husband works nights. I also work full time. At times it feels my husband works and sleeps, so I have everything else to do. No one seem to understand the days when all you can do it's get up. But I have to do things that most 'normal' people do and at times I believe I'm making this worse. I wish I could call on support but it's not without it being grudged.

I've always suffered from headaches and about 15yrs ago I had meningitis. I remember I stayed at home at the time and spent a week in hosp. despite being extremely ill when I got out (I had a lumber puncture which gave me a spinal headache for over 1 week and I couldn't move without being sick) she still had me up first thing doing chores as 'why should she be up and pay for me to lie in bed?' It's my worst memory.

Parents are of a different generation at times and lack empathy. It's not in your head and you may feel they are happier if you don't acknowledge it. But you must listen to what your body is telling you or your ability to understand/manage your illness will be very difficult.

Always here if you need to rant xx