Diagnosis: Now What?
You’ve received the diagnosis. You have multiple sclerosis. Where do you go from here?
Your personal physician will be your first source of information. He or she will try to give you an idea of what to expect, though you will probably be cautioned that each case is different and prognosis is difficult. You will be given information on the various medications currently available and it will be your task to choose.
Making sure that you have a good neurologist with whom you can form a solid doctor-patient relationship is your first priority. Take steps to ensure that your neurologist and your primary physician are each aware of all treatments and medications.
Beyond that, you must take it upon yourself to get an education in MS and become your own advocate. Books, peer groups and reputable websites are all good sources of information. Do be careful and check your sources. Don’t fall victim to misinformation or magic cures. Unfortunately, there are those who would take advantage of the confusion and desperation of MS patients.
Something it has taken me almost four years to learn is that you absolutely must communicate with your fellow MS patients. Multiple sclerosis is a disease which will play mind games with you if you allow it. If you isolate yourself and if you deny your MS, you can easily convince yourself that you are alone in the odd symptoms you experience. You most assuredly are not.
You must also be careful not to separate yourself from family and friends. MS can sometimes be invisible to the casual observer. Others may be completely unaware of the struggle you feel on a daily basis or how difficult it is for you to manage your day. You don’t have to go into great detail, but if you are fatigued or having physical difficulty participating in a chore or an outing, just be honest. Decline the invitation. Ask for assistance with the chore. Otherwise, your loved ones could misinterpret the situation, leading to hard feelings. If you do require assistance from family members, don’t forget to thank them for their efforts.
A word on guilt. Personally, I’ve yet to overcome this challenge. Intellectually, I know it’s not my fault that I have MS. I did not bring this upon myself or my husband. Emotionally, though, I can’t shake the guilt I feel for the challenges he faces as a result. There are many of us with MS struggling with this issue.
Most importantly, accept your diagnosis. It is what it is. Now you are free to work with the hand you’ve been dealt. Free to rise to the challenge. Free to make important decisions about your health and happiness. Free to put yourself in the driver’s seat.
Mandy wrote for HealthCentral as patient expert for Multiple Sclerosis.