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Man with MS struggling with invisible symptoms

A Person with Multiple Sclerosis (PwMS) walked into a bar.....and a chair...and a table. "I'm not drunk I have Multiple Sclerosis (MS)".

A book should never be judged by its cover but it happens all the time because first impressions last. From the outside, it’s possible that people won’t know that someone has MS, because the symptoms may be invisible. 

There are so many signs of MS that it is almost impossible to enumerate them all and certainly not to place them in a hierarchy. But I personally believe that the most awkward and embarrassing invisible symptom is urinary urgency; that feeling when you just gotta go. You get to the loo and there is a queue; what to do? Wait and risk the ultimate embarrassment – 'an accident' - or go into the disabled toilet and risk the glares and stares as you leave. Personally, I would risk the glares and stares. Of course, the flip-side of urinary urgency is slowness and this also poses problems; the looks of people waiting and waiting and waiting. Another part of the urinary problem is frequency. You know, when you've just finished your business and shortly after you've left the loo you feel the need to go again. Ignoring the urge is just not an option.

Fatigue is impossible to see and difficult to describe. It is not like the suffering experienced after a hard night out partying followed by a long day at work. MS fatigue can swoop in and wipe you out before the party has even started! There is no guarantee that a long rest or even a good night's sleep will restore your energy. Plans are often cancelled at short notice and soon the invites stop coming because you 'always' cancel at short notice and may be perceived as anti-social. Please keep the invites coming we are not anti-social. The other aspect of fatigue is the inability to be fully productive, to take part in everyday activities and appear lazy.

Pain is invisible and when it is added to fatigue it becomes more than a double whammy. It becomes a total wipe-out, total devastation.

Weakness in my legs was a serious problem from my early days and not just from difficulty walking. I couldn't stand and have a chat with someone; I would have to sit down and, if I didn't, my legs would just buckle at the knees after a matter of minutes. Tripping over nothing at all is a special MS gift and it is often compounded by foot-drop, which is fairly invisible unless you know what you are looking for. Difficulty holding a pen and writing or carrying a mug of coffee without spilling it are other MS gifts. These are often explained as clumsiness or not explained at all, particularly in the early years. Focus and concentration are other casualties.

Having mentioned knees buckling, tripping and walking into things, all of which probably end with time on the ground; which is the most embarrassing: the fact that you are on the ground, or that people mill around looking and a well-intentioned few attempt to help you get up?

Speed and MS do not go together. Getting out of bed takes time because I must test myself to see what is, or is not, working on any particular morning. Shaving must be done with caution; anything involving blades and MS must be approached with care. Showering must be done with concentration because of the risk of falling. Getting dressed takes extra time, not for fashion purposes, but simple things like doing up buttons and pulling up trousers. These are only visible to your nearest and dearest. And I can't even begin to appreciate the difficulty involved in applying makeup.

All illnesses start with an invisible phase when no one is aware except you; MS is no different. Historically MS was difficult to diagnose and because of that it often remained undiagnosed and invisible for many years. 

As we learn to live with our MS, its restrictions and limitations become the norm and every relapse brings a newer, more restricted, norm. There is no cure. We become accustomed to its limitations and restrictions and adapt our lives accordingly. For many people, bystanders looking in, it remains invisible and they remain unable or unwilling to make allowances or see beyond the cover.  

Make sure your MS team, family and carers know about and track these symptoms. Emotional and physical help for your invisible symptoms are available, speak to your MS team to find out the best course of care for you. 

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