At some point, most of us are confronted with having to tell someone; whether it’s a significant other, potential partner, friend or family, about our struggles with multiple sclerosis. Choosing to disclose the illness; no matter who is listening, is a very personal decision and once the information is shared, we can’t take it back. Responses can vary as much as the symptoms we experience with this disease; so it’s important to consider the decision carefully.
Coming up with a plan of action ahead of time helps us feel less vulnerable and more in control of the situation.
Understanding why we want this person to know we are sick can help in developing the best approach to disclosure. Reasons to disclose might include; having support, their understanding of symptoms, giving them the opportunity to know something about us that will likely impact the relationship at times. Knowing what we want them to understand about our disease is also helpful; perhaps it’s the overall impact the disease has on our lives, or maybe it’s just one significant factor that impacts them directly. Sometimes we are compelled to take more of a caregiver role such as making sure they understand it’s not contagious or fatal; and sometimes we just need to show them we are still strong despite the illness.
Once we’ve decided the why’s and what’s, it’s time to figure out the how’s. What is the best approach? There really is no one, right way to explain to somebody who cares about us that we have a chronic illness. It’s important to remember that we are dealing them the same blow that we received. They are going to have feelings; they are going to react. Some of those reactions may be sudden concern or empathy. not everyone reacts to news such as this the same way. Some people will be at a loss for words or want to quickly change the subject; don’t mistake this for not caring. They may not feel comfortable processing the information at that moment or they may not know how to react. Some people have a gift for saying all the wrong things; don’t judge them, give them time. It seems that some people have a knee jerk reaction to help and it goes terribly wrong; again, it doesn’t mean they don’t care, and by allowing ourselves to negatively respond to something said will only undo everything we are trying to accomplish through disclosure.
So how do we present the topic? It’s often good to have a low-key, face to face conversation. It should take place at a time and in a place where distractions are at a minimum but it isn’t necessary to make it the sole focus of the visit. In fact it’s probably better to make it one topic of conversation among other topics so that there is far less pressure on either person before or after the topic is discussed. It is often nice to have another direction to take the conversation off-topic after all questions are resolved. Remember; its always better to end a conversation with someone on a positive note.
Being prepared to answer questions is really important. It really isn’t fair or healthy to tell someone something that will impact both lives and then refuse to talk further about it. Be prepared to explain what Multiple Sclerosis is, what the long term prognosis could mean, and remember to tell them that there is still a lot of research and testing being done with a lot of advancement and possibilities.
One thing to consider is that we should choose a time to disclose when we are feeling more in control of ourselves. How we are feeling will come through in our explanation and will affect the person we are talking with. This is not to say that we always have to be upbeat and happy; that’s not realistic, but rather that we give the person on the other end an opportunity to process all of this without the added burden of having to comfort us at the same time they are first hearing this news.