What you should say to those with MS?

Before I start this blog post, just want to put out a disclaimer... some of this blog was not written by me, some of the credit goes to Kayla over at Keep S'Myelin.

At the beginning when I was diagnosed, a lot of people would come up to me and say things which were meant to help me, but actually scared me or frustrated me.  I know people are saying things in kindness and to help me, and all the support I have had over the past year has been amazing and am so grateful for all the support.

I read this blog and thought that I would share it as it some of the things which people with Multiple Sclerosis or any other Chronic Illness would want to hear. 

Living with Chronic Illnesses, is not a joke, it is REAL. To those who are friends or family with some affected by any chronic illness, here are some thing to say to them so that they know you support them! 

I believe you

We deal with 95+ invisible symptoms on a daily basis. Keyword: INVISIBLE. You can’t see them. So just because you can’t see our pain, doesn’t mean we don’t feel it. When we complain about the pins and needles in our feet, or the electric shocks that go up and down our backs, or even the blurry/fuzzy vision we get, please don’t look at us as complainers. Yes, we can be ‘that sick’. I don’t like to use the word ‘complain’ – it’s more like venting. If you had to deal with invisible symptoms, you would understand. We don’t fake these things. So please just believe us.

I am Here for You

We need to know that we have support from our loved ones. We need to know that you are not going to abandon us. Re-assure us that you’re not going anywhere. Imagine being or feeling alone. Now add a chronic illness on top of that. How would you feel? Friends and family are supposed to be there for you through thick and thin, so show us that you will always be a shoulder to lean on. This way we know who our support system is.

I want to add something of my own here. Not only do we need to know we have support from our loved ones, but WE need to BELIEVE it ourselves, and sometimes that is difficult when the depression hits in… so if we question you, please do not be angry or frustrated with us.

Don’t give up

Sometimes we just feel like we want to give up, that we are not strong, we are weak and the fatigue can make us weaker.  The fatigue we are having is not just normal tiredness, it is bone aching tiredness – sometimes not being able to stand or carry on.

Here’s a fun fact: it takes up to 5 times more energy for a person with MS (or any other Chronic Illness) to do the simplest task than those without an illness. Imagine you had weights attached to every limb on your body. Now go ahead and do your daily routine with those weights. It is hard, but we are trying to go on with life, but sometimes we need a push to carry on and not give up. 

It’s the little things that count with us. The above statements are NOT the only things you should say to someone living with Multiple Sclerosis or a Chronic Illness. Please feel free to share your thoughts and opinions. What do you think is the most important thing to say to somebody living with a disease?