Although I am only halfway done with the first book I picked up on MS and cognition, I am now reading a book about MS and feelings. It was written by a counselor.
There are some homework assignments in the book, and this is the first one. I am supposed to answer these questions in a notebook or journal and discuss them with my significant other. My what? Whatever, I do have a journal.
1. When you were first diagnosed with MS, how did you feel?
Anxious and scared. Mostly anxious. I was so worried about not being able to work. I worried that I would be in a wheelchair. I worried that I wouldn't be able to do things I love, like skiing.
2. Have your feelings changed since you first heard the news?
Yes. I am less anxious. I am more lonely. Maybe more scared. I still worry that I will not be able to do things I love or to work. The work thing is more about my cognitive problems than physical, though. Pain weighs heavily in my mind lately. If I feel this way for the rest of my life, I will scream. I also feel angry lately. I am not sure why I am angry or if it is directed at something.
3. What were some of your concerns or fears after initially being diagnosed?
How much longer will I be able to work? What treatments are available? What will I do if I can't work but I need these expensive medications? Which medications will help me? Is my doctor skilled? Is she right? Will she be able to treat me and help me get better?
4. What questions did you have?
What causes MS? What are the symptoms? And the worried questions above. Lots of questions about money and medical logistics. And questions about the disease itself.
5. Did you want to talk with others about it?
Yes! I wanted to talk with many people about it. I became more social than ever.
6. How did others respond to learning that you had MS?
Different people responded differently. I had just moved, so I was in the unusual position of making friends while going through the diagnostic process. My new friends did not know me before MS--the "real" me. Obviously they still don't. They responded well, offering rides and company at doctor appointments. That is all over though. MS is an exhausting, daily battle... Who would want to stay in it if they didn't have to?
I have not told my mom. She will tell everyone, and it will get back to people I work with. I cannot trust her to keep it to herself, so I cannot tell her.
My dad took it fine. He wrote me a prescription when I needed it. He questioned it at first, but not in a way that conveyed disbelief of my experience.
Some people who have known me for a long time have avoided it, and some have expressed shock and sorrow.
My best friend, whom I have not seen in about three years, was angry. Shocked. Sad. She already knew about MS (unlike me), so she knew how bad it could be. Actually, I do not think she did know how bad it could be. I now feel that severe pain is the worst outcome of any experience, and I know that people are unaware of the degree of pain possible with MS. But this friend knew enough.
My sister has distanced herself from it and from me. She does not ask questions, and she responds noncommittally to comments I make.
My other best friend did the denial thing, I think. She "forgets" that I have it, expecting me to do all the things I normally do for her. I am not a big whiner, telling her how much pain I am in all the time. I told her a few times--I think that should be enough. My MS has not gone away.
A good friend from work responded very well. She makes sympathetic comments and notices when I look sick. (Although I did not think I look sick.) She is great for emotional support.
So there you go. I did my homework.
