Last reply 5 months ago
If only my invisible illness was visible

I think one of the most difficult things about having MS (and many other chronic illnesses) is that it is an invisible illness.

So many symptoms cannot be seen, a bit like the amount of an iceberg that is under the water, and are therefore not always taken seriously by those around us.

There are times I wish those symptoms were visible in some way;
– the word “fatigue” lighting up on your head when you have a nap or sleep for 12 hours
– the word “pain” when getting nerve pain
– the word “cog fog” when you are just having one of those days where you can’t remember anything or think straight etc.

Due to people not being able to SEE the symptom we then have to deal with people thinking we are lazy, dramatic or stupid. As much as those close to us say they understand they just don’t and at times can say hurtful things or belittle what is being felt.

If only it was more visual then we might not feel guilty about trying to alleviate the symptom by napping or taking pain killers etc.

I think what people who know someone with MS or a chronic condition need to do is read up a bit on the condition of their loved one, take what they tell you seriously and don’t just disregard what they say. Most importantly, stop and think before commenting, as a very simple “are you sleeping again, you’re so lazy” can really hurt.

Work together, ask questions and gain knowledge on the condition as it will make things easier for everyone involved.

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5 months ago

@juliacemilligan , that is so true.

If MS is a misunderstood, invisible condition, then it pales into insignificance when compared to that other invisible condition, ignorance! 😉

One day, there may be a cure for MS. But, ignorance will be with the human race forever!

By the way, @juliacemilligan , what are you doing up at this ridiculous time in the morning?

5 months ago

Hi @juliacemilligan I’m one of the old codgers. Have had the beast for 26 years so have been dealing with the ignorance for a long time. I now have an electric wheelchair and a mobility scooter. I tend to use the later when popping to the shops because there is no basket on the wheelchair! But you won’t believe the number of people who comment on the mobility scooter, things like “do you really need that” and “well anyone can buy one if those” I’m 62 and have cancer as well but I have had to learn to let it go above my head and not react though I have offered to ‘swap’ my disease with them for a day and see how they deal with it👹🥊

5 months ago

Hi @juliacemilligan, you are absolutely right. This is another frustration felt by people who wish to claim PIP or other benefits; much of our suffering and endurance can’t be captured on government forms, or by civil service staff. I think this is the reason that sites like this are so important; we know what it feels like to be us!

5 months ago

People can sympathise with you but they will never understand. Unless you love with MS you will never know how it feels to live with MS.
Ignore people and their ignorance, don’t have anyone in your life that is going to make you feel less than or not even try to understand you. People will always have something to say, it’s learning what they say doesn’t matter. It’s your life and you live your life not them. It can be very frustrating at times but brush it off.

5 months ago

And thats the worst betrayal from your own self
And back stapping
Ok i dont want to see it but at least a warning hehe
Thats why deprrssion accure in many MS patients sorry for sounding so dark but truth hurts

5 months ago

True story!

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