studentandms 29/03/18
Last reply 3 months ago
Parents reaction to my diagnosis

Hello everyone, I just wondered how your parents have reacted to your diagnosis?

I’m in my early 20s and my mum has taken it really hard, so much so that she had a hospital admission which was most likely bought on by stress of it. This obviously isn’t the life that she has planned for me and therefore it has hit her hard.

Does anyone have any stories about how their parents dealt with it? Or any tips? How to deal with their parents anxiety whilst also coping with the diagnosis myself?

Any thoughts would be much appreciated!

Thanks!

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


vixen
3 months ago

Hello @studentandms, as a parent of a 20 – something I fully appreciate what you Mum is feeling. I would say though, when Your Mum was your age, the world of MS is very different to how it is now, so she will need some reappraisal of this thing we are blighted with. There are other parents signed up to this site, maybe you could encourage her to join and be in immediate contact with others who totally understand where she is right now. In time, you will all be able to look back at this time, see how tough it is, but also that you are coping, and that life will go on. Granted, with some mental adjustments, but it’s all about recovery, rebuilding and redesigning. You’re on that path already. Love and be thankful for each other, keep doing your research and investigations, keep posting, and live life. Lots of love to you and your Mum.


stumbler
3 months ago

@studentandms , Parents can feel guilty about our diagnosis. After all, they made us and they feel responsible for making you imperfect.

They need to be reassured that it wasn’t their genes at fault and you were just unlucky.

And, as @vixen mentions, do let them know that MS today does not have the same prognosis that it once had.


tracyd
3 months ago

@studentandms

Sadly by the time I was diagnosed in 2014, my parents had both passed away.

My younger brother however didn’t take the news well initially. He did the ‘google’ thing and saw the worst case things that google shows. What helped for him was watching me take the fight to MS. I was totally open about what treatment I was going to have, the hope it would give that ‘worst case’ wouldn’t happen and life would be okay.

For him seeing that going to war against this MS nonsense was giving me strength and hope. In a way it gave him something to brag about, his big ‘sis wasn’t standing for this sh** and was going to war, and his money was firmly on me winning.

It’s been nearly 3 years now since I chose and had my treatment, sadly my brother is now also gone 🙁 . My mum’s sister is my remaining family member I’m close to and she’s an absolute rock.

The treatment was meant for nearly 3 years I’m NEDA – No Evidence Disease Activity – unless I relapse again I will have no further treatment for MS.

Perhaps it’s worth taking a look at my story for you and your family, it’s published in real time for the last 3 years here : http://www.tracyslemtradajourney.co.uk

Year 1 of the blog is also available on Amazon as an easy to read eBook for £1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity.

You have a friend request, if you need someone to talk to I’m happy to share contact details by private message xxx


mightymichymac
3 months ago

My Dad’s reaction was such to wait and see how it goes – he’s the strong silent type so I wouldn’t expect any more/less of him!

My Mum has Alzheimer’s so she forgets about it pretty much as soon as I tell her ;-(. I don’t tell her that often as I don’t want her to get distressed about it. I’m quite lucky in that I’ve only ever had one relapse (that I know of!) and it sorted itself out within a couple of weeks so it hasn’t impacted my life that much yet.


docnct
3 months ago

Hey studentandms,
Vixen is correct that when your Mum was your age it was very different. There are so many more options and ways to engage this interruption. My son who is now 48 has for years refused to believe what his eyes could easily prove to him. Finally, he realized that denying it was of no help to me and wasn’t making it disappear. Many people have a difficult time with it but as time passes and you will improve in ways. The beginning is always the worst at least it was for me. You need to be using all your energy for you to continue to lead your life and not be stressed about how anyone else is handling things, mum will come around and probably be your strongest supporter in many things. Your mum will see that being afraid instead of engaging and being in control of MS is the way through. You have a great life ahead of you – continue your studies and be happy you are living in this time. Doc


eigenhater
3 months ago

Hi @studentandms

It is interesting to see someone else my age on here, as usually the site is frequented by our older companions. I was diagnosed last year a few months after my 21st birthday and I was extremely relieved, almost happy. I finally had a label to put to everything that was wrong with me and I knew I just wasn’t going insane. Of course, now I am struggling with the day to day living and it’s a whole other beast to conquer, but alas life goes on.

This whole time my mum took this so much harder than me. From seeing me not being able to walk because my legs aren’t working, to seeing me feel like I’m having a heart attack, not able to get out of bed, to seeing all the horrible things that come with MS taking a hold of me must have been an immense task that we can’t even begin to fathom as we’re not parents yet. Apparently she had called the MS nurse a few times without me knowing to get information about the disease, and she actually broke down crying when she came with me to one of my appointments.

I would suggest making sure your mum has just as much contact with your MS team as you do, and perhaps even get her familiar with your MS nurse(s). One of my MS nurses is the most proactive person you can ever meet and at my most recent meeting gave me over an hour of her time, reassured my mum and me both that we will get over this AND referred me to the dietitian, optometrist, urologist and physiotherapist. When you have this open two way conversation with your MS team it can really put your mum’s mind at ease – I know it has done for my mum. It is still very difficult, as I am still as bad as ever and getting worse but at least my mum has an outlet.

Another thing I just thought of was local support groups. I have one about 20 minutes from my house for MS patients and family members alike – they offer a sort of community not unlike what is here for people with the disease and people dealing with those that have the disease, so I’m sure going along would be pretty helpful if you can find something local.

At the end of the day it’s a tough one for both you and your mum – you dealing with the disease (which sucks) and your mum watching her precious child that she’s raised lovingly go through it. I think communication between the both of you will be paramount, and I wish you both the very best of luck!

Doesn’t help that there’s much less youngsters around for support, sometimes I feel excluded from the local groups because everyone is old and for them it’s acceptable to walk around with a stick. Ah life is tough.


adbdarly
3 months ago

I’m not a very religious human, I wasn’t raised that way, but my mom is to a certain degree. She believes in God but doesn’t adhere to the other things like Church and such. I think she lost her faith after I was diagnosed. My mom experienced a lot of loss at a young age and I think she just didn’t think that any of it was fair. I remember sitting across from her and saying, “Do you want to know how I cope?” And she looks at me like I’ve got the answer and says yes. I told her that if we were suppose to experience something bad, let it be this. That something bad could have been loosing her, or loosing my brother. If this is what the universe dealt us, let me take it, let me be the one. I honestly think that helped.

My dad on the other hand doesn’t really talk about it and never has. He’s under the assumption that talking about it makes things worse. But I’m sure it’s just his own way of coping.


edmontonalberta
3 months ago

@studentandms

Nobody has mentioned this, so I will…

Everyone is different. We have own strengths, weakness & more important – personalities. As do our parents…

When I got married with my 1st wife my parents gave us $1,000 to help with the wedding expenses. Then my Mom started getting involved with the plans – I came home one day to find my wife in tears because of something my Mother wanted. I called my Mom up & told her that we did not need her money & if she ever made my future wife cry again that she would not be invited to the wedding.

Problem solved. My wife had the wedding she wanted, my Mother was the perfect Mother-in-Law. And they loved each other. May they both rest in peace…

If your Mother raised you right (as she probably did) you are an adult she is proud of – she did her job. Thank her for that…

How you handle your situation going forward, I do not know. But you have to set ground rules to move forward – for your health & peace of mind!


studentandms
3 months ago

@vixen and @stumbler Thank you for your messages. I have tried to reassure her that my diagnosis is different now to what it was when she was my age. I also have a friend who has MS so hoping that seeing that she is ‘normal’ will reassure her too. I shall also try and reassure her that it isn’t her fault either.


studentandms
3 months ago

@tracyd Thanks so much for sharing the response of your brother and your family situation. It’s really helpful to hear how other relatives have reacted and what you did you reassure them. I’m sorry too for the loss of your family members.

Great to hear that you are NEDA post Lemtrada! I am about to start Lemtrada in two weeks so i shall definitely check out your book.

Many thanks!
Louise


studentandms
3 months ago

@mightymichymac Thanks for sharing. My Dad is similar in his reaction. Sorry to hear about your mum . Sending best wishes!


studentandms
3 months ago

@docnct a really helpful reminder! I often feel torn about trying to accept this diagnosis myself and using my energy for that and between making sure that my family are okay. Sending best wishes to you and your son


studentandms
3 months ago

Thanks for your message @eigenhater . Nice to know there is also someone near to my age.
My diagnosis was similar to yours. After 8 months of living in limbo land and tests, but deep down knowing I had MS, I was so happy to finally have a diagnosis and have something to call my symptoms. Somehow having a legitimate diagnosis, helped me not to question if my symptoms were all in my head or just anxiety (as a helpful neurologist that I first saw, who wasn’t an MS specialist, told me that it could be down to anxiety!!) I think that now I don’t really know how to process this diagnosis though.

That’s really helpful to hear how you got your mum involved in the process. So far my mum hasn’t really been involved as I have a sister who is a nurse who I like to take along to my appointments. However, I am about to begin Lemtrada and my mum is going to be with me for that so hopefully that will help. I have directed her to the MS trust and society helpline, but perhaps talking through more openly with her could be helpful.

I’m pleased that you have been able to access support groups. I think for now, I’m not ready for support groups because it’s such an individual disease, that I won’t want to become anxious thinking, ‘will I get that symptom or relapse’ etc. I have a friend who is older than me who also has MS so that has been a good source of encouragement and support.

I’m happy to chat further by private message if it would be helpful to speak more with someone your age too.
Best wishes!


studentandms
3 months ago

@adbdarly Thank you for sharing how your mum and dad reacted to your diagnosis.


studentandms
3 months ago

@edmontonalberta A helpful reminder to set boundaries. Many thanks


Anonymous
3 months ago

@studentandms Telling my parents about the diagnosis is the hardest thing I ever had to do. Although they knew about some of my symptoms, which all seemed minimal, they had no idea how serious it was (me neither). I thought the best way to reassure and comfort them was to involve them as much as possible, for example taking them with me to the Neurologist.


brainz
3 months ago

My parents wasn’t like that at all my dad has not really spoke about it but has been awesome helping me out I have just gone downhill so fast and I think I have seen my mum about 5 times since and I was diagnosed in January of 2015 maybe she can’t handle it or something I don’t really know her opinion on it or if she even cares but we each have are own stuff to worry about @tracyd I did try reply to your pm but my phone won’t let me IL try on pc later


imagwms
3 months ago

I’m 18, my dad is deceased. I got diagnosed in December 2017. My mother took it pretty hard also, she was on leave from work for a whole month and a half. Being the strong person I am I tried my best to be strong for her, I didn’t want to cry in front of her so I battled a lot by myself. My advice to you is definitely surround yourself w support, people that are willing to try to understand you. Stay strong ♥️


studentandms
3 months ago

@imagwms thanks for your comment. I have had to do a similar thing to you. Sending love to you as you continue to work out what this means for you


lara279
3 months ago

Hello @studentandms – this post is very relevant to me at the moment. I didn’t tell my Mum when I got diagnosed in November last year – I wanted to wait until I had a treatment plan. She worries about me so much at the best of times and she lives alone; I didn’t want her to be obsessing over it whilst I was still in limbo in terms of next steps. Once I had decided on a treatment and discussed it with my team I told her. She was devastated and shocked. I have a great aunty with MS who is 95 years old but has been pretty disabled for many years now and can’t leave the house. Obviously DMDs came too late for her. She has gotten her head around it a bit now but hasn’t told any of her friends – the only people she talks to about it are people I have also told; my Brother and my boyfriend’s parents. I am not sure if she is in denial but she struggles a lot to communicate with me about it. I guess we have to remember that our parents are only human – they do what they can but they are flawed just like us. My Mum doesn’t know anything about the disease and can’t bear to educate herself. I find information is empowering so I am a bit frustrated that she wants to bury her head in the sand but I try not to think badly of her – I know it’s only because she loves me. Not sure if any of this is any use to you – sometimes I think (and hope) just hearing other peoples experiences can be comforting. You’re doing great and your Mum is lucky to have a child who as well as facing up to this terrible condition is also thinking about her wellbeing too 🙂

Post Comment

You must be logged in to reply to this topic.