What do you know now that you wish you knew when you were first diagnosed with multiple sclerosis? As I think about this question, I have to think back to when I first learned I had a disease. I was diagnosed in 2012 with relapsing-remitting MS. I was relieved at first mainly because I finally had a tangible answer to the mystery of what was going on with my health for years.
As the first days and months progressed, I realized just how bad things could become for me. I started to panic and become overwhelmed with all the possible outcomes. It was terrifying, and the fear kept me up many nights. I felt isolated and really alone. It was not like I could talk to other people with MS because there just were not that many people around me that suffered with the same affliction. My son was a major concern as well. I’ve raised my son with little support from his father for a number of years. The thought of my son having to move or watch me suffer was really horrifying.
I think I wallowed in self-pity for months. I did not want to go places or experience life because I was afraid of what MS would do to me. I felt like my body betrayed me or I did something wrong. Maybe the universe was conspiring against me. I’d pray every day that I’d get through this, but I felt very alone and small. I was worried about telling people because I thought they would judge me harshly.
The first time I had to get a disabled placard I felt really self-conscious. I remember my dad was with me in the car at one point. I was not going to park in the handicap space. My dad looked at me and asked, “Why are you not parking in the handicap? Just park there!” He pointed out the space. So, I did! As time went by, I became less self-conscious about parking where I needed.
It took about a year before I realized I was not going to die. I started relaxing a little. I realized the best way to not be afraid was to be open about what I was going through. There is no darkness when the light is shining bright. I decided to be open, honest, and upfront about MS. It was freeing in a real sense.
It’s not one thing that I wish had known when I was diagnosed, but many things. For me, feelings and how I viewed the world had to change in order for me to live my life in the best way I can. It had to shift from “everything is a challenge” to accepting that some things are not easily fixed or mended. I would tell myself to learn to live comfortably in my own skin.
The world is not going to fall apart because of the disease. It’s OK not to be OK. Don’t stretch myself too thin. Allow myself not to worry about the small things. If the house is not as clean as I want it to be, that is OK. I’ll get to it. If I need a nap, take it. No one will care. If I don’t want to run errands, figure out what is most important and prioritize. I’ve also learned I’m not bugging people if I ask them for help. Go to therapy when I need it. Therapy did help me a great deal with what I had and gave me tools to help cope.
I have learned not to take my health for granted anymore. I do what I can when I can. The rest will take care of itself. I can’t worry about things as much as I used to. It is just wasted energy. I still have days that I struggle. When I do, I just try to remember I am not made of steel. I am only human. It really is OK not to be OK. People will step up when there is a need. My family and friends do care about me and will help. I’m not the only person in this. Leaning on people gives them the opportunity to step outside of themselves and contribute. Regardless, I never give up on myself. I am strong and resourceful. I will get through each day with grace, and I have faith. When things seem to fall apart, I have my faith in Christ to lean on as well. I used to think MS was a curse. I’m learning it is something I have, but I have the opportunity to rise above it. I’d be letting myself down if I gave up!
We are living in a great time for medications to help with the disease as well. It’s not perfect and it takes time to find the right medication. But with the help and perseverance of my doctors and healthcare workers, I was able to obtain the medications I need to help me.
I have to say that finding the MyMSTeam website has given me a gift. I can connect with people who have this disease. It’s incredibly helpful. I see the posts and faces of people that are from all backgrounds. They struggle and they have real-life problems just like me. I try to support people with kind words and a quirky sense of humor. There is support out there for us. We just have to reach out and be ourselves.
This article was written by MyMSTeam member Christy Roney as part of a Member Spotlight Series. Christy has been living with relapsing-remitting MS since 2012, is mother to a teenage boy, and is a dog lover.
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