How to Live with Multiple Sclerosis (MS)

In early June of 2005, I spent six days in the hospital at UCLA Medical Center. I spent the first 48 hours in the Neuro ER, waiting to see if they were going to do brain surgery. I had been having a loss of sensation in my lower legs, and assumed it was due to another condition I have called Hydrocephalus.

UCLA is a teaching hospital, so you are poked and prodded by numerous medical students. I had the pleasure of having the chief resident of Neurology tending to my case. It is never good thing when both the chief resident and the chair of the Neurology department come to see you.

"You have MS"

Three little words. Actually, two words and a set of initials. And my life would never be the same again.

"No, I don't." Denial is standard in any chronic illness diagnosis and it would be another two months before I even considered that I may actually have MS.

When faced with the indisputable evidence that yes, I did indeed have MS, I accepted that my life would have to change. I am by no means an expert on this disease, but I am an expert on Melissa Lee, and I know what I have had to do to come to grips with Multiple Sclerosis and what it means for my life.

Here are the things you must do to live with MS, but more importantly, yourself.

1. Accept that even though you look perfectly fine, you're not. MS is a silent disease that will leave you exhausted a lot of the time. No longer will you be able to pull an all nighter and bounce back with a quick nap. Not gonna happen. And that's ok.
2. Allow yourself to be angry at the universe for giving you this disease. However, do not wallow in your anger. It takes too much energy, energy you don't have.
3. As with the anger, it is OK to feel sorry for yourself sometimes. And as with anger, don't wallow or become consumed in your misery. Misery takes as much energy as anger.
4. Acknowledge that there will be days when your fine motor skills aren't working, and you may have to ask for help. It is a humbling experience to have to ask a co-worker to open a packet of dipping sauce for your Chicken McNuggets. And that's ok. It has to be.
5. Learn to say NO and be selfish. It is perfectly fine for you to not accept every invitation or request you receive. People will either understand, or they will not. And there is nothing you can do about what other people think, so don't even try!
6. Mourn the loss of your old life, but celebrate what you do have. If there is ever a good time to be diagnosed with MS, it is now. Thank the universe for letting you "get sick" today and not 15 years ago when there were no long term MS treatments available.
7. Know that accepting that you have this disease is not a one shot deal. You will accept that you have MS today, and again next week. And probably the week after. And that's ok.
8. Live your life. Yes, you have MS and yes, it sucks. However, walk, talk and work for as long as you can and concentrate on the here and now, and not what the future may or may not hold. As cliché as it may sound, we really don't know what the next moment holds. So continue to live your life the way it was, as much as possible, for as long as possible.
9. Believe that no matter what happens, you will be ok.
10. Do not allow your MS to define who you are.

My name is Melissa and I have MS. Who I am is no different today than the day before I was diagnosed. The only that that's changed, is that now there is a name for why my body sometimes feels the way it does.