How Family members and Relationships are Affected by Multiple Sclerosis
If you spend just a moment thinking about it, there are many differences faces of MS. Those persons who are diagnosed with multiple sclerosis are not the only ones who feel the disease, as those around us who share in this experience. Many different faces representing the MS community at large.
It’s easy to look at our MS diagnosis through our own patient’s eye. Face it, the vast majority of our community is made of up people who have been diagnosed with MS or are in the process of getting diagnosed with MS or some other neurological disease. We share many of the frustrations of living with disease and the successes we have along the way. Sharing is rather therapeutic, I’d say.
But how do our loved ones - parents, siblings, boyfriends, friends, or caregivers - view MS in our relationships? Exploring these often forgotten Faces of MS, I will be interviewing people around me. Asking the questions which I may not know the answers to, I expect to learn something about them, the disease, and about myself in the process.
Please welcome my mother to MS Central. She is no stranger to autoimmune disease, living with a couple of her own although she does not have MS. We share a house in the Washington, DC, area and have grown from relatives to friends during the past 10 years. My mom was with me at most of my doctor’s appointments during and after the diagnosis.
The morning I woke up not being able to see in 2000, you jumped into "mom mode" and you cancelled your day to take me to three doctor’s offices and one orchestra performance. I’m really thankful that you did that for me because I was truly an emotional wreck.
Before the neuro-opthalmologist used the words ‘and maybe multiple sclerosis,’ what did you know of the disease? How did you go about learning more?
I had heard of MS because a distant friend of your Dad and mine had been diagnosed in his mid-20s, and he went on disability. I didn’t know anything of the nature of the disease until Dr. Katz explained your blindness was caused by optic neuritis, and a study showing taking high doses of prednisone with optic neuritis reduced the chance of developing MS within 5 years by 27 percent. I remember he wanted you to have an MRI to look for any signs of MS, which we did right away. Good news, no white spots.
I searched online and found the study to which Dr. Katz referred and learned you were the typical patient with first occurrence of optic neuritis: female, 31 years old, no earlier occurrences. I read information about MS, but I don’t think I had a real appreciation of the disease and what it could mean.
As you learned more, what thoughts ran through your head? How long was it before you stopped thinking about the possibility of MS?
Dr. Katz had explained that you would likely not develop MS. Other than the little research I had done, I didn’t worry you’d develop MS. Maybe it was a mom’s refusal to believe you’d be on the wrong side of statistics?
In 2005, the doctor called me at home to refer me to a neurologist soon after receiving the radiologist’s report following an MRI of my neck. As soon as I read the report, I knew that I had MS. But it took the neurologist three months to make that declaration.
As a mother, what did you wish would happen during that time?
I also felt you had MS, and I wanted you to be treated! I was very impatient with how long it took to get a diagnosis because I felt that time delayed provided opportunity for more damage without treatment. But I also observed that the doctor was being methodical in the approach. I understand that diagnosis depends on “multiple” events, but I often wonder had it been the doctor’s wife or daughter if it would have taken as long to diagnose.
My life has changed a great deal since my diagnosis. Our lives have changed. What about the disease has made the greatest impact on your life? How do you deal with that?
After you were diagnosed, I wanted to “make it better” like any mom. But realizing I couldn’t, I was extremely sad and felt the best thing I could do was just be supportive and be there for you. I felt I had a unique understanding of chronic disease with my own and an understanding of the emotional stages you would go through over the next few years. But I also realized I was 45 years old when diagnosed with lupus and already had my children. You were so young, I felt your future and dreams had been stolen from you.
Here’s a question which we MSers sometimes ask ourselves. Let me ask you. Have I changed in any noticeable way since developing MS?
Lisa, you have changed tremendously! I am so proud of who you’ve become. I’ve watched you become a very strong woman, generous with yourself, and unafraid to let people know who you really are. You have struggled with so many challenges with which most people never have to deal: the disease itself and what it does to you physically and emotionally; the horrible financial burden watching your hard-earned savings quickly drop and figuring out the system and how it is so broken; changing from a rather quiet, shy person to a confident, open young woman. I hate the disease, but I love you and who you’ve become.
What else might you like to share with the community today?
I appreciate that you have a community that understands and through which you can share and be supported in return. I wish the best for all those MS patients, their caretakers, and family members who love them. I always want to be there for you and pray for a cure for MS.