Hello Nicole - April 2000

Dear Nicole,

I have been newly diagnosed with MS. I have been fighting this disease a long time without diagnosis, and it’s got me to the point now that it’s dangerous to walk. I am having trouble accepting the walker and future right now. My family is getting impatient with me. Any advice to get me on track would be appreciated. I know there’s a lot of people worse off than I am.

Sincerely, MS

Dear MS,

Thank you for the honest letter. Of course you don’t want to accept the walker and future. I don’t think you are “off track” at all for wishing things were different.

While it seems logically true that there are people worse off than you are, the emotional truth is that there is never anyone worse off.

To each of us, our own suffering feels the worst. Your suffering is the worst for you; my suffering is the worst for me. When we deny or belittle our suffering by comparing our situations with others “worse off” all we’re really doing is being harsh with ourselves and saying, “See, you should be happy! What’s wrong with you?” It would be more helpful to be kind to yourself and realize what you are going through is really hard! Then instead of shaming yourself, you can give yourself a break and give yourself credit for dealing with such a difficult situation.

It takes a long time to integrate a disability into our lives. I have been disabled my entire life and it’s still disappointing sometimes not to be able to do “ordinary” things. Living with a disability is hard, it’s inconvenient, it’s frustrating and it’s scary. I think we expect too much of ourselves if we believe that after a certain amount of time we’re supposed to be levelheaded and reasonable about accepting our disability and all the things we cannot do. Eventually, life with MS will probably get a little easier to bare. You will grow and change from this experience in ways that you cannot imagine now. However, this integration process needs a lot of patience. If we try to force ourselves to “accept” before we are ready it will just make us feel more angry, out of control and isolated.

Unfortunately, just as you can’t force yourself to hurry up and feel better, your family can’t force themselves to be patient. It’s really hard for our loved ones to see us struggle and suffer. Probably the reason your family wants you to “accept” your situation quickly is so that they can relax and feel like you’re going to be OK and life will take on some predictable normalcy. There’s nothing wrong with your family wanting that, however, it is not realistic to expect that you can simply comply. Express your need for patience with your family in as calm and loving a way possible. Let them hear that you understand this is very hard on them. Tell them you wish you could hurry up and feel OK too! It’s so important that you keep the lines of communication open during this process. It may be that some family members are misinterpreting your emotional state and thinking you don’t love them the same anymore. Make sure you understand where your family is coming from before you react when they say things you hear as insensitive or impatient. Likewise, do you best to be honest about what is bothering you, moment to moment. Make sure you apologize if you accidentally treat someone unfairly while you are in the throes of this turbulent adjustment process explain as best you can what is really bothering you.

If you haven’t already, getting a lot of outside support would be helpful. You need a place to vent and cry and share what you are going through with people besides family members. I suggest leaning as much as you can on a support group, caring counselor and friends.

—Nicole

If you have feedback or questions please e-mail me at hellonicole@yahoo.com