We all know the score – you try and say something helpful to someone when they are going through a rough patch and inadvertently end up saying completely the wrong thing.
The same goes when you have MS.
The people that you love around you are often scrambling to say something to say that will make you feel better, and more often than not you think that they choose the wrong words. I find that no matter what someone says to me sometimes, it will never be the ‘right’ thing because there is no ‘right’ thing to say. Sometimes it can feel as though they are uncaring, unloving or not at all understanding of your feelings and needs.
With my family and friends I always try and remember the times when I have tried to make someone feel better and ended up saying something that was unintentionally annoying or hurtful so that it doesn’t bother me so much if they make that mistake.
That being said, I thought I would round up the top 10 seemingly innocent things (in my opinion) never to say to someone with MS.
These are some of my personal bug bears – I thought it would be good to get these out there so none MSers can read what it’s like from the other side, and MSers can recognise that your loved ones probably don’t mean to offend.
NB: This post also isn’t meant to be a rant at people who don’t have MS – it is more an appreciation of how things can come across to someone who does have MS. I have also included some personal suggestions of what I would rather hear as an alternative 🙂
I’d love to hear your thoughts on these (and if you have any more to share).
You don’t look sick/disabled
Whenever I tell people that I have MS, one of the responses is that ‘you don’t look sick’. I guess this is a little annoying because you cannot always tell how someone feels just by how they look. MS can be (for the most part) and invisible illness and so someone can be really struggling but managing to hold it together to put on a good front. I think if someone came up to me and paid me a compliment instead, or just asked how I was, I would much prefer that.
You are so brave
I am not overly fond of being called brave just for living my life, even if I do have some additional challenges to face due to having MS. I can completely understand why this is meant to be a compliment (perhaps they mean strong willed/independent/tenacious), but I am not sure I personally like the idea of being brave for just living my life. Someone commented to me that I was brave for retraining and carrying on working despite having MS – I find this a little bit patronising. I know they mean well, but what else am I meant to do?
In my opinion, rather than people telling me I am brave, I would rather hear ‘you showed real resilience dealing with x and y’ or ‘how do you stay strong minded with the ups and downs of MS?’
I feel bad for you
When I was first diagnosed with MS this was a phrase that I heard all of the time. I know that it came from a place of love, but actually it was really painful to hear people say that they felt bad for me. I think that my main issue with someone saying that they feel bad for me is that they are admitting that I am in a place that they are glad they aren’t in, and it sounds like an assumption that my life is worse than theirs. Perhaps with this one if people empathised instead and said things such as ‘I am here for you’, or ‘I understand’, or ‘I feel for you’…
You are too young to have MS & MS is easier on the young
I tell you what – NO I am not too young to have MS! Looking at the number of friends that I have that are around my age or younger and they have the disease, I am not the exception to the rule! MS is not any easier for the young, and it is not likely to get any better. Although there are better drugs coming out all of the time, and my disease may not progress in the same way as if I had been diagnosed 20 years ago, I am still in the prime of my life and living with some pretty eyebrow raising neurological symptoms. Put it this way – I did not expect to be dealing with bladder issues and mobility problems at my age. I think having to come to terms with a serious life long condition and managing a medley of monthly hospital appointments is really overwhelming at times – I do not think it is any easier for a young person.
I think in this circumstance, I would rather that someone asked me more about my MS and the typical age that it affects rather than assuming that they know already. I am always more than happy to have a chat about it.
I am tired too
This is a classic phrase that I am sure that we all hear all of the time but highlights how people are not aware of the difference between tiredness and fatigue. I have tried to describe fatigue to people as the combination of jet lag and the flu – leaving you absolutely dead on your feet, or walking through a muddy bog wearing flippers. Fatigue can come on incredibly quickly and no amount of sleep will necessarily help. Doing even the smallest tasks such as brushing your teeth or eating a meal can feel like a mammoth task. I just say to people that I am tired now (or don’t say anything at all because there isn’t any next best thing to compare it to).
I think the hardest thing to explain is when I wake up in the morning, get out of bed and I feel like I haven’t even slept a wink. Or when it hits like a ton of bricks half way through a meeting, or just as you are about to set out to meet a friend.
You are so lucky to be able to park in the disabled bays
No. No. No I am not. I tell you what, I will swap being able to park there for not having MS?
I think that I would rather hear someone say something like ‘I am really pleased you have been able to access the support you need to make your life easier’ or ‘I am really glad that things have been put in place to mean you can maintain your independence’
Why don’t you get stem cell therapy?
About a year ago or so there was a documentary on the TV about Stem Cell Therapies and the aftermath of that documentary was a nightmare! The number of texts, emails, print outs, calls, conversations in the street… people were asking me left, right and centre about when I was going to go for stem cell therapy. Well firstly, it’s a trial at the moment and so it isn’t widely available and secondly I am not eligible for it because my current medication works really well for me.
Although I know that everyone was just trying to be really helpful and supportive but it can be incredibly overwhelming when everyone is telling you about the next ‘new’ treatment assuming that you won’t know about it already. I think I would rather people asked ‘I read about X treatment. How do you feel about it?’ or ‘what is your treatment – can we talk about it?’
You’ve improved – maybe they got it wrong!
Well wouldn’t that be lovely. This is a thought that I had myself immediately after my disease modifying drugs started to become more effective. I was lulled into the false sense of security that they had misdiagnosed me and I didn’t have MS at all. That was until I had another relapse and new symptoms appeared. Now I have so many residual symptoms on a daily basis that I know that MS is my forever friend. Thing is that RRMS changes from year to year, week to week and day to day. Hell – I change from minute to minute on a bad day. I can feel amazing one week and then can barely string a sentence together the next. The bonus of the medication that I am on is that I am having an ‘MS holiday’ – so the majority of my most severe symptoms are being held off and my relapses are not having the same impact on me as they used to. BUT the remitting part does not mean cure or that I was incorrectly diagnosed. Yes MS is still here, and yes it is here to stay!
I think I would rather someone said to me ‘You look like you are coping better these days – do you feel it?’ or ‘how are your symptoms these days?’
You are lazy
Although I have heard this anecdotally from other MSers, my personal account of this comes from a conversation that I had with someone who asked how I did my shopping and I said that I ordered the groceries online and got them delivered to the house. This was swiftly followed by a snort of derision and a comment that I was ‘lazy’ and should go out and shop around. Usually I wouldn’t rise to the bait but on this occasion I could not resist and replied ‘I would love to go to the supermarket for a big shop and be able to shop around, but I have multiple sclerosis’
I did feel really guilty for making that person feel uncomfortable but actually there are lots of things that I would love to do or that I am able to do but find really challenging, that other people take for granted.
A lot of people with MS get called lazy because they have had to reduce their activity or change the way they do something due to pain or mobility issues. I think we would all rather be asked ‘how can I help you do X and Y?’ or to have a buddy to go out and about with for MS friendly exercises.
I know how you feel
Sometimes you might – but sometimes you really couldn’t even imagine. Unless you have MS, or a chronic illness with similar symptoms, it would be impossible to begin to understand. I know that people mean well when they say this and so I have left this one until the end… I would rather someone said ‘How do you feel?’ or ‘I cannot imagine how that feels’
That’s my top ten done with. I hope you enjoyed reading these. Let me know in the comments