For the past few months, I have heard multiple people tell me that there is no way I could be sick because I
"look so good."
Those words really infuriate me.
I love that I am able to have an outer image that makes others question the devastation of an illness and provides hope to those who need it. However, the most difficult part of getting others to understand an invisible illness is to convey to them, physically, how such an illness can completely shatter a life. Sadly, this is something I am currently enduring professionally.
I wake every single morning terrified that I will not be able to get out of bed. I go to sleep at night with fears that I will not be able to see or hear in the morning. I'm absolutely horrified that MS could creep in and prevent me from walking down the aisle in December. No matter the fears, however, in the back of my mind, I know that whatever happens will be just another stepping stone in my journey.
My poor fiancé has to cover himself with multiple layers when he is in bed because our house is set at a brisk 68 degrees. He does all of this because he knows the importance of regulating my body temperature. I hate that this happens. It's not fair to him, but he does it because he loves me.
I still have a hard time understanding how someone could love another who is broken.
To him, I'm not broken. I'm perfect.
Wow.
The most heartwarming fact to me, however, is the overwhelming support I have from those who love and care about me. Even now, I do still struggle with how MS can affect those around me. What I struggle with and endure daily is a direct issue for myself. Caregivers and children, however, must endure the disease indirectly, and that, in and of itself, can be undeniably overwhelming, terrifying, and lonely.
There is an old post of mine, "From the Outside Looking In", that I feel is vitally important in any MS journey.
"Before my MS diagnosis, I was a selfish, cruel, and unpredictable human being. Though my family has always been undeniably important in my life, for a couple of years, I was purely concerned with what I wanted. Period. No one else seemed to matter to me, and to a certain extent, during that time of my life, I was okay with that.
Often, when an individual is diagnosed with MS, talks about
how he or she changed, how he or she handled the diagnosis, what he or she
was/is scared of, etc. are constantly at the forefront of many conversations.
What many fail to realize is, although one person is diagnosed with MS, the
diagnosis affects more than just that individual. Although MS does not have me,
I have MS which means that those I am in constant contact with also must endure
the disease, as well. Often, the feelings of those who are indirectly affected
with MS seem to be pushed aside. It is in my experience that these “other
individuals” have lives that change, as well. They may not have MS. They may
not have to directly endure the daily struggles, fears, pain, anxieties of MS,
but indirectly, their lives can change as much as the life of their loved one,
spouse, significant other, family member, friend, co-worker, neighbor…
It is incredibly important that the voices of those affected
with MS are heard. Those affected with MS are more than just the individual
with the disease. I believe it to be extremely important to understand how an
outsider looking in – friends, family, significant others – feels about how the
disease has affected me, what they are scared of concerning MS, and how they
feel about the disease in general. [My big brother is the first man I ever loved. He taught me about strength and determination and perseverance. He showed me that it is never okay to give up. More importantly, he showed and proved to me that those who love us will never leave us during times of struggle, uncertainty, and fear. I wholeheartedly believe that he is the main reason why I am still here today. His words radiate through me every single day,
Desireé, you do not understand what is going on right now, and that's okay. What you are going through - every single aspect of your life - is preparing you for something much greater. It's okay that you do not know what you are being prepared for. That means you have to hold on to faith and hope. There is a reason for everything you endure. If you want to be mad then be mad. If you want to cry then cry. If you want to give up, guess what, I won't let you. I will be here every step of the way to make sure that you keep looking forward and you keep fighting because you are strong. I believe in you.]
My brother is a 33 year old husband and father of two. He is
immensely intelligent, captivatingly charming, and highly protective of those
he loves. Throughout my struggles, he and I have gotten closer. He is, by far,
one of my strongest support systems, but I never truly knew how my MS diagnosis
changed him nor did I realize how strong he has been for me during my
struggles…
1)
How did you feel when you heard the news of
Desiree’s MS diagnosis?
Helpless. I have always been very protective of my sister. I can still
remember incidents from our childhood of bullies trying to pick on her
resulting in my angered retaliation on her behalf. But with this, I for the
first time felt like I couldn’t protect my little sister and it was the worst
kind of feeling I could have.
2)
What are you scared of concerning MS?
The pain my sister has to endure. The unknown and even mortality have
never truly scared me as much as having to stand by and watch my loved ones be
in pain. Every time I hear of another issue that causes Desiree pain, I sit and
pray that [somehow] I might be able to take her place so that she might find
some relief. I still pray that prayer today.
3)
How has Desiree’ changed since being diagnosed
with MS?
She has become tempered steal. Not cold, but strong beyond measure. Just
like the tempering of a sword, she has come through the fire a stronger and
more brave woman. It’s a change that I am thankful everyday she has gone
through. I just wish it could have come under better circumstances.
4)
How has the diagnosis changed you?
I have redirected my personal development to become as strong and
courageous as my sister. She has become one of my most important role models
and a living example of some of the most important characteristics every good
person should strive to possess.
5)
What would you tell others about being a family
member/friend/significant other of someone with MS?
Stay strong. The world [may] seem like it is crashing down around you and
that you are losing someone you care deeply for, but the fact is that having
faith and courage during times like these can be better therapy than anything
modern medicine can develop. The therapy of a good support system is
immeasurable and invaluable. Also, be informed. It is absolutely true that
knowledge is power. You cannot be a truly supportive person without having the
knowledge of what is happening. Finally, don’t forget to love. There is no
emotion within the human experience stronger and with more healing power [than]
love. Become the medication your loved one so desperately needs.
6)
What is your wish for Desiree’ when continuing
her life with MS?
That
she never loses her strength, courage, and faith. When we give up or give in,
that is when life begins to take a turn for the worse. As long as we remember
what we are living for and have faith that the trials we are enduring have been
put in place to prepare us for something much greater then we will always
succeed.
[There have been so many times when the emotional anguish caused by MS has taken its toll on me. I am a strong woman, but I am far from perfect, and I am okay with that. Randomly, I would start thinking that MS is my struggle and should not be a struggle for anyone else. I've told myself countless times that I would not wish this disease on my worst enemy. Telling my fiancé about MS was one of the hardest conversations I've had. I was falling madly in love with him which made telling him about the struggles I was enduring with MS that much harder. He did not ask to fall in love with a woman who is ill. He did not ask to go through the ups and downs that Multiple Sclerosis brings. However, even after telling him about MS, he chose to stay. Chris is my dream come true. My happily ever after. My knight in shining armor. My soul mate. When I feel like taking a step back to dwell on my MS, his words keep me from giving up, You aren't broken. You're perfect. I will be here every day making sure you know that you are loved and making sure that you know that there is a man, standing right here, willing to do everything he can to take away all the hurt and pain you go through. I may not be able to take MS away from you, but I am able to make you the happiest woman alive. I may not be able to make MS disappear, but I am able to prove to you that my love, my support, and my strength can protect you, nurture you, and save you from pain. When you hurt, I hurt. When you cry, I cry. When you smile, my heart smiles, and I am content.]I met Chris at work. In the beginning, I was merely captivated with his genuine sincerity. I had no intentions of trying to start a relationship due to an ended marriage that contained nothing but abuse, fear, and turmoil. However, in a short amount of time, I quickly learned that Chris was unlike any other man I had ever known. His arms are like a shield for me. I’m protected and unconditionally loved. When I explained to Chris the MS, I could tell that although he was being supportive and understanding, he was scared and confused. He has seen me at my best, celebrates my triumphs, has seen me in a shattered physical state and picks me up when I fall. Before Chris, I never really understood what it meant to be loved unconditionally. I know that with him, my aspirations will become a reality, and I know that our two lives have become one.
1)
How did you feel when you heard the news of
Desiree's MS diagnosis?
When Desiree told me that she had MS, I was first scared and even more so
worried for her and also us, as we were just starting our life together.
Wondering what would this mean for our relationship and our future together. At
the time I had next to no knowledge about MS and how it was or could affect
Desiree. It was very emotional to hear everything that she has been through,
overcome, and was currently dealing with on a daily basis. All I wanted to do
is hold her, and make everything better, if I only could.
2)
What are you scared of concerning MS?
I am scared that this horrible disease will take away Desiree from me as
I know her, however I try not to think of it in this matter and be thankful for
every day, hour, minute, and second that we get to spend together doing things
that make us happy.
3)
How has Desiree’ changed since being diagnosed
with MS?
He is unaware of how I was before the diagnosis. Although I have
explained to him the person I used to be, he continually focuses on the person
I am today.
4)
How has the diagnosis changed you?
Since learning that Desiree has MS, I would say that I look at life
somewhat differently. I try to be more aware of my surroundings, activities and
the risks I take doing so, not only knowing how the outcome would affect myself
but the woman I love.
5)
What would you tell others about being a family
member/friend/significant other of someone with MS?
That you cannot dwell on what might happen, but to enjoy today and be
thankful that you have today.
6)
What is your wish for Desiree when continuing
her life with MS?
That
she is able to continue to pursue her education, career path, and starting a
family. All while she is controlling this horrible disease and not letting it
control her" (Cook, 2013).
I am constantly trying to find new ways to help those in my life, my family and friends - ultimately, my caregivers - endure Multiple Sclerosis and its indirect impact it has on them to be a little easier.
I have been able to find an amazing guide to give to friends and family members who may need additional support.
A Guide for Caregivers
Radford (2011) explained,
It is easy to feel invisible. Everyone's attention goes to the person with MS and no one seems to understand what the caregiver is going through. Many caregivers say no one even asks. Mental helth experts say it's not wise to let feelings of neglect build up. Caregivers need to speak up and tell other people what they need and how they feel (p. 5).Quite possibly, children seem to have the hardest time understanding Multiple Sclerosis because they cannot see it. I have found some amazing newsletters specifically designed for children and have been blessed to find videos, as well.
A newsletter for kids about Multiple Sclerosis
This is a quarterly newsletter published by the National Multiple Sclerosis Society. I highly recommend it to parents who have MS to be able to explain the disease to their children in different ways. A letter written by a young girl was sent to the editing staff of the newsletter. Her words are spot on, and I believe other children will be able to understand where she is coming from.
Hi, I am Ariana and I am 11 years old. I have a great dad with MS. I know it is hard to have a dad with MS, but it has a good side too. My dad and I have so much in common - we both love basketball, and we love other sports too. I love him so much no matter what he has. He will always be the nice, caring, and funny dad I know on the inside.Additionally, there are three videos I have found that do a wonderful job explaining to children what MS is, what happens in MS, and what a relapse is.
Ariana
P.S. I have some advice for kids whose parents have MS. My dad has had MS for awhile, and I've learned how to adapt to that. I've talked to my dad about MS ever since I was little, and have learned a lot about it by just talking to him. My friends have always comforted me too. All you have to do is find a quiet place for you and someone to talk about MS and how you feel (Ariana, 2007).
Despite the uncertainty that MS can bring, never forget that you are not alone, and we are all in this fight together.
References:
Ariana. (2007). Ariana's story [Letter to the editor]. Keep S'myelin, 3.
Cook, D. (2013, January 31). From the outside looking in. [Web log comment]. Retrieved from http://movingforwardwithms.blogspot.com/
Radford, T. (2011). A guide for caregivers: Managing major changes. Retrieved from http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-A-Guide-for-Caregivers.pdf
