How Should I Tell My Parents That I Have MS?

Question: How Should I Tell My Parents That I Have MS?

I was recently diagnosed with MS. My mom knew I was feeling a little "off" and that I was going to see the doctor, but she has no idea that I was referred to a neurologist, who then told me I have MS. What should I do? I want her to know, I need her support, but I am afraid that she is going to "freak out" and cry. She recently saw Montel Williams talk about his MS on Oprah and will assume that my case is just like his. How should I tell her, so that she remains calm and doesn't stress me out any more than I already am?

Answer: My mother passed away before I was diagnosed with multiple sclerosis (MS). Losing my mom left a huge hole in my life (and my heart) and I certainly could have used her love and support during the stressful period when I was getting diagnosed and immediately afterwards. However, if she had to go, I am glad she was spared the knowledge that I have MS.

My mom was probably like many moms out there in that she would much rather take on any amount of suffering than see her children exposed to any sort of discomfort or stress. I guess I never appreciated how deep that feeling ran until I had my own children. It’s an amazing thing – I inject myself every day with Copaxone, however, seeing my own children cry when they get their yearly flu shot has me weeping along with them.

So, given the nature of relationships between most children and their parents, many newly-diagnosed people wrestle with how to go about telling their parents that they have MS, knowing that it will cause them pain and anxiety (as well as probably intensifying any existing dramatic, stirred up feelings that the newly-diagnosed person is trying to deal with).

I have a couple of recommendations:

Be Patient

Your parents may or may not be aware of the diagnostic process that you have been through, depending on how much you have told them. Regardless of their level of involvement, unless they were in the room when the doctor said the words “multiple sclerosis,” they will most likely be shocked by your news, much as you probably were. They may go through the same process that you went (or are going) through: disbelief, panic, fear, imagining the worst-case scenario.

Also, think back to what you knew about MS before you were diagnosed. I, for one, knew very little, but had a lot of misconceptions. Yes, Montel Williams will probably be mentioned. Yes, you may have to explain that you will not necessarily end up in a wheelchair. Or die. In fact, it is pretty likely that you will have to dispel many MS myths before you can calmly educate your parents about MS, what current treatment options are, and what your future might hold.

Try to be patient. They don’t mean to get your cortisol flowing with recommendations to take vitamins or “rest more.” What they really want to do is to pick you up, snuggle you and make all the nasty MS stuff get off their baby. They can’t do that, so they are doing the best they can.

Let It Be “Their” MS, Too (For Awhile)

Yes, I know that you feel terrible. I know that you hate MRIs. I know that it’s not fair that you have to give yourself a shot every day or suffer side effects from medications that are supposed to help you. However, your parents are suffering, too, thinking about all the terrible things that people think about when they hear MS (and probably some extra stuff, too, since you are their child and they are worried). I know you hurt, but let them “own” some of your MS for awhile, let them tell you that they are upset and scared. Try not to say things like “you’ll never understand.” They are trying to do just that.

Their Response May Surprise You at First

On the other hand, your parents may shock you. They may be calm and rational. They might have a friend who is their age that has MS and is doing great and assume that you will be the same. They may keep a stiff upper lip and show absolutely no emotion while they are talking to you, then run to the Internet to figure it out on their own. Don’t assume that their initial reaction means that they don’t care.

Give It Some Time

Again, remember – it took (or will take) you time to figure out who you are as a person with MS and what impact MS will have on your life. Your parents will also need some time to figure this out. They will be looking for clues from you, so help them out. Talk to them. Okay, maybe there is no need to do a “reality dump” of every twinge that you have and every fear that crosses your mind – you be the judge as to how much and what type of information you want to share.

NOTE: All of the above assumes that you have a healthy, loving relationship with your parents. If this is not the case, clearly you are not obligated to share news of your MS diagnosis, especially if you think talking to your parents about this might cause you more hurt than you are already experiencing. Take care of yourself and tell those people who will support you.