By: Margaret Blackstone
Parade. New York: Oct 12, 2003.

Copyright Parade Oct 12, 2003

I have multiple sclerosis. You may also have MS, or you may be coping with another autoimmune condition. One thing we will have in common is the disorientation we feel while doctors are trying to make the right diagnosis. For most of us, the process is a slow one. It may take months, even years, to be diagnosed correctly. During this time, we need to ask questions, but the questions often have no direct answers and may even be impossible to formulate adequately at first.

If you are going through this frustrating period now, the best things you can do for yourself are to rely on those you trust, get plenty of rest and keep yourself occupied with positive activities, including meditation or other means of relaxation that allow you to keep your mind free of fear or panic.

After You're Diagnosed

Try to think of this as a door being opened, not closed. Of course, you'll have periods of grief for the "old you," but sad is not bad. Sad is what you go through as you grieve that some things in your life will change, and you may not have a lot of control over how they change. For your sake and your health's sake, try to approach this new chapter in life as a challenge, not as a defeat.

Sharing Your "News"

Tell who you need to tell, but don't tell everyone. After I had endured a long diagnostic process and calmed myself down, I wondered whom to tell and when to tell them. It is not as simple as saying, "Tell your family first." You need to tell your spouse or partner and very close friends for unwavering support. If your children are young, tell them the facts calmly and simply. If they are older, share information during the diagnostic process, because they'll know that something is up.

As for your job, choose what you want to say and when. Above all, if you suspect that there will be repercussions at work, remember: You are not legally bound to tell your boss.

Getting The Best Care

Whatever your treatment regimen, it helps immeasurably if you put together a helpful health-care team. I have found that working together with my internist and my MS specialist has vastly improved my care and cut down on the time I spend in doctors' offices. For example, my blood must be tested periodically. My internist draws the blood and sends the results to my specialist; as a result, the blood work does not have to be repeated. It's easier on my arm, my mind and my time.

Living Well

The only real invalid is the person who thinks she or he is one. I take nothing away from anyone's real suffering by saying this. I simply mean, if you can't completely put mind over matter, you can at least tend your mind.

Respond to your own needs; do not postpone them. To that end, remind your family that you love them but that, for now, your health is the top priority.

Above all else, you need to remind yourself that you are still you, as good and as important an individual as you were before your diagnosis.

Margaret Blackstone is the author of The First Year---Multiple Sclerosis: An Essential Guide for the Newly Diagnosed (Marlowe).

Reproduced with permission of the copyright owner. Further reproduction or distribution is prohibited without permission.