I have had the MS symptoms on and off for 25 years but only recently diagnosed
When I had no symptoms I was pretty fit and could run and go to the gym and that’s what people knew me for
Now I have had the diagnosis and have told people they tell me that’s not possible as I’m fit
I feel like a fraud if I’m having a good week and someone sees me running ( very slowly I might addd lol )
Do any of you exercise on good days and feel like this
Hi,
I exercise 2-3 times a week and always have (strenuous exercises). I’ve told my partner and parents about my diagnosis and even for me it’s hard to believe it. Most of us probably have had and some still have the misconception that multiple sclerosis is an extremely disabling disease but there are different types of MS and these are experienced in a different way by different people.
I also feel like a fraud, especially now that I’m starting a new therapy and keep on feeling as if all that hassle is unnecessary.
So, there you go, you’re not alone.
I think it’s best to feel as if you’re a fraud than experience severe disability.
I’m afraid that my days of passing for normal on a good day are long gone! I can see your difficulty, though. We are social animals, and very sensitive to what others think of us, or what we think they think of us. So the trouble starts when others are ill-informed. I think it is a good plan to grow a slightly thicker skin if you can. Some folks are willing to learn to understand about your condition, others either can’t or won’t. And that’s just something we have to put up with as best we may.
Alison
At one time I was down the gym 5-6 days a week doing weights and cardio. Depending on what was happening during a relapse I may have stopped completely for months. Haven’t been for years due to progression but I remember back then others not believing me or thinking I was exaggerating. Didn’t let it bother me. Only persons opinion that really matters is your own.
Explain not ever disability is visible. There are plenty that are invisible or subtle enough it’s not obvious. If they don’t believe you just ignore them. Their ignorance is not a you problem it’s a their problem so don’t make it a you problem. You have enough of your own problems to deal with.
I understand how you feel with regards to how we can be perceived. I am often told I am looking great when inside I am struggling. Great in one way as I do not want to look ill. But on the other hand people expect me to be faster moving, quicker thinking, full of energy etc. MS is a hidden disease and as such people do not always understand good days versus bad days. Do what is right and comfortable for you.
I relate to the previous comments, I’m reasonably fit and look well, some folk just don’t get it. Try not to sweat the small stuff, live the best life you can for yourself.
I went several decades without a diagnosis, although I certainly knew that something was wrong and was leaning towards it being MS for the last 20 years. I was so active and moved at such a high rate of speed at my job that no one would believe I was sick when I had days when I couldn’t get out of bed.
Fortunately, I had extensive sick leave, but there were coworkers who frequently thought I was calling off work just to go out and have fun. My own relatives called me an attention-seeking hypochondriac during those times, and for my own sanity I just learned to ignore them all.
Do what makes you feel good. When you have a good day, go out and have fun. When it’s a bad day, take care of yourself. Hopefully, the people around you will eventually adapt. If not, you might have to start avoiding the worst ones.
I completely know how you feel. I was diagnosed almost 5 years ago now and all I have ever had is some mild tingling in my spine (L’Hermitte’s sign) and I take DMT’s 3 times a week. I am otherwise not affected and run regularly, work full time. Most people don’t even know I have MS. I am so so grateful for my situation but I feel like a fraud. Especially since Covid when I have been classed as Extremely Clinically Vulnerable and received both my vaccines early, was sent home from work early and am likely to be the last one in. Found this really hard to deal with especially when I think of how to explain to other colleagues why I’m being treated differently…been tricky but think we’ve got away with it. Been particularly tough lately as trying to move house … although been gazumped…and lost my dad who I was carer for so sometimes it just all gets too much. Need to give myself a kick up the bum and go running again to get some positive endorphins going but lockdown had got me and my family in a rut and finding it hard to claw my way out. Hope you are ok. If you ever want to chat. Please let me know xx