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How do I plan?

I was diagnosed late last year with MS, it’s likely I’ve had it for 10 or so years as the first ‘relapse’ was when I was 19, I’m 29 now and have had my second. I’m due to get married this year and the thing that’s worrying me the most is how do I plan our future? We’ve always wanted to have children together and now I don’t know if this is responsible or fair on the children, or on my future husband. I was looking forward to building a life together and now I don’t know what the right thing is to do.

Also financially, how do we plan? I’m the main earner, do we assume that this will continue or do we plan for this to change? I really don’t know what to do :frowning:

My situation was very different because I was older when DX and I already had a child but I shared your thoughts about planning for the future - still do. I can only tell you what I have done with 20 or more years of living with MS. Hope for the best and plan for the worst! I know it sounds trite but my mantra has been to do anything I wanted but to have a back up plan in case MS put a spanner in the works. In that 20 years I’ve done all sorts (lived in America for a while, started my own business etc etc) I have tried to be preemptive, but at times I’ve made daft decisions like buying a house instead of a bungalow!

It is a difficult point to be at with your married life in front of you but lots of MSers are mums! The financial thing is sticky. I would not build a stack of cards on your earning capacity. Enjoy your salary but plan what you would do without it. You may never be without it and that would be fantastic but don’t for example get in a load of debt that requires you to work when you would be better at home.

The most important thing is not to live and love life while you worry about what “might” be down the road. MS is a challenge, I won’t deny it but it’s not the end, just a pain in the bum!

Jane

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Things I can recommend from personal experience (my 2 cents anyway):

I think it’s always best to have the motto “hope for the best, plan for the worst” (it’s worked for me).

Re: Kids, if you’re set on having them and want to enjoy your time with them it’s better to have them earlier in case things late a turn for the worst later. I had kids about the same age as you with that fear in mind and I’m glad I did as I deteriorated a lot in their childhood. If I had not had them when I did I doubt I would have had them out of fear, having them was the best thing I ever have done.

Re: finances, again was in the same boat as you as the main provider, do you have insurance for critical illness or income protection (typically 2/3 of your salary until retirement if you become unable to work) already and are covered? If so you have that (find out th correct procedures and conditions to claim so you are prepared if the time comes), if not then there is a way still to get covered for income protection even though your MS is now an existing condition.

Companies frequently have group income protection insurance as a core benefit, the nice thing about this is that as the insurance company is insuring a group of people they can’t exclude someone’s existing conditions. The reason is they’d be excluding someone because of a disability, therefore its disability discrimination and illegal. So first thing I’d do is check does your employer have such a policy in place? If not can you encourage them to take one out as an employee benefit? If not, I’d think long and hard about your career, it may be safer to find a company that has one that you could work for and trying to get a job there (don’t have to but bear it in mind).

Income protection insurance is extremely valuable to have as a financial safety net, it will save you worrying all the time about what may happen to your dependents if the worst happens to you.

This may all be overkill and you may never need it, but it will give peace of mind when worrying about the future. Unfortunately the worst happened to me and I was so glad I worried about this stuff now that I can’t work.

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I guess a lot of us live with that in our mind. :slight_smile:

I am sorry that MS has thrown a grenade into your life planning - it is good at that!

I agree with other replies that employers are often the best source of safeguarding future financial security (given that MSers are basically uninsurable when it comes to critical illness cover, on account of having a qualifying condition already…) Someone mentioned income protection schemes, and don’t forget pension scheme provisions for ill-health retirement in the case of health breakdown. If your employer provides something decent along those lines, then great - stick to them like glue. If not, you might want to consider finding one that does - there is a qualifying period for most of these kind of things (typically a couple of years’ service before you’re eligible) so it’s good to start clocking up service asap.

MS really turns up the volume on the element of uncertainty in life - no question. It’s tough to deal with, but I think the only thing to do is to see whether there are easy things you can do to insure against the impact of future trouble, but not to get too fixated on trying to see into the future. No one ever can see far ahead, and that applies to everyone, although it certainly applies with bells on when a person has something like MS.

Alison

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Thank you to everyone who has responded, these are some really really helpful comments. I will definitely look into income protection insurance at work, it’s not something I’m aware of us having but it’s worth looking into. I guess it’s a case of getting everything into order in case the worst happens, but hope for the best as you say. I have quite a bit of debt from Uni etc. so I figure focus on that and insurance first, then think children if it’s sensible to do so.

Thank you so much for your responses, it’s really reassuring to know that other people have been through similar circumstances.

xxxxx

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Hi All

I’m new to the site and stumbled on this post whilst taking a look around. I just wanted to say EllesBelles that your experience and worries sound very similar to mine. I too was diagnosed last year. I also got married last year and I think that focussed my mind but now we are into a new year I am worried as to what it will bring. Like you, we had plans to start a family but now the question do we/don’t we is spinning around in my head and again, like you, we rely heavily on my salary so I am worried about our financial future. I am currently feeling fit and well so there is a part of me that wants to carry on as normal and can’t imagine life any other way but a huge part of me is fearing the worst.

It is reassuring to know that I am not alone (not that I wish this on anyone if you know what I mean!) but sometimes I don’t think friends and family (however well meaning or as much they try) really understand how stressful the uncertainty of MS can be.

I wish you all the best and hope you have the most fantastic wedding :o)

Lindsey