Talking to My Parents About My MS Diagnosis
There is nothing worse than being diagnosed with a disorder that you know nothing about.
While it was extremely difficult for me to take in, my parents also were affected. I had never thought about how my parents felt about my multiple sclerosis (MS) diagnosis and what I have had to deal with for the past seven years. So, I decided to sit down with them individually and ask them a few questions to get their perspective on my situation.
Interviewing my mom
From the beginning, my mom has been by my side. She has seen all aspects of the disorder and how it affects me. When I moved back home, my dad got to see some of what I go through, as well. It hasn’t been an easy journey, but I am thankful they both have been there for me.
Excerpts from our conversation follow:
Stephanie: What do you know about MS?
Mom: It’s autoimmune and it’s crippling. That’s it.
When I found out about my diagnosis, how did it make you feel?
It made me feel like I did something wrong. I thought that whatever I did while I was pregnant with you is what caused this.
What is the hardest part of having a child with MS?
Watching them suffer and not being able to do anything about it. There are numerous times where I have felt helpless.
What advice would you give someone whose child has been diagnosed with MS?
Take advantage of clinical trials. This is not a death sentence. And learn that it’s not anyone’s fault. Also, be patient.
***
My mom then elaborated on something that made total sense. She said that there is no outlet or support for parents of children who suffer from MS or any other disorder. She feels that the diagnosis isn’t easy on the parents, and sometimes they need someone to talk to about the situation.
Interviewing my dad
Talking to my dad was very interesting because I had never asked him before about my disorder and how he feels. Excerpts follow:
Stephanie: What do you know about MS?
Dad: My daughter has it and it affects the central nervous system. It can be debilitating, but it’s livable with the right treatment.
When I found out my diagnosis, how did you feel?
Sad, very sad. Like, I couldn’t believe it. I just couldn’t believe it. It was shocking.
What’s the hardest part about having a child with MS?
Wondering if she is going to be OK for the rest of her life.
Do you wish you were more involved in the beginning?
Yes, in the beginning, but I was scared. I wanted to know and be involved but I didn’t want to know. I just kept telling myself that you will be OK.
What advice would you give someone whose child has been diagnosed with MS?
Be proactive and involved since day one. Learn more about it and be knowledgeable and aware.
***
My dad then talked about how my MS isn’t that bad and he doesn’t think it’s going to stop my life and activities in the future. He knows I have been on my treatment since the beginning and that it has really made a difference with my MS.
Acknowledging their perspective
This really opened my eyes to how hidden I have tried to keep my MS. My dad is the type of person who doesn’t want to see his child in pain, so he doesn’t really go to the doctor’s appointments. I respect that. My mom has witnessed all aspects of my disorder. She has watched me suffer and cry. My dad expressed being scared in the beginning. I may not have told him, but I was scared, too.
Think about your parents and family members. Talk to them, get their opinions, and answer their questions. Many people are unaware of MS. Educate them about your medications and how you deal with the pain. It was effective for me, and I believe it can be for you, too.
***
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Jamie
My daughter was diagnosed with MS over two yrs ago and till today refuses to speak to me, refuses to have a relationship with me and only insist I give her space and time. I honestly do not know how long this time will be. It scares me, that the more time I give her, the more she slips away. Talk about a mother in pain, I've had sleepless nights, cried day and nights, it's been very heartbreaking but I learned that I too have no choice but to move on. I can't let myself deteriorate, what help will I be when and if she decides to reach out. I wish she never had MS, I feel so useless and hopeless. I understand when she saids this is about her and not me... but this didn't only happen to her, it happened and it still is happening to me too.
Broken Hearted.
Ashlyn
This is a good inside of how your parents feel. As a parent you always want to protect your kids. This shows the inside of your family. It’s good to see that most parents would be in your parents shoes. Great post.
David Gregory
Our story is about our mothers struggles with ms. She has had ms for over 15 years . It started slowly and it has progressed to her being in a wheel chair and slowly losing pretty much all her strength. She has recently had sores on her feet that are still healing. and she has had all her bowels redirected direct . She now is pretty much unable to do anything , she can move her arms but she says its very sore . It hurts her for us to move her. Please if any one has any advice it would be greatly appreciated. Just real hard trying to do whats best , thanks