Multiple Sclerosis (MS) can often be an invisible disease for some. That means that symptoms are not always obvious by seeing physical constraints or via the use of tools to assist with maneuvering. It can also be a disease that’s hard to explain or that one wants to forget about…as waking up each day, someone with MS may not know whether opening their eyes will result in no sight or if stepping out the bed will result in not feeling one’s foot hit the floor…or feeling one’s entire body at all, for that matter. It is a disability even though I still mentally feel as though I have the ability to do do anything… (because I do) haha
All-in-all, many people with MS deal with things in the best manner for them. Because the disease impacts different people differently, no two people with MS are alike. And even though there are other auto-immune disorders that may have some similar characteristics, this is one that impacts the nervous system and can led to life-long brain changes, body pains, extreme tiredness, numbness, paralysis, urinary incontinence, anxiety, etc.
One of the best things someone can do is to act like they’ve always acted. While it may seem like you are making better strides at showing that you care, it may not be received as such, so don’t take it personally if you don’t get the reaction you were hoping for. One of the easiest things someone can do is to realize that it isn’t about them…if someone wanted to share details with you in another way, they would have. Instead of making it about you, consider being thankful that you were told in their own way and when they are/were ready. One of the worst things that someone can do is to consistently question the person’s condition or make comments like “You look normal” or “You don’t look disabled”…The reason is because even on one’s most uncomfortable day with MS, no one wants to be reminded that they have it. I recall sometimes when I finally forgot that I am having a symptom, and then I’m asked (multiple times) – how are you feeling? but when it’s consistently done, it does nothing but remind me of how I am feeling and ends up being more of an slight annoyance (even though it’s usually asked with all love and respect).
One of the oddest things someone can do is compare your MS to their own situation or someone elses. I don’t know how many times I’ve been told “Yeah, sometimes my ____ hurts too” or “…my leg fell asleep the other day.” Again, everyone is different so talking about how you (someone who does not have MS) feel(s) is not helpful at all. Please do not make someone’s MS about you. One of the most judgmental things one can do is question chosen remedies. Comments like “My cousin’s-boyfriend’s-uncle’s-sister’s-neighbor’s-daughter’s-friend has MS and she uses ___ medicine” or “…have you tried the new drug on the market? I saw a commercial about it the other day.” (while not knowing the name of it, etc.). Many people with MS have had their own journey with medication vs. not. Personally, I flared more when injecting myself with the poison for six months and found it more manageable to consider other holistic remedies instead (thank God I did my research and had a supportive provider). There are other non-medicinal options that work better for my body.
The truth about MS (five things from five years):
1) The tiredness that it sometimes brings is a tiredness out of this world. It has no comparison to pregnancy tiredness at all. In fact, re: pregnancy, what tiredness?
2) I really started understanding what matters in life. For me, it’s freedom, balance, and embracing life outside of my comfort zone. So honestly, since I’ve had to grow in a new way, it’s somewhat become a bit of a challenge for me to have conversations with people who don’t understand. That’s okay though as it’s a part of life’s journey.
3) It’s a love-hate relationship with oneself sometimes: Often wondering why me, what caused this, and/or what does this mean for my future? And ironically, I still wonder if I was misdiagnosed even though it’s clear.
4) Learning what not everyone will understand and that I am selective of who I find solace with…for me, that includes my husband and three other special people. I tell them everything and have never felt the need to be anything other than myself.
5) I was chosen…
I’ve always been the no-one-is-exempt-from-anything type…so while this initially threw me for a loop, I realize that it’s my new normal and that I will continue engaging in avenues that help heal me. From change in diet to dance to enjoying the ocean to herbal medicine to laughter to massages to yoga to reading to loving on my babies (both small and large), the last five years have definitely changed me. I am thankful and blessed. And I am honored that I am able to experience God’s beautiful creations. Thankful even in my newness and will continue to aim for an improved quality of life!