Friends/Family, what do you see when you look at me? I bet you don’t see what I saw when I looked in the mirror after I was diagnosed with Relapsing/Remitting Multiple Sclerosis (RRMS).
Let me explain a bit. Once a person has been diagnosed with it can be pretty devastating. The uncertainty that comes along with one of the first things you hear from your doctor, “This disease is incurable” can sit on your mind and heart like a mountain the size of Mount Everest. It can be physically hard to breath. It doesn’t really matter what they say after that sentence… “People live out normal, regular and full lives for the most part. You can live a full and productive life even with the diagnosis. There are therapies out there that will keep the disease from progressing any further. Healthy eating and exercise will help you.” And they say pretty much all of that in one breath! It all sounds like a Charlie Brown teacher talking,
because all anyone usually hears initially is it’s a life sentence with a disease that has symptoms that no one will every really understand unless they have it too. Your symptoms will probably not show like someone else’s because everyone’s disease looks different. OHHHHHHH GREAT! Now I may not even have the same symptoms in common with someone even though we have the SAME disease!!! For good measure, throw in the icing on the cake. There is no real test for MS, sometimes it takes doctors years, and I do mean many years, to get a true diagnosis. So for most of that time people on the outside JUST might think you are faking or you’re a crazy hypochondriac. Welcome to the world of a person who has a functional relapsing/remitting MS diagnosis!!
So I ask what do you see? What do you know? I can’t tell you how many times I have heard someone say, “Well, you look so healthy.” A lot of them who’ve said it know I have MS. I mean, I know I look pretty normal, but that doesn’t mean I feel normal AT ALL. If we could just tell my brain to function properly, so the butterflies would stop the fluttering in the ribs, or the tingling in my face and head would cease. You can’t see the pinching feeling I get on the left side of my back. And the fantabulistic advice I get to take a nap when I’m fatigued. Which by the way, we do want to sleep when we are fatigued but it doesn’t usually help. We aren’t just sleepy, we are chronically fatigued! The cause is our bodies are not functioning properly. Now from time to time you will see me limp from weakness and I have issues going up and down stairs and for a minute you will “see” me look disabled. Howeverrrrr, this is usually when someone thinks I have been injured and hopes I heal quickly. If that person doesn’t know me, I’m not offended, because I do look injured, but this usually comes from people that know I have MS and that is ever so frustrating. I mean, seriously, you just forget I have MS, because I don’t look like I’m disabled?
I think its safe to say most people with MS feel like we are trapped in our own bodies and wishing we could rip out of the prison we feel locked in and be the person we use to be before all of this started. When I was first diagnosed I literally felt like I was locked inside a cage looking out the bars. I felt restricted from so many things I was use to doing and not even my family seemed to get it. I couldn’t workout like I use to, I found that eating like I use to make my symptoms worse. I couldn’t get upset and go for a walk alone, or at least it felt that way, because initially I was so symptomatic I was scared I’d get stuck somewhere and couldn’t walk back. Grocery shopping was TERRIBLE, outings with family and freinds were even worse. I needed some type of wheel chair to get around just to shop, theme parks and such were a no go, because the rest-breaks I needed to take were out of control. My friends and family didn’t understand that this disease could lay quietly for days or weeks and then out of the blue a terrible day or few days/weeks would strike and I’d be no good to anyone. They couldn’t quite grasp why at the end of a long work day I didn’t feel like cooking dinner anymore, because I was so worn out. Don’t even mention how long it took them to understand NO, I don’t want fast food in stead of a cooked meal, because it would make me feel worse the next day. I mean to them I looked just like I did a few months ago, what changed so much? I could literally go on about the walls I had to break down just inside my family, and even today I still have to give them little reminders.The good things is we have all had time to adjust on both sides and they get me more and I get them more. But it wasn’t a quick turn-around, it took time.
My friends and family love me tremendously! But they didn’t understand what I was going through, because they didn’t take the time to really learn about MS or what it really meant for me to have it. This disease takes so many forms and no two look the same. If you know someone who has it, you can’t take for granted the next person will be the same and more than likely they will not. Again, the stories I could tell about what someone can do and you should be able to also or what I can now do, why can’t so-in-so do it too. Its crazy! My daughter was diagnosed with MS at 16 years old, her onset was devastating; however after her symptoms chilled and she was on a therapy, she didn’t see another symptom that she ever told me about until she was in her mid-20s. I think everyone assumed that would be the case for me and honestly I was hoping it would be too. But, that was not the case for me. I don’t think my family and friends didn’t want to learn about the disease, but it was more like, “It’s a scary disease and the less we know the safer WE feel.” Some people could say that is selfish, but a lot of times that is a protection mechanism for self. Now, I can’t say for sure that was exactly what was going through their head, but it’s how I viewed it. The unknown for people just seems easier to cope with if you don’t deal with it completely or know every aspect of it. But what it actually does is make the person who has the diagnosis feel misunderstood, unworthy of compassion, depressed, confused and alone on their journey. (Just saying 💁)
Have you ever seen someone park in a handicap parking spot, they have a placard and have every right to park there. Then some random person utters the words “They don’t look disabled.” – Insert confused puppy dog head tilt here 🙈 – I get that quiet often. What a person sees when they see me get out of the car, is someone who looks perfectly fine. What they don’t see, know and clearly cannot understand but choose to judge is I may walk into that establishment just fine, but at any given time during my visit, the walk out could be very strenuous. If you know me, you know I’m not one who cares what the average person who knows nothing about me thinks, so I can blow them off. Unfortunately, there are many others who care greatly what others think of them and that small judgmental look or even sometimes comments, because yes sometimes they actually have the audacity to say something out loud, rips a person up on the inside. Remember earlier when I said we sometimes feel like we are trapped in a prison? This would be another reason we just want to be normal again. No one wants to worry about walking in and out of a store, but for some of us, it’s something we have to consider, hence the handicap placard.
I think I should state here, there are individuals who have more severe cases of RRMS, who are not as fortunate I as was to find a way to gain my functionality back and leave the wheel chairs behind. Due to the severity of their lesions to their myelin sheath (explanation of this in another blog soon to come), they are confined to a wheel chair or use walkers and you can actual see they are disabled. There are also different stages of MS, three others to be exact, and that too is for another blog. But I do not want you to think this is the only stage of MS that exists, but it is the most common stage and most misunderstood.
So as I come to a close, what do you see? What do you know? Have you learned anything? I surely do hope you have! But if not….But if you only take a few things from this blog, take these select tips. 1) It’s very important to take some time to learn about the disease and grasp some understanding of how it is specifically affecting the person you care for AND don’t compare them to someone else who has been diagnosed. 2) Don’t judge a book by its cover when you do not have the answers; what someone is feeling inside may not be seen on the outside. 3) Try to understand we want to be as normal as we once were and we are trying to get to that point, or at least a happy medium. 4) Lastly, I think this is the most important, be patient with the person who’s been diagnosed, we are learning how to deal with this new entrapment for which they have yet to find a cure. There will be good days and there will be bad days. Learn to roll with the punches, much like we have to do! I hope this helps a bit!