Today is World MS Trend Day. It’s a great campaign to raise awareness about MS. so please pass it on, especially if you are on Twitter.
I’ve been thinking about what it means to raise awareness about various chronic conditions, illnesses, etc. It’s not enough to just make people aware that these diseases exist. What we need to do is educate people about them and how they impact our lives.
I knew about MS from the time I was in my early teens. For a short period of time I had an uncle with it (my aunt married him for a few years before things got really bad). All I knew was that it made it hard for him to walk and he had to do things more slowly than healthy people do. Eventually, many years later, he ended up in full time care and passed away. I don’t even know if the MS was what caused his death. More recently, I also have an acquaintance who is in full time care with it. Those were my primary points of reference when I received my diagnosis. In hindsight, that’s not much to go on!
So, what can I tell you about MS? Well, here are some things that I wish I knew before and that I think would be helpful for the general population to be aware of:
- MS is not a death sentence. In fact, it rarely takes lives, contrary to what the TV show “Scorpion” would have you believe (don’t get me started on the many other inaccuracies that show presents about MS!). True, there are rare times when it progresses so quickly and harshly that it can cause death (as we saw with Annette Funicello, for instance). There are also times when the prescribed medications can cause life-threatening side effects. But the disease itself is not usually a killer. To further clarify:
- There are several types of MS. The most debilitating kind is called Primary Progressive. It is also the rarest kind, and the most difficult to treat. There are no real medical options to help delay the onset of this fast moving form of MS. So Primary Progressive patients are often the most willing and ready to submit to new and sometimes even dangerous trials. The early stem cell research trials, for instance, are one instance that has been done on mainly Primary Progressive patients.The most common kind of MS is called Relapsing/Remitting. This is what I have. When you read about all the “Disease Modifying Drugs” (or DMDs) these are aimed at helping people in this stage. What Relapsing/Remitting means is that, while some symptoms may never completely go away, most come and go so that we have some times when we are OK and other times when we are having a relapse or “flare-up”, which can often be brought on by heat or stress. Or sometimes they just happen for no apparent reason.
The third kind is called Secondary Progressive MS. Most people with Relapsing/Remitting MS eventually graduate to the Secondary Progressive stage (though not all do). As the name suggests, this means that in this stage, symptoms no longer remit, but just continue to get worse and accumulate over time; sometimes fairly slowly, and sometimes more quickly. There is no treatment for this kind of progressive MS either.
And finally, there is Progressive Relapsing MS. This is also fairly rare and is similar to Primary Progressive MS, though some symptoms may remit at times. There are no prescribed treatments for this one either.
- MS is often referred to as a “snowflake disease”. What that means is that each patient has his or her own unique set of symptoms. They will have many, if not all of these symptoms in common with a variety of other patients, but no two seem to experience the same exact list of symptoms or progress at the same rate. So, when you meet some one with MS, don’t be at all surprised if his or her symptoms are totally different from the friend or family member you know who also has MS.
- The most common shared symptom among MS patients is fatigue. I’m not talking about “feeling a little tired”. I’m not talking about something that a short nap would cure. MS Fatigue is debilitating and affects every single aspect of the MS patient’s life. Imagine you have severe jet lag and also have just run a marathon, and now need to go grocery shopping for the next hour. Or imagine that you have a horrible head cold and just need to sleep. Imagine that it never, ever goes away. That is MS fatigue. It is unrelenting. Again, not every single MS patient has this. But most of us do. Some patients can take medications or drink loads of coffee to try and combat it, but many of us can’t. And fatigue is usually one of those symptoms that doesn’t remit. It’s just always there, like a giant weight on your back.
- Many MS patients look perfectly normal, though we are battling a range of debilitating symptoms that you can’t see. Not all of us are in wheelchairs, though certainly, some are. MS is one of the many conditions often labeled “invisible illness”. We look OK, but inside we’re dealing with fatigue, pain, weakness, brain fog, numbness, tingling/zapping sensations, bladder/bowel control issues, and a host of other symptoms. And yes, most of us just put on a smile and say we’re fine so that no one ever knows. Who wants to be pitied? We want to be taken seriously and try to fit into the world around us however we can.
- We often hear “how great we look”. This can be nice and encouraging, but it can also feel like a slap in the face because it can sound like you don’t believe we’re “really sick”. So if you’re talking with someone who has MS, while your first instinct might be to say how great we look, you may want to try something more sensitive, like asking if there is any way you can help or asking how our day is going today. It can be an uncomfortable situation trying to relate to and encourage someone with MS. Don’t be afraid to just admit that you don’t know what to say and wish you could help in some way. Honest vulnerability is a great thing. We feel uncomfortably vulnerable, so feel free to join us there!
- Don’t be afraid to ask questions! When we are first diagnosed with MS, we are overwhelmed with an onslaught of information to wade through about the disease: possible causes, possible treatments, and what we might expect down the road. It takes years to absorb all of this info. So it’s understandable that you are not an expert in this subject! Neither are we, but we probably have learned a little more than you have about it. Go ahead and ask. Anything! Questions can be incredibly refreshing in a world where everyone seems to think they know it all. As they say, there are no stupid questions. We may not have all the answers, but it’s OK if you don’t either. Which leads me to:
- Be slow to offer your “expert” recommendations. There are many different ways to approach MS treatment. There are prescription treatments to try and keep relapses at bay for as long as possible. There are diets and nutritional programs available to try for the same purpose. There are experimental procedures such as CCSVI Liberation therapy or stem cell research. None have a 100% track record for helping people. In fact, none so far even have a very good track record, and that is probably because this condition is so specific to each patient. So how patients chooses to proceed with treatment is up to them. Information is indeed power. But don’t assume that the patient has never heard of the option you were reading about on the internet the other day. Chances are, they know a lot more about it than you do.
- It’s probably not Lyme. It is true that many Lyme patients have been mistakenly diagnosed with Multiple Sclerosis. And that is horrible. Doctors need to be more diligent to do detailed testing to rule out Lyme. If diagnosed early, Lyme can be treated and even potentially cured with heavy rounds of antibiotics. (And boy wouldn’t that be better than being stuck with something incurable!). So it’s important to rule out. But most people diagnosed with MS have MS, not Lyme. If you want to mention the possibility that it could be Lyme, be gentle and be ready to admit you don’t know all about it.
- And finally, we’re all just people trying to get by and make it through the day. We still have hopes and dreams. We’re still goofballs who like to laugh at ourselves and have fun. The best thing you can do is not see us simply as MS patients. See us as people of value and worth who happen to have this particular struggle in life. Don’t be afraid to share your own struggles in life with us too, even if they might initially seem to you like they’re minimal compared to what we’re facing. Let us relate to you and get to know you for who you are, too.
I hope that little list is helpful to you. If you have any questions or additions, please comment below.