Every New Year, we’re bombarded with articles telling us how to ‘eat guilt-free’ and ‘enjoy low-fat treats without the guilt’. This comes straight after the very same publications have told us to hang the guilt, it’s Christmas.
Guilt. It’s a strange old thing. I’ve been reading through all the emails I’ve had over the last year from my blog and the one theme that comes through very strongly is guilt.
You guys have shared with me your most challenging stories, the hell of limboland, the shock of diagnosis and your fears for your families and future.
And in addition, there are often the words, ‘I feel so guilty – my MS isn’t as bad as other people’s.’ Or, ‘do I have a right to feel so devastated when I’m still relatively healthy? It makes me feel guilty.’
I feel the same. My MS was pretty bad initially but my relapses have stopped since Alemtuzumab treatment (how long for, who knows?). I felt a huge sense of guilt – it still hasn’t been approved by NICE, so I was simply in the right hospital with the right neurologist at the right time. Most of us who would benefit from this treatment don’t have access to it. At one point I thought seriously about closing the blog as I didn’t feel I now had the right to talk about MS as ‘it wasn’t as bad as other people’s’.
Let’s backtrack though. How should we deal with this guilt? Refuse all disease modifying drugs so we can truly experience MS at it’s worst? Or if our symptoms are mild, should we ignore the fact we are still living with a degenerative, incurable illness and therefore deny ourselves access to support? No. MS is not a competition (although there are people out there who think it is ).
MS is individual and our life circumstances are unique to us. MS affects us all in different ways, physically, mentally, socially. Guilt, on the whole, is an unnecessary emotion. It brings nothing positive and holds us back from moving on.
This year, I am going to banish that guilt. Instead of feeling guilty, I am going to channel my energy into campaigning and raising the profile of MS. In 2012 when I started this blog, people from 31 countries had read it. In 2013 it was 108 countries. This blog might just be a drop in the ocean, but in my own little way I hope I can make a difference.
We don’t know if the drugs halt slow down or change ms
Personal choice .
Is it all way the same ending ?
Will we have get as bad as that other person ?
Is it always going to get as bad as yo say.
Are these drugs the only way to change thing
The other side need to be promoted as the .
You need drugs !
Personal choice when you take drugs side effect can be worse than trying no drugs !
Sorry you need to show both sides.
From a twenty five year person !
I couldn’t agree more! Unfortunately though I can’t write about both sides as my MS was rapidly-evolving according to my neuro and I was pretty much on a downward spiral. Without the Alemtuzumab, I wouldn’t be functioning as well as I do today.
It’s a harsh drug I know, but when I balanced it out with being a single parent, running a house, studying and working, it was an easy choice for me to make. I was also offered Tysabri, but would have found it much harder to commit to monthly infusions for life as opposed to two infusions a year apart.
I will always support a person’s choice to not take DMD’s, that goes without question. Drugs are not always the only solution, but for some people, including me, it was the only way. And I speak as a homeopath!
Really, this post was not so much to do with drugs, but about people feeling guilty for their MS not being ‘as bad’ as other people’s. I wanted to point out that in most cases, that’s relative. We don’t need to feel guilty. Maybe it’s better to channel our ‘wellness’ into volunteering for MS charities or showing work colleagues that we can function just as well despite MS. A very long topic and hard to write in a 400 word blog post!
Happy New Year xx
I agree with everything you have said. My mum tells me off for the guilt thing as she feels I am a long way off putting myself first and she is right. I feel guilty as there are others worse off.
Feeling guilty is a time waster and I do not want to be haunted by this when I do reach ‘that stage’. I want to do things now because I can (to a point) and I believe in living like a dog, right here right now, in the moment.
Happy New Year Sam!
I’m with you. For me, when I was really, really bad with MS, my ‘guilt’ was about how I felt about the impact it would have on my son. Now I feel better after the Alemtuzumab, I feel guilty that my MS has been stopped in its tracks (although sadly with all the symptoms I’d built up before the infusions!).
Who knows what’s round the corner? I certainly didn’t see MS coming, lol. My life literally changed in the course of one day.
Hear hear! Well said that girl. 21 years after my first symptom I feel less guilty about a lot of things but still regularly feel guilty about not always being able to do things with my children and feeling guilty about what my husband MIGHT have t deal with in the future. On good days I think as long as I can stay independent and still get around I’ll put up with not being able to go for long walks and going hill walking, I will believe that a treatment for myelin repair will be here sooner than we think or..or..or loads of other positive things. On bad days …well I think we all think the same things on bad days. Now? Well I am about to feel guilty for shouting at my teenager again (not done it yet)as she still hasn’t finished her Spanish homework after 2 weeks of holiday and school is back tomorrow. Tomorrow, I will take a deep breath, drink a coffee and restart pilates. It s a new year, anything can happen. Onwards and upwards, eh?
Definitely onwards and upwards!
I think a lot of newly-diagnosed people feel a lot of guilt initially, especially if their MS is quite ‘mild’. They see people with much more severe problems and perhaps feel guilty and that they can’t complain. Then there’s the family guilt. It’s all too much!
Don’t talk to me about shouting at Teenagers, lol. My son’s only been home a day or so and I’ve already done my fair share. How hard can it be to pack a schoolbag?? Or put the laundry out for the laundry fairy? Grrr.
Ooh, good topic! Very true — I have felt guilty about appearing so “healthy” while also feeling guilty that I’m so tired I don’t want to do much or my brain is in such a fog that I forget simple things.
(Also feeling guilty about not taking down the Christmas tree over the weekend, lol.)
Yup, and trying to explain all that to other people who think you look just fine! It’s a very odd thing. I know for a fact my boss is starting to be driven insane by my memory. I forget the most basic things he explained to me just five minutes before. Old age or MS???
p.s. just removed the last Christmas deccie today, phew.
Think I’ve been fairly ‘lucky’. Apart from 2 bad relapses after birth of daughter in 2000 everything was very minimal. After starting copaxone in 2005 everything looked brighter. Now have changed to spms but, you know could be worse. Think as we get older and live with ms for longer we just naturally get less guilty and more bolshie. Lol
Very true! Now I’ve turned 40, I’m beginning to get even bolshier than before. If that’s possible…
Touch wood, since Alemtuzumab, relapses have been kept at bay. Seem to have mini flare ups which can last for a week or so at a time though. Plus the perennial foot drop, buzzing, fatigue, etc. Just all part of life now I guess.
At some stage all MSers are wracked with guilt and anxiety. How will I be this time next year or just tomorrow? Is this another relapse, will I feel better next week. Why do I shout, scream, cry when I drop an empty cup that I’m getting out of the cupboard?
Yup even today it still rips me apart and my first relapse was in 1979 and SPMS started in 1999. I don’t think drugs or DMTs affect your feelins any more or less than they do my own. I’m on the ASCEND trial, is it a placebo, is it getting better.
These feelings are life with MS, feel them then try to put them to one side and engage ‘the normal gear’. Life goes on and you have got to surf the wave with everyone else.
Well said! I read an interesting article about mindfulness yesterday that said, acknowledge the feelings, observe them but don’t ‘become’ them.
Mindfulness seems to be advocated for everything these days! If it can help with the guilt, I’m going to be reading more…
p.s. good luck with your trial!
Sorry, my punctuation and spelling were awful. If its any consolation you ought to see my handwriting, can’t read it myself half the time.
Another little benefit from MS
I’m with you – I used to have gorgeous handwriting, if I do say so myself. One of MS’s first casualties, sadly. I now scrawl.
Well I for one appreciate your blog site. As a nurse in Neurosciences I have picked up an insight into the lives of people who live with MS on a daily basis.
The ignorant judge and the worse off accuse.
Aw, thank you so much, that’s lovely to hear!
p.s. like that quote…